Well, I've not written in a few weeks and what a few weeks it's been.
Looking back, I think it's fair to say that I have suffered quite a lot with nausea and sickness during my recovery. Obviously I was told it was pretty much a given side-effect, but I thought that it would be negative to expect to be really ill, so I totally underestimated how debilitating it would be. I've had a few days respite, but it seems to be back today annoyingly. Anyway, I need to go back a few weeks and fill you in on what's been going on of late before I bring it up to the present.
Wc 5th Dec was actually quite a good week overall. I saw a mixture of friends and the Friday was a great day, I started to feel more like myself. I was struggling with nausea and insomnia, but it felt like there was a bit of light at the end of the tunnel. Then out of the blue, 5am on Sat morning (10th Dec), I woke up totally confused about who I was, where I was and what was going on. I was unable to speak other than to say 'I don't feel well', I had a numb face, pins and needles in my tongue, lips and right arm, unable to tolerate light and feeling sick. My OH got me ready to go to hospital and I managed to pack a bag just in case before getting in the car about 20 mins later. By the time we got to the local hospital the pain had started and I was pretty much in agony and vomiting every few minutes.
I don't have a lot of memory about what happened after that. I was admitted pretty quickly, rushed into the CT scan and taken up to the acute ward. I do remember the pain being totally unbearable and saying to my family 'help me, please do something' which was obviously very distressing for them. I was really violently sick every few minutes because of the pain and I didn't eat for the 3 days I was in. I was put on morphine, IV paracetamol, a drip and anti-sickness IV. They gave me so much morphine it was ridiculous and I honestly felt like I was on drugs - I was off my head. I was taken for an MRI about 20 mins after being given morphine which in a way was good as I hate MRIs and I don't remember anything about it, but bad because when they brought me out, I had some kind of fit / passed out. Again, I don't remember but I have a big bruise on my thigh and it was very distressing for my OH.
I was then transferred back to the hospital in London where I'd had my surgery. All in all I was in for a week. They explained they had to rule out stroke, epilepsy and tumours. Thankfully all of these things were ruled out, but of course it was a worried and stressful time for all and it seemed to take forever to get to the bottom of. The consultant neurologist has diagnosed severe migraines, in addition to the brain condition and thyroid problems I've been diagnosed with in the last 3 months. That said, I am sceptical as to whether there is no link between all the conditions, but I don't suppose we'll ever know. He's given me a treatment plan to manage these in the future so that I nip them in the bud before I get hospitalised. Basically if they don't get treatment then I'll end up vomiting constantly, unable to eat, dehydrated and on a drip for a week. Nice.
I've only been getting migraines since April this year. And it seems too much of a coincidence that I had a laparoscopy in Feb this year, for which I was treated for Endometriosis/PCOS and I believe has had an effect on my hormone levels. We all know that hormones can play a huge part in migraines... So only time will tell I suppose. I have to go back and see my Endocrinologist about my thyroid in the new year, so I think this is something I'll bring up with him then. It's so tricky though having a neurosurgeon, neurologist, endocrinologist and obs & gynae looking after your conditions because it doesn't feel like anyone is looking at the whole picture. And so often they say 'it's trial and error' which feels like 'we don't really know, sorry.'
The only control I can have is looking after myself so that's what I intend to do. I want to return to training in the new year and go back on my nutritional plans for Endo/PCOS.
Lastly, before I end, I need to apologise if the blog is a bit bland and devoid of emotions. I literally don't have the energy to have any emotions about any of this stuff today. It is what it is and I am taking life one day at a time. It has proved to me that God (or whatever you believe in) has the ultimate plan for your life and there's nothing you can do about that. You just have to be the best person you can be and manage things as best you can, with the tools and resources you have.
I will however write again before Christmas and it will be a blog of gratitude and positivity.
S x
Thursday, 22 December 2011
Saturday, 26 November 2011
A Plateau
I seem to have reached a bit of a plateau in terms of my recovery and it's got me a little down this week. I look back to how I was feeling last Friday/Sat and I can't really see any difference. I am still on the same amount of painkillers (some days this week a few more), I am still mostly in my PJs and napping in the day, I am still sans make up, I can't go out, I can't drive etc etc. I am inherently inpatient and so I have clearly forgotten that I had brain surgery a mere 19 days ago! There have been a few improvements, so it's good to have this blog to reminnd myself!
Mon and Tues this week were awful days overall. I woke with very sick headaches both days and had to go back to bed after having been up only just long enough to eat some toast (wheat free of course) and take my painkillers. That said, I did have my first (non family) visitors this week and that was really nice.
On Monday, a close girl friend came over. On her arrival I felt absolutely awful and she had dropped her little one off at his grandparents as I couldn't face the noise and excitement of an 8 mth old. Gutted as I so wanted a cuddle - he is scrummy. So we only caught up for a short time. But she came bearing wonderful gifts - M&S Lemon, Ginger and Ginseng tea which is aptly called 'Revive' as that pepped me up a bit (in fact it's my new addiction, I'm sat here with a cup right now!), M&S Wheat Free cake - delicious and Gossip Girl on DVD (I've yet to watch any - I've saved the OH the pain, I'll start them next week when he's gone back to work as I think that's only fair. I have subject him to I'm a Celeb, TOWIE, Made in Chelsea, Don't Tell the Bride, even I feel a bit reality-TV'd out!)
Tues was much the same - sick headache, didn't get dressed til the afternoon - and when I say 'dressed' it's a minimal step up from PJs to be honest. I look like something out of Jeremy Kyle, minus the multiple tats and piercings. Apologies if that offends, I actually wanted a tattoo on my neck, under the hairline and the OH said he would divorce me if I did it! And he meant it. As it turns out I have my 5" scar there now so thank goodness I didn't get one! You got to take the positives where you can :-)
Weds, miraculously, I woke without a headache which so far has been the one and only day that this has happened. It was a good day. I saw another lovely friend and her gorgeous little boy (2yrs). They came bearing lovely gifts too - gossip mags, wheat free cake (yummy) and flowers. Her little one was so immaculately behaved. It was good timing as I would've been able to cope with any little one (as gorgeous as he is - did I mention he's gorgeous?) had it been Mon or Tues.
Thurs and Fri - the sickly headaches returned. Thurs I pretty much just laid in bed or on the sofa in front of more rubbish telly. As I mentioned, even I am getting the feeling of slightly overdosing on. I have 5 more weeks off work, I am not sure what I am going to do with myself once the TV stops entertaining me. That said, I am able to read a magazine / book now which I wasn't to start with.
Friday afternoon I managed the slow walk around the block that I'd been advised to do by the physios and thankfully although it was cold, it was really bright and sunny. I was feeling so sick that I thought actually the fresh air might help and it did a little bit. There we are, that's progress from last week!
Shortly after the walk, I had another short visit from another girlfriend and her bubba who is equally as gorgeous and was equally as quiet. More pressies (chocs, mags and a card) and hugs! I've felt very loved this week. It's been lovely to have so many friends coming over. And I have SO many cards - I am overwhelmed, especially in this technological age of email, FB and blogs! And don't even get me started on Royal Mail...
On Friday evening, the OH then took me to the Drs as I was nearly out of anti-sickness tablets. The Dr was really encouraging and was impressed with my scar and progress, which was reassuring. When we got home, I cooked a very quick and easy salmon stir fry. I was absolutely exhausted afterwards and my head was throbbing from looking down, even though it was a matter of 15 minutes. I am doing a little bit of physio each day, looking right/left/down and up, but the prolonged looking down is not something I am used to.
So actually yesterday was a busy day, all in all. I think I probably overdid it, but I have read about some amazing people that have been through far worse than me and it's so often their attitude and approach to life that gets them through. When I was in hospital, some days all I could do was repeat meditations over and over in my head, with my eyes closed and laying down. I wasn't capable of anything else. I could hear my family talking around me, naturally really concerned about me and I so wanted to just say 'I'm OK, I'll be OK' but I just couldn't. That was awful. Everyone keeps saying 'You're doing so well' and I can't quite believe it myself. I'm almost waiting for something bad to happen, like an infection, Meningitis, numbness of the limbs or a CSF leak which are all possible side effects. The OH summed it up well - if it's going to happen, bring it on now, so I can deal with it and get over it. I guess I just feel so grateful that my recovery has so far been quite 'straightforward' that I can't quite believe it.
The sickness is pretty unpleasant and frustrating. But sometimes I have to just force myself out of bed because bizarrely although that's ALL I feel like doing, I have to try and get on with normal life and it usually helps to get up and get washed / go for a walk / do something normal. This morning I forced myself to sit up in bed and I started our Christmas shopping. We are now all done (online shopping is literally amazing) apart from our gifts to each other. Now I've finished my 'Revive' tea and had another anti-sickness, dare I say it but I think the nausea has passed. It's especially horrible nausea because normally if you had a bug, you would be sick and you'd feel some relief, but with this you don't want to be sick because then you'll have thrown up the pain relief and anti-sickness and you'll feel worse sickness AND you'll be in pain. Not to mention me freaking out about bursting my stitches (and now wound) if I'm sick. I have been reliably informed that that can't happen, but trust me, it doesn't help alleviate my fears.
The other thing I am really suffering with at the moment, is not being able to sleep. When I was in hospital I slept all the time, then when I first got home I would nap all through the day and still go to bed at 8pm and sleep through til 8am. Now, I go to bed at 10pm (ish) and I lay there for probably 3-4 hours, sleep til the early hours (usually needing painkillers), then I sleep in til 10am, when I wake in pain and find it hard to get up. The worst part is the 3-4 hours where I am awake. Every time I go to drift off, my tummy flips over (kind of like the feeling I used to get the morning after a night out - 'what have I done?' a lot to be ashamed of, 'who have I upset?' everyone, 'Who have I phoned at 3am?' people you really shouldn't have) and I get this lurching feeling of
Totally irrational and totally unexpected. I spent a long time worrying before the op and about my immediate recovery in hospital, but the recovery at home was always an unknown. I guess the other reason I can't seem to sleep is because I'm not actually doing a lot in the day. I know the answer is to go to bed at 10pm and force myself up at 8am or whatever, regardless of what time I managed to fall asleep, just to break the cycle. The OH is back to work next week and his alarm will be going off around 6am so I guess that will help.
So onto next week. It's all change! OH is back to work and my Mum is coming in in the mornings. I pretty much have visitors planned for the afternoons too, which is nice. I am much more capable than I thought I would be by this point i.e. I'm out of bed, but I can't manage on my own just yet. E.g. I can't make all my meals, I'm not allowed to wash alone, I can't always get dressed unaided, I need help with the stairs, I need help with my painkillers etc. I'm obviously not able to drive, so I need help to get shopping / misc stuff. So massively appreciate my Mum's help.
I've also decided to go in and visit my Mum's colleagues before the Christmas break. They've all been so lovely with cards and texts, asking my Mum everyday how I am etc.
Right, I'm off to have my bath. It's 2.15pm.
S x
Mon and Tues this week were awful days overall. I woke with very sick headaches both days and had to go back to bed after having been up only just long enough to eat some toast (wheat free of course) and take my painkillers. That said, I did have my first (non family) visitors this week and that was really nice.
On Monday, a close girl friend came over. On her arrival I felt absolutely awful and she had dropped her little one off at his grandparents as I couldn't face the noise and excitement of an 8 mth old. Gutted as I so wanted a cuddle - he is scrummy. So we only caught up for a short time. But she came bearing wonderful gifts - M&S Lemon, Ginger and Ginseng tea which is aptly called 'Revive' as that pepped me up a bit (in fact it's my new addiction, I'm sat here with a cup right now!), M&S Wheat Free cake - delicious and Gossip Girl on DVD (I've yet to watch any - I've saved the OH the pain, I'll start them next week when he's gone back to work as I think that's only fair. I have subject him to I'm a Celeb, TOWIE, Made in Chelsea, Don't Tell the Bride, even I feel a bit reality-TV'd out!)
Tues was much the same - sick headache, didn't get dressed til the afternoon - and when I say 'dressed' it's a minimal step up from PJs to be honest. I look like something out of Jeremy Kyle, minus the multiple tats and piercings. Apologies if that offends, I actually wanted a tattoo on my neck, under the hairline and the OH said he would divorce me if I did it! And he meant it. As it turns out I have my 5" scar there now so thank goodness I didn't get one! You got to take the positives where you can :-)
Weds, miraculously, I woke without a headache which so far has been the one and only day that this has happened. It was a good day. I saw another lovely friend and her gorgeous little boy (2yrs). They came bearing lovely gifts too - gossip mags, wheat free cake (yummy) and flowers. Her little one was so immaculately behaved. It was good timing as I would've been able to cope with any little one (as gorgeous as he is - did I mention he's gorgeous?) had it been Mon or Tues.
Thurs and Fri - the sickly headaches returned. Thurs I pretty much just laid in bed or on the sofa in front of more rubbish telly. As I mentioned, even I am getting the feeling of slightly overdosing on. I have 5 more weeks off work, I am not sure what I am going to do with myself once the TV stops entertaining me. That said, I am able to read a magazine / book now which I wasn't to start with.
Friday afternoon I managed the slow walk around the block that I'd been advised to do by the physios and thankfully although it was cold, it was really bright and sunny. I was feeling so sick that I thought actually the fresh air might help and it did a little bit. There we are, that's progress from last week!
Shortly after the walk, I had another short visit from another girlfriend and her bubba who is equally as gorgeous and was equally as quiet. More pressies (chocs, mags and a card) and hugs! I've felt very loved this week. It's been lovely to have so many friends coming over. And I have SO many cards - I am overwhelmed, especially in this technological age of email, FB and blogs! And don't even get me started on Royal Mail...
On Friday evening, the OH then took me to the Drs as I was nearly out of anti-sickness tablets. The Dr was really encouraging and was impressed with my scar and progress, which was reassuring. When we got home, I cooked a very quick and easy salmon stir fry. I was absolutely exhausted afterwards and my head was throbbing from looking down, even though it was a matter of 15 minutes. I am doing a little bit of physio each day, looking right/left/down and up, but the prolonged looking down is not something I am used to.
So actually yesterday was a busy day, all in all. I think I probably overdid it, but I have read about some amazing people that have been through far worse than me and it's so often their attitude and approach to life that gets them through. When I was in hospital, some days all I could do was repeat meditations over and over in my head, with my eyes closed and laying down. I wasn't capable of anything else. I could hear my family talking around me, naturally really concerned about me and I so wanted to just say 'I'm OK, I'll be OK' but I just couldn't. That was awful. Everyone keeps saying 'You're doing so well' and I can't quite believe it myself. I'm almost waiting for something bad to happen, like an infection, Meningitis, numbness of the limbs or a CSF leak which are all possible side effects. The OH summed it up well - if it's going to happen, bring it on now, so I can deal with it and get over it. I guess I just feel so grateful that my recovery has so far been quite 'straightforward' that I can't quite believe it.
The sickness is pretty unpleasant and frustrating. But sometimes I have to just force myself out of bed because bizarrely although that's ALL I feel like doing, I have to try and get on with normal life and it usually helps to get up and get washed / go for a walk / do something normal. This morning I forced myself to sit up in bed and I started our Christmas shopping. We are now all done (online shopping is literally amazing) apart from our gifts to each other. Now I've finished my 'Revive' tea and had another anti-sickness, dare I say it but I think the nausea has passed. It's especially horrible nausea because normally if you had a bug, you would be sick and you'd feel some relief, but with this you don't want to be sick because then you'll have thrown up the pain relief and anti-sickness and you'll feel worse sickness AND you'll be in pain. Not to mention me freaking out about bursting my stitches (and now wound) if I'm sick. I have been reliably informed that that can't happen, but trust me, it doesn't help alleviate my fears.
The other thing I am really suffering with at the moment, is not being able to sleep. When I was in hospital I slept all the time, then when I first got home I would nap all through the day and still go to bed at 8pm and sleep through til 8am. Now, I go to bed at 10pm (ish) and I lay there for probably 3-4 hours, sleep til the early hours (usually needing painkillers), then I sleep in til 10am, when I wake in pain and find it hard to get up. The worst part is the 3-4 hours where I am awake. Every time I go to drift off, my tummy flips over (kind of like the feeling I used to get the morning after a night out - 'what have I done?' a lot to be ashamed of, 'who have I upset?' everyone, 'Who have I phoned at 3am?' people you really shouldn't have) and I get this lurching feeling of
- Oh God, I've had my brain cut open / I've got an implant in my brain
- I have a really serious condition that potentially could effect my whole life
- The nurses could've done me in while I was hooked up to the Morphine PCA
- What if they hadn't diagnosed me and I ended up unable to walk?
- What happens if I never get off these painkillers?
- I've really frightened my whole family (and friends)
- General guilt about what an awful wife my OH got and is he wishing he had never met me!?
Totally irrational and totally unexpected. I spent a long time worrying before the op and about my immediate recovery in hospital, but the recovery at home was always an unknown. I guess the other reason I can't seem to sleep is because I'm not actually doing a lot in the day. I know the answer is to go to bed at 10pm and force myself up at 8am or whatever, regardless of what time I managed to fall asleep, just to break the cycle. The OH is back to work next week and his alarm will be going off around 6am so I guess that will help.
So onto next week. It's all change! OH is back to work and my Mum is coming in in the mornings. I pretty much have visitors planned for the afternoons too, which is nice. I am much more capable than I thought I would be by this point i.e. I'm out of bed, but I can't manage on my own just yet. E.g. I can't make all my meals, I'm not allowed to wash alone, I can't always get dressed unaided, I need help with the stairs, I need help with my painkillers etc. I'm obviously not able to drive, so I need help to get shopping / misc stuff. So massively appreciate my Mum's help.
I've also decided to go in and visit my Mum's colleagues before the Christmas break. They've all been so lovely with cards and texts, asking my Mum everyday how I am etc.
Right, I'm off to have my bath. It's 2.15pm.
S x
Thursday, 17 November 2011
Stitches and Staples
Just a quick post tonight to update on my progress. Today I had 10 staples and 16 stitches out. Pics below pre and post! I've moved them down the page as not to preview them on Facebook. I am pretty immune to these now, but am aware some people a) might not want to see them and b) might find them upsetting.
I was super brave (even if I do say so myself!) and barely flinched. It actually didn't hurt too much, but then it's all relative - I think the last few months have toughened me up. Anyway I am v excited at being able to wash my hair tomorrow - hooray!
I was super brave (even if I do say so myself!) and barely flinched. It actually didn't hurt too much, but then it's all relative - I think the last few months have toughened me up. Anyway I am v excited at being able to wash my hair tomorrow - hooray!
Wednesday, 16 November 2011
The Days After the Op (In Hospital)
Mon 7th Nov
So the 4 of us (me, OH, Mum and MIL) arrived at The Wellington South hospital in St John's Wood at 7.20am. I think I was strangely serene by this point. I know I was starving hungry because I wasn't allowed to eat anything from the night before to after the op. There wasn't much conversation in the car on the way down, but I think everything had already been said.
We were shown up to my room at just before half past and before I could even get my coat off, my Consultant and the nurse had arrived with the consent form. I was having bloods taken, the ID wristband put on, blood pressure taken and anti-thrombosis socks put on before I knew what was happening. It was all very quick, but to be honest, I am so glad. For two reasons a) I didn't have hours of waiting around, getting stressed and b) I was back up in my room around 11.30am so I had gained almost another day's recovery time.
Anyway no sooner had I got on the trolley to go down to theatre, I started crying. I had promised myself that I would try hard not to (I've done so much crying over this!), but actually when the time came, it felt like it was OK to do that. I just kept saying 'I am SO scared' and the staff were all very kind.
I gave my family huge hugs and then into the prep room I went. They gave me a sedative to calm me down and then the anaesthetic. It was much slower acting than previous ones I've had and I was in the prep room longer, but because the whole thing was quite quick, I welcomed that. I remember feeling like I wanted to jump off the telly and go running up the corridor screaming. The sedative helped with that!
I don't remember much of coming round in the recovery room. Just being asked if I had pain or sickness and given some drugs to help with both. But I don't remember the pain or nausea if I did have it, it was sorted out very quickly. The only thing I really remember is them taking out my arterial line in my wrist, but not because there was pain or anything.
When I came back to the room, late morning, I actually didn't feel too bad at all. I was chatting and joking with everyone for the rest of the day apparently. Everyone kept saying that I was better than they thought I would be at that stage. I remember thinking not to get too smug about that. (How right I was!)
So at that point, I was flat on my back, with quite a few tubes. I was hooked up to oxygen via two pipes in my nose, a morphine PCA, two canulas for drugs and a drain from my brain. Oh and the inflatable anti-thrombosis socks, which did become very hot and uncomfortable. I think that was everything. The one thing I didn't have and had worried about having was a catheter. The surgeon said that because I was young and it was best to try and avoid catheters for the risk of infection that I should try to use a bed pan. Well, without getting too personal - you can't begin to imagine how impossible that is, when you're numb and lying flat. In the end they gave me a catheter, I was in more pain with my bladder than I was with my head and I became slightly hysterical. I think part of it was something was not as I expected it to be and the thought of wetting the bed was scaring me!
I think I managed to have something to eat and drink, which wasn't easy again lying down but it wasn't too bad.
Tues 8th / Weds 9th
Were the worst 2 days and 2 nights. I was sick continually. I had tried to carry on eating on the Tues, but was pretty unable. The smell or thought of food was enough to make me sick. They took me off the Morphine and I stopped taking the Ibruprofen tablets as these were thought to be making me nauseous. When I say I was sick, that just can't even describe how sick. It's a constant nauseous feeling, with actual throwing up a couple of times each hour I suppose. But obviously you're still lying down and you have stitches (and a drain) in your head, so you are petrified to be sick in case you choke or burst your stitches. It's pretty terrifying. That said, I did really well - it's really normal with the op to be sick for weeks. Actually my sickness was worse when we first went into hospital back in August - I had sickness for pretty much 3 weeks solid.
I had lots of family visitors during this time which helped lift my spirits and the nurses were all great at reassuring us that everything was normal with my recovery. My surgeon came to see me every morning as well.
Thurs 10th
I think they took my drain out on the Thursday and I felt better almost straight away, it was definitely the start of phase 2 of recovery. It was also a pretty awful experience. The Dr said he would pull the drain out (of my brain) and then stitch it up. I was like 'Oh, OK (not the greatest but fine), so I'll have a local anaesthetic for that?' and the Dr said 'No, no, you don't need anaesthetic'. GREAT. I managed to only say 'Jesus' as they removed it, which I thought I did pretty well for. The word I wanted to say starts with FU and ends with CK. As the drain came out, the pressure in my head changed. The weidest feeling in the world. But at least it feels better. My hearing since then has pretty much been 'in stereo' so I keep having to tell everyone 'sssshh!' with I think it wearing thin with my carer / OH.
I was also reduced to 1 canula on the Thurs and I was allowed to sit up a bit more, so gradually I started to feel like I was making progress.
Fri 11th
The Fri was a good day on the whole as I had my first physio session, so I managed to persuade the staff to remove the catheter that I had begged for in the first place. It was driving me IN-sane by this point. So that I could get up. I sat on the edge of the bed for 5 minutes in the morning and then I was allowed to walk to the toilet in my room in the afternoon, with help. It felt very strange, almost like learning how to stand and balance again, but the area of the brain they operate near looks after balance and co-ordination, so it's to be expected I suppose. That and the fact that you've been lying down, flat on your back for 5 days.
Sat 12th
The first day I think I managed to have the telly on. I watched part of a film but was so worn out I gave up part way through. I wasn't able to read a magazine either at this point. It was too tiring and my eyes wouldn't focus. Plus very uncomfortable looking down.
Sun 13th
I was discharged. Top tip for anyone having the surgery, take a neck pillow for the car journey as it would've been really uncomfortable without that. I had my 2nd physio appt and managed to walk up one half flight of stairs.
Worst Part
Other than the sickness and the drain... I think the best way I can describe my stay in hospital, is it was like someone coming off hard drugs, cold turkey. I wasn't sure what conversations I'd had were real, my temperature was all over the place - with sweats and then cold shakes, the sickness, terrifying nightmares and panic attacks. The panic attacks in the night were the worst - I seemed to suffer with those quite badly. I'd wake up, not knowing where I was, but who I was either. At one point I dreamt I had been on Deren Brown's show and that I hadn't really had the surgery, I'd just been hypnotised to think I had and my surgery was actually next week. That really messed up my mind!! I don't think Morphine agrees with me, I hope never to have to take it again.
Best Part
Some of the best things I took into hospital:
- Hand fan (thanks Gdad)
- Mouth freshner (thanks little bro)
And of course, all the support and love I received. Thank you from the bottom of my heart if you sent a text, a FB message, flowers, a card etc. I hope I have said thank you individually to everyone that did, by now. I have tried to do that, because I cannot tell you how appreciated it's been. This op has changed me forever, but I wouldn't wish it on anyone. My family have really been through it as well, so thank you for all the support they have received.
I am not really sure if any of this has made any sense actually and too tired to proof read it. I am EXHAUSTED now I've typed this up, but I wanted to get it down before I forget. Going to have some lunch and a sleep. More to come - but probably updates once a week at the moment.
Stitches and staples out tomorrow - so thinking that will be an uncomfortable day.
Friday - I am hoping to wash my hair. I REALLY hope so because it smells like something has crawled in there and died. And it LOOKS like I have NEVER washed it.
Sarah xxx
So the 4 of us (me, OH, Mum and MIL) arrived at The Wellington South hospital in St John's Wood at 7.20am. I think I was strangely serene by this point. I know I was starving hungry because I wasn't allowed to eat anything from the night before to after the op. There wasn't much conversation in the car on the way down, but I think everything had already been said.
We were shown up to my room at just before half past and before I could even get my coat off, my Consultant and the nurse had arrived with the consent form. I was having bloods taken, the ID wristband put on, blood pressure taken and anti-thrombosis socks put on before I knew what was happening. It was all very quick, but to be honest, I am so glad. For two reasons a) I didn't have hours of waiting around, getting stressed and b) I was back up in my room around 11.30am so I had gained almost another day's recovery time.
Anyway no sooner had I got on the trolley to go down to theatre, I started crying. I had promised myself that I would try hard not to (I've done so much crying over this!), but actually when the time came, it felt like it was OK to do that. I just kept saying 'I am SO scared' and the staff were all very kind.
I gave my family huge hugs and then into the prep room I went. They gave me a sedative to calm me down and then the anaesthetic. It was much slower acting than previous ones I've had and I was in the prep room longer, but because the whole thing was quite quick, I welcomed that. I remember feeling like I wanted to jump off the telly and go running up the corridor screaming. The sedative helped with that!
I don't remember much of coming round in the recovery room. Just being asked if I had pain or sickness and given some drugs to help with both. But I don't remember the pain or nausea if I did have it, it was sorted out very quickly. The only thing I really remember is them taking out my arterial line in my wrist, but not because there was pain or anything.
When I came back to the room, late morning, I actually didn't feel too bad at all. I was chatting and joking with everyone for the rest of the day apparently. Everyone kept saying that I was better than they thought I would be at that stage. I remember thinking not to get too smug about that. (How right I was!)
So at that point, I was flat on my back, with quite a few tubes. I was hooked up to oxygen via two pipes in my nose, a morphine PCA, two canulas for drugs and a drain from my brain. Oh and the inflatable anti-thrombosis socks, which did become very hot and uncomfortable. I think that was everything. The one thing I didn't have and had worried about having was a catheter. The surgeon said that because I was young and it was best to try and avoid catheters for the risk of infection that I should try to use a bed pan. Well, without getting too personal - you can't begin to imagine how impossible that is, when you're numb and lying flat. In the end they gave me a catheter, I was in more pain with my bladder than I was with my head and I became slightly hysterical. I think part of it was something was not as I expected it to be and the thought of wetting the bed was scaring me!
I think I managed to have something to eat and drink, which wasn't easy again lying down but it wasn't too bad.
Tues 8th / Weds 9th
Were the worst 2 days and 2 nights. I was sick continually. I had tried to carry on eating on the Tues, but was pretty unable. The smell or thought of food was enough to make me sick. They took me off the Morphine and I stopped taking the Ibruprofen tablets as these were thought to be making me nauseous. When I say I was sick, that just can't even describe how sick. It's a constant nauseous feeling, with actual throwing up a couple of times each hour I suppose. But obviously you're still lying down and you have stitches (and a drain) in your head, so you are petrified to be sick in case you choke or burst your stitches. It's pretty terrifying. That said, I did really well - it's really normal with the op to be sick for weeks. Actually my sickness was worse when we first went into hospital back in August - I had sickness for pretty much 3 weeks solid.
I had lots of family visitors during this time which helped lift my spirits and the nurses were all great at reassuring us that everything was normal with my recovery. My surgeon came to see me every morning as well.
Thurs 10th
I think they took my drain out on the Thursday and I felt better almost straight away, it was definitely the start of phase 2 of recovery. It was also a pretty awful experience. The Dr said he would pull the drain out (of my brain) and then stitch it up. I was like 'Oh, OK (not the greatest but fine), so I'll have a local anaesthetic for that?' and the Dr said 'No, no, you don't need anaesthetic'. GREAT. I managed to only say 'Jesus' as they removed it, which I thought I did pretty well for. The word I wanted to say starts with FU and ends with CK. As the drain came out, the pressure in my head changed. The weidest feeling in the world. But at least it feels better. My hearing since then has pretty much been 'in stereo' so I keep having to tell everyone 'sssshh!' with I think it wearing thin with my carer / OH.
I was also reduced to 1 canula on the Thurs and I was allowed to sit up a bit more, so gradually I started to feel like I was making progress.
Fri 11th
The Fri was a good day on the whole as I had my first physio session, so I managed to persuade the staff to remove the catheter that I had begged for in the first place. It was driving me IN-sane by this point. So that I could get up. I sat on the edge of the bed for 5 minutes in the morning and then I was allowed to walk to the toilet in my room in the afternoon, with help. It felt very strange, almost like learning how to stand and balance again, but the area of the brain they operate near looks after balance and co-ordination, so it's to be expected I suppose. That and the fact that you've been lying down, flat on your back for 5 days.
Sat 12th
The first day I think I managed to have the telly on. I watched part of a film but was so worn out I gave up part way through. I wasn't able to read a magazine either at this point. It was too tiring and my eyes wouldn't focus. Plus very uncomfortable looking down.
Sun 13th
I was discharged. Top tip for anyone having the surgery, take a neck pillow for the car journey as it would've been really uncomfortable without that. I had my 2nd physio appt and managed to walk up one half flight of stairs.
Worst Part
Other than the sickness and the drain... I think the best way I can describe my stay in hospital, is it was like someone coming off hard drugs, cold turkey. I wasn't sure what conversations I'd had were real, my temperature was all over the place - with sweats and then cold shakes, the sickness, terrifying nightmares and panic attacks. The panic attacks in the night were the worst - I seemed to suffer with those quite badly. I'd wake up, not knowing where I was, but who I was either. At one point I dreamt I had been on Deren Brown's show and that I hadn't really had the surgery, I'd just been hypnotised to think I had and my surgery was actually next week. That really messed up my mind!! I don't think Morphine agrees with me, I hope never to have to take it again.
Best Part
Some of the best things I took into hospital:
- Hand fan (thanks Gdad)
- Mouth freshner (thanks little bro)
And of course, all the support and love I received. Thank you from the bottom of my heart if you sent a text, a FB message, flowers, a card etc. I hope I have said thank you individually to everyone that did, by now. I have tried to do that, because I cannot tell you how appreciated it's been. This op has changed me forever, but I wouldn't wish it on anyone. My family have really been through it as well, so thank you for all the support they have received.
I am not really sure if any of this has made any sense actually and too tired to proof read it. I am EXHAUSTED now I've typed this up, but I wanted to get it down before I forget. Going to have some lunch and a sleep. More to come - but probably updates once a week at the moment.
Stitches and staples out tomorrow - so thinking that will be an uncomfortable day.
Friday - I am hoping to wash my hair. I REALLY hope so because it smells like something has crawled in there and died. And it LOOKS like I have NEVER washed it.
Sarah xxx
The Days Before the Op
Wow, I have not blogged for a long time!
The week before my op I was in a pretty bad place mentally. The day before my op, I totally lost it. There were tears and screaming. I just wanted to do a runner really. And there was nothing that anyone could say or do to help me, other than 'You don't have to have the op, we've made a mistake.' But clearly that wasn't going to happen.
My work were amazing on my last day - I got a card, chocs and flowers which was really unexpected and a lovely speech from my boss. It made me really emotional and I really didn't want to have 6 weeks off work. I just kept thinking 'But I really like my job, I just want to be well.'
I took the Friday off before the op and went and had a massage and facial by myself, locally. Which was heaven for those couple of hours that I drifted off and wasn't thinking about the op or brains. Then my OH picked me up about 4pm and we went into London for the evening before our good friends got married the next day. We went for a meal as a group, which I found it hard to be part of to start with, but gradually I thawed out a bit and really enjoyed it. Mainly thanks to a very old friend and my OH that I was sat in between, just being totally normal and not letting me wallow in my own self pity - thanks guys.
The wedding itself was incredible. OH was an usher and all the boys looked absolutely gorgeous/smart in their suits. The bride was absolutely stunning, the venue was amazing, the food was great, the company was fantastic. I laughed loads and loads. I even sort of made a new friend (she now probably thinks I am a total stalker). It was the perfect way to spend a weekend. And because I thought it might be my last (what an idiot) I danced all night, completely sober and I loved every second of it. I'm not a great dancer, I'm not even an OK dancer, but I literally didn't care because I was just pleased to have use of my legs. I know that probably sounds dramatic, but I will always remember that night and what going in for this op has taught me. No-one CARES how I dance and even if they did, I shouldn't CARE, because dancing isn't about being the best, it's about having fun. And I damn lucky to have a pair of legs and a body that is ABLE to dance. And I hope I never forget that.
We drove home that night, with my in-laws and had a lazy Sunday morning (the day before the op). As I say the day before I wasn't in a very good place. We watched 'Bad Teacher' at home which was really amusing and took my mind off things for a while. When the credits came up, it was like I was brought back into the room and I said to my OH, I feel like screaming and he suggested I did into a pillow. And it was actually really healing because as I did, I burst into floods of tears and he just held me until I stopped. I think I needed that.
My brother and his gf came over in the evening which was nice, although any kind of resolve I had, was lost so I don't think I did much to reassure him I was going to be OK.
We were up at 5am the next day to head to London for the op...
The week before my op I was in a pretty bad place mentally. The day before my op, I totally lost it. There were tears and screaming. I just wanted to do a runner really. And there was nothing that anyone could say or do to help me, other than 'You don't have to have the op, we've made a mistake.' But clearly that wasn't going to happen.
My work were amazing on my last day - I got a card, chocs and flowers which was really unexpected and a lovely speech from my boss. It made me really emotional and I really didn't want to have 6 weeks off work. I just kept thinking 'But I really like my job, I just want to be well.'
I took the Friday off before the op and went and had a massage and facial by myself, locally. Which was heaven for those couple of hours that I drifted off and wasn't thinking about the op or brains. Then my OH picked me up about 4pm and we went into London for the evening before our good friends got married the next day. We went for a meal as a group, which I found it hard to be part of to start with, but gradually I thawed out a bit and really enjoyed it. Mainly thanks to a very old friend and my OH that I was sat in between, just being totally normal and not letting me wallow in my own self pity - thanks guys.
The wedding itself was incredible. OH was an usher and all the boys looked absolutely gorgeous/smart in their suits. The bride was absolutely stunning, the venue was amazing, the food was great, the company was fantastic. I laughed loads and loads. I even sort of made a new friend (she now probably thinks I am a total stalker). It was the perfect way to spend a weekend. And because I thought it might be my last (what an idiot) I danced all night, completely sober and I loved every second of it. I'm not a great dancer, I'm not even an OK dancer, but I literally didn't care because I was just pleased to have use of my legs. I know that probably sounds dramatic, but I will always remember that night and what going in for this op has taught me. No-one CARES how I dance and even if they did, I shouldn't CARE, because dancing isn't about being the best, it's about having fun. And I damn lucky to have a pair of legs and a body that is ABLE to dance. And I hope I never forget that.
We drove home that night, with my in-laws and had a lazy Sunday morning (the day before the op). As I say the day before I wasn't in a very good place. We watched 'Bad Teacher' at home which was really amusing and took my mind off things for a while. When the credits came up, it was like I was brought back into the room and I said to my OH, I feel like screaming and he suggested I did into a pillow. And it was actually really healing because as I did, I burst into floods of tears and he just held me until I stopped. I think I needed that.
My brother and his gf came over in the evening which was nice, although any kind of resolve I had, was lost so I don't think I did much to reassure him I was going to be OK.
We were up at 5am the next day to head to London for the op...
Monday, 31 October 2011
A Bit of Positivity
Hey, why not, it's a Monday night and I've got nothing better to do - so why not share a bit of positivity hey! It would make a nice change Sarah.
Work was good today - really busy and lots to sort out, so I spent the day doing just that and not thinking about the op. Always a good thing. Especially as I had woken up with the same mood hanging over me as yesterday.
I have also been stuffing my face under the pretense of needing to put on weight before the op as I won't be eating for a while and will lose a lot. (Or as my beloved OH calls it Op Massive). It's not been a totally good thing as I'm mildly intolerant to dairy and I've got a bit bloated as a result - I look like I'm about 7 months pregnant and feeling a bit groggy. But other than that, it's been a good day - I've laughed several times and generally been a LOT more cheerful. Again not a huge coincidence that I listened to my Positivity app last night.
This afternoon I spoke to someone who has had a shunt put in (it's basically a tube that moves the cerebral spinal fluid away from the brain and into the abdomen so it can then leave the body for example, when the flow is abnormal - this is sometimes needed when there is a complication with the op I'm having). The shunt was put in for a different reason, 16 years ago, so it would have been pioneering then. He went to back to work very quickly because he didn't realise he wasn't supposed to. Just goes to show what you can achieve with a bit of PMA.
But the absolute highlight of today has been driving my car in my normal way. Let me explain. Right. The car likes to tell you when to change up to be economical I am told. This isn't particularly innovative gadget apparently, but it's something I've not had before. So I thought I would drive that way, which would also ensure I don't take it over 3000 rpm (check me out with my brummer knowledge), thus saving the new engine. Anyway I think it's fair to say I was a bit disappointed with the car last week. I was thinking it wasn't 'nippy', it wasn't that fun to drive and dare I say it, it was a bit sluggish. I was like this is just too big and lumbering, it's a boy's car, I want my BMW 120d coupe which is what I'd said in the first place, I don't care about not being able to drive in the wet / snow, or that it's totally impractical for taking friends and family or if we have children, in fact I'd sooner drive our Focus, the OH can take the Audi to work. Anyway today I decided to drive it to work in my normal driving style (still not taking it over 3000 rpm but not changing up to 6th gear at 37 miles an hour) and I was like 'hello'!!! The engine sounds uh-mazing, handling is awesome and it has some real go behind it. Now I know why I wanted the Audi - it wasn't just the LED headlights I promise (total lie). Anyway it was a real pleasure to drive to and from work in my usual style. It's not about driving fast, I'm not a total girl-racer, I was just finding it really unresponsive, whereas now I LOVE it. 7 more days of driving it, so at least I have discovered this in time. It's also really easy to park - said like a true girl.
This evening I had a great hypnotherapy / healing treatment and I have some new breathing exercises and techniques to take into hospital with me. I'm also going to write a little note to ask the nurses to remind me about my breathing and to put my headphones in so I can listen to my meditation apps. Which the therapist suggested as she used to be an intensive care nurse.
Some more stuff to feel positive about:
- Two of our beautiful friends are getting married on Saturday and I CANT wait to see them tie the knot. The OH is also an usher which is exciting - I am sure he will look gorge in his suit. I've never been to a winter wedding before either. My lovely SIL has leant me a really pretty dress to wear and I will be wearing one of my favourite pairs of shoes!
- I am seeing the consultant tomorrow so will hopefully get to ask all my outstanding questions which will be a good opportunity. I'm hoping he will tell us exactly what he plans to do in the op as there are a couple of options depending on what he finds etc. It would be good to get more of an idea, rather than going on what Google says!
- I have downloaded LoveFilm to watch on the iPad - v exciting
- I've had some great presents and cards and get well messages - I feel very loved!
And with that, I shall be retiring to bed to get some rest, everything is always better after sleeeeep.
A 100% more up tempo Sarah x
7 days and counting ;-)
Work was good today - really busy and lots to sort out, so I spent the day doing just that and not thinking about the op. Always a good thing. Especially as I had woken up with the same mood hanging over me as yesterday.
I have also been stuffing my face under the pretense of needing to put on weight before the op as I won't be eating for a while and will lose a lot. (Or as my beloved OH calls it Op Massive). It's not been a totally good thing as I'm mildly intolerant to dairy and I've got a bit bloated as a result - I look like I'm about 7 months pregnant and feeling a bit groggy. But other than that, it's been a good day - I've laughed several times and generally been a LOT more cheerful. Again not a huge coincidence that I listened to my Positivity app last night.
This afternoon I spoke to someone who has had a shunt put in (it's basically a tube that moves the cerebral spinal fluid away from the brain and into the abdomen so it can then leave the body for example, when the flow is abnormal - this is sometimes needed when there is a complication with the op I'm having). The shunt was put in for a different reason, 16 years ago, so it would have been pioneering then. He went to back to work very quickly because he didn't realise he wasn't supposed to. Just goes to show what you can achieve with a bit of PMA.
But the absolute highlight of today has been driving my car in my normal way. Let me explain. Right. The car likes to tell you when to change up to be economical I am told. This isn't particularly innovative gadget apparently, but it's something I've not had before. So I thought I would drive that way, which would also ensure I don't take it over 3000 rpm (check me out with my brummer knowledge), thus saving the new engine. Anyway I think it's fair to say I was a bit disappointed with the car last week. I was thinking it wasn't 'nippy', it wasn't that fun to drive and dare I say it, it was a bit sluggish. I was like this is just too big and lumbering, it's a boy's car, I want my BMW 120d coupe which is what I'd said in the first place, I don't care about not being able to drive in the wet / snow, or that it's totally impractical for taking friends and family or if we have children, in fact I'd sooner drive our Focus, the OH can take the Audi to work. Anyway today I decided to drive it to work in my normal driving style (still not taking it over 3000 rpm but not changing up to 6th gear at 37 miles an hour) and I was like 'hello'!!! The engine sounds uh-mazing, handling is awesome and it has some real go behind it. Now I know why I wanted the Audi - it wasn't just the LED headlights I promise (total lie). Anyway it was a real pleasure to drive to and from work in my usual style. It's not about driving fast, I'm not a total girl-racer, I was just finding it really unresponsive, whereas now I LOVE it. 7 more days of driving it, so at least I have discovered this in time. It's also really easy to park - said like a true girl.
This evening I had a great hypnotherapy / healing treatment and I have some new breathing exercises and techniques to take into hospital with me. I'm also going to write a little note to ask the nurses to remind me about my breathing and to put my headphones in so I can listen to my meditation apps. Which the therapist suggested as she used to be an intensive care nurse.
Some more stuff to feel positive about:
- Two of our beautiful friends are getting married on Saturday and I CANT wait to see them tie the knot. The OH is also an usher which is exciting - I am sure he will look gorge in his suit. I've never been to a winter wedding before either. My lovely SIL has leant me a really pretty dress to wear and I will be wearing one of my favourite pairs of shoes!
- I am seeing the consultant tomorrow so will hopefully get to ask all my outstanding questions which will be a good opportunity. I'm hoping he will tell us exactly what he plans to do in the op as there are a couple of options depending on what he finds etc. It would be good to get more of an idea, rather than going on what Google says!
- I have downloaded LoveFilm to watch on the iPad - v exciting
- I've had some great presents and cards and get well messages - I feel very loved!
And with that, I shall be retiring to bed to get some rest, everything is always better after sleeeeep.
A 100% more up tempo Sarah x
7 days and counting ;-)
Sunday, 30 October 2011
Sunday Blues
So last week was crazy busy both at work and at home and as a result I've been rubbish at keeping this up to date. I started to write an entry yesterday and it was about more positive feelings and events, but I ended up having to go out half way through and in a moment of severe self-doubt decided what I had written was a load of old shit. So it got deleted.
I've been feeling guilty that my blogs haven't been more up beat, they are hardly an inspiration to anyone newly diagnosed as they currently stand; I actually don't know who would find them interesting to read, but I have to be honest about how I am feeling. Hey, even if no-one reads them, they are helpful to me!
I've been feeling very panicky again, generally unable to cope with life and exhausted. Maybe I'll start by recapping the good stuff from the last few days and it will pick me up. If not, I'm going to call it a day and go to bed.
Thursday was a good day - I went shopping with my Mum after work to get a few clothes for the winter. I will clearly live in slobs for most of Nov and Dec, but when I come to go back to work (hopefully Jan) I won't have anything to wear and there is no way I'd tackle the Jan sales feeling 100% so I wouldn't dream of doing it post op. I got a few nice Clinique bits as well - I doubt I'm going to feel like / be able to do the full cleanse, tone, moisturise routine but maybe my Mum will do it for me. I bought some body lotion and hand cream as well cos your skin gets so dry in hospital - again a job for my Mum or OH. (I haven't told him yet - something for him to look forward to!)
Friday night we went to the OH's cousin's house for his wife's bday (check out all those correctly placed apostrophes little bro?!) - they cooked for 18 people which was very impressive. We had a very civilised evening as we didn't really feel up for partying, but I was really glad that we went and we met some really nice people and I didn't have to talk about the op, which was actually a godsend.
Saturday day we went and 'got organised' - we got some keys cut for family members that need to be able to pop in when I'm back and we got some bday cards and presents for people that will have birthdays while I'm poorly. It was overall a pretty successful trip. I freaked out round the shops a bit - it was all just too much. I can't explain why - I just get these waves of panic. They come on really suddenly and I feel like I'm going to burst. I had to go and sit down out of the way and sip water. The OH bought me some rescue remedy which I find really useful too. I suppose it's only natural but I'm used to being very in control of my feelings and my life.
After shopping, we then went to meet a fellow Chiari sufferer that I met online, for a coffee. It was brilliant. Just to speak to someone else with the same illness was great - I suddenly didn't feel so alone. Previously I'd felt like the only one, a total weirdo, with some freak illness. Anyway she was a very positive person and that rubbed off on me. A few weeks ago, she had met someone else with the illness that had seen the same surgeon as I'm seeing and she was 9 weeks post op. On the whole, she had apparently had a complication-free recovery, apart from sickness. So that was good to hear.
My top fears around the op at the moment are:
- The brain surgery generally (and the serious possible complications - meningitis, coma, paralysis, death)
- Getting the sickness (if they disturb the 'vomit centre' which is an area in the brain close to where they are operating, then this can add around 4 weeks to your recovery)
- Being catherterised (sp!) (they say that will be 3-5 days - until you can get up and take yourself to the toilet basically)
- Bed baths (again for 3-5 days depending on how quickly you recover)
- Being hooked up to lots of machines
- The 'drain' which is a tube connected to your brain/head under the skin (I believe it acts like an overflow pipe if there's any problems with the new CS flow)
- My family being really upset at seeing me in intensive care
- Not being able to communicate
- Waking up during the op (as I will be face down on the bed - how will they know! Yes, I know rationally that they'll monitor my heart beat!)
- Not being able to eat / my wheat allergy
- The part-head shaving thing
- Staples / big scar / stitches
- The pain
- Having to be on morphine again
Actually, that's quite a lot. Hang on, I've majorly digressed from the positive things that have happened this week!
Sat evening we went to my parents for dinner which was really nice. Today we went to lunch with close friends and although I don't think I was particularly good company, it was great to see them and get lots of hugs which were much needed. This evening I caught up with X Factor and Strictly which took my mind off things for a few hours, for which I was really grateful for. I cannot believe how DARK it is now the clocks have gone back (or is it forward - I don't get it, just leave them damn well alone) - I was ready to go to bed at 5.30pm - I thought it was about midnight!
Well accounting my most recent happenings have done nothing to lift my mood. I am basically a grumpy shit today. Therefore I am going to head off to bed soon. I have had enough of today really. I'm about halfway through a Martina Cole novel - so I'll try and get engrossed in that, then stick on one of my meditation apps and pray this mood has shifted tomorrow.
I was thinking my life has been pretty mad over the last few years: 2009 I got married, 2010 I ran the London marathon and in 2011 I am having brain surgery. Not to mention I had Endometriosis surgery in Feb this year too. But I don't like to moan! Two ops in a year - seriously!? But I have to remind myself that there are people a lot worse off than. me. Obviously there have been other things going on, but they are some high / low lights. On that note, I really am going to bed now. Hang on...
I would like to finish on this - if I hear ONE more thing about effing ZUMBA, I will scream. I don't know why it winds me up, but it does. There was a demo in the shopping centre we went to on Sat, I've just seen an ad about it on the TV, it's everywhere and has been for months. Maybe it's the over-cheerful cheering when I feel like punching everyone in the face or perhaps (and more likely) it's because I am hugely jealous that a) they can do exercise and I'm not allowed at the moment b) that they are co-ordinated enough to do Zumba which I am not.
Right. Bed.
S x
I've been feeling guilty that my blogs haven't been more up beat, they are hardly an inspiration to anyone newly diagnosed as they currently stand; I actually don't know who would find them interesting to read, but I have to be honest about how I am feeling. Hey, even if no-one reads them, they are helpful to me!
I've been feeling very panicky again, generally unable to cope with life and exhausted. Maybe I'll start by recapping the good stuff from the last few days and it will pick me up. If not, I'm going to call it a day and go to bed.
Thursday was a good day - I went shopping with my Mum after work to get a few clothes for the winter. I will clearly live in slobs for most of Nov and Dec, but when I come to go back to work (hopefully Jan) I won't have anything to wear and there is no way I'd tackle the Jan sales feeling 100% so I wouldn't dream of doing it post op. I got a few nice Clinique bits as well - I doubt I'm going to feel like / be able to do the full cleanse, tone, moisturise routine but maybe my Mum will do it for me. I bought some body lotion and hand cream as well cos your skin gets so dry in hospital - again a job for my Mum or OH. (I haven't told him yet - something for him to look forward to!)
Friday night we went to the OH's cousin's house for his wife's bday (check out all those correctly placed apostrophes little bro?!) - they cooked for 18 people which was very impressive. We had a very civilised evening as we didn't really feel up for partying, but I was really glad that we went and we met some really nice people and I didn't have to talk about the op, which was actually a godsend.
Saturday day we went and 'got organised' - we got some keys cut for family members that need to be able to pop in when I'm back and we got some bday cards and presents for people that will have birthdays while I'm poorly. It was overall a pretty successful trip. I freaked out round the shops a bit - it was all just too much. I can't explain why - I just get these waves of panic. They come on really suddenly and I feel like I'm going to burst. I had to go and sit down out of the way and sip water. The OH bought me some rescue remedy which I find really useful too. I suppose it's only natural but I'm used to being very in control of my feelings and my life.
After shopping, we then went to meet a fellow Chiari sufferer that I met online, for a coffee. It was brilliant. Just to speak to someone else with the same illness was great - I suddenly didn't feel so alone. Previously I'd felt like the only one, a total weirdo, with some freak illness. Anyway she was a very positive person and that rubbed off on me. A few weeks ago, she had met someone else with the illness that had seen the same surgeon as I'm seeing and she was 9 weeks post op. On the whole, she had apparently had a complication-free recovery, apart from sickness. So that was good to hear.
My top fears around the op at the moment are:
- The brain surgery generally (and the serious possible complications - meningitis, coma, paralysis, death)
- Getting the sickness (if they disturb the 'vomit centre' which is an area in the brain close to where they are operating, then this can add around 4 weeks to your recovery)
- Being catherterised (sp!) (they say that will be 3-5 days - until you can get up and take yourself to the toilet basically)
- Bed baths (again for 3-5 days depending on how quickly you recover)
- Being hooked up to lots of machines
- The 'drain' which is a tube connected to your brain/head under the skin (I believe it acts like an overflow pipe if there's any problems with the new CS flow)
- My family being really upset at seeing me in intensive care
- Not being able to communicate
- Waking up during the op (as I will be face down on the bed - how will they know! Yes, I know rationally that they'll monitor my heart beat!)
- Not being able to eat / my wheat allergy
- The part-head shaving thing
- Staples / big scar / stitches
- The pain
- Having to be on morphine again
Actually, that's quite a lot. Hang on, I've majorly digressed from the positive things that have happened this week!
Sat evening we went to my parents for dinner which was really nice. Today we went to lunch with close friends and although I don't think I was particularly good company, it was great to see them and get lots of hugs which were much needed. This evening I caught up with X Factor and Strictly which took my mind off things for a few hours, for which I was really grateful for. I cannot believe how DARK it is now the clocks have gone back (or is it forward - I don't get it, just leave them damn well alone) - I was ready to go to bed at 5.30pm - I thought it was about midnight!
Well accounting my most recent happenings have done nothing to lift my mood. I am basically a grumpy shit today. Therefore I am going to head off to bed soon. I have had enough of today really. I'm about halfway through a Martina Cole novel - so I'll try and get engrossed in that, then stick on one of my meditation apps and pray this mood has shifted tomorrow.
I was thinking my life has been pretty mad over the last few years: 2009 I got married, 2010 I ran the London marathon and in 2011 I am having brain surgery. Not to mention I had Endometriosis surgery in Feb this year too. But I don't like to moan! Two ops in a year - seriously!? But I have to remind myself that there are people a lot worse off than. me. Obviously there have been other things going on, but they are some high / low lights. On that note, I really am going to bed now. Hang on...
I would like to finish on this - if I hear ONE more thing about effing ZUMBA, I will scream. I don't know why it winds me up, but it does. There was a demo in the shopping centre we went to on Sat, I've just seen an ad about it on the TV, it's everywhere and has been for months. Maybe it's the over-cheerful cheering when I feel like punching everyone in the face or perhaps (and more likely) it's because I am hugely jealous that a) they can do exercise and I'm not allowed at the moment b) that they are co-ordinated enough to do Zumba which I am not.
Right. Bed.
S x
Monday, 24 October 2011
The Power of Positive Thinking
It's been a good day today. I've been a bit of a ditsy blonde today, but that's OK. I can laugh at myself. In fact I have already written this entry once and lost it, so I don't think this is as entertaining as the original one, but hopefully it will raise a smile somewhere!
It started when my new car was delivered and I ended up having to call my OH to find out where reverse gear was! The delivery guy had given me the 'briefing', but I can honestly say I can't remember any of it and none of it was useful sadly. I finally plucked up enough courage to drive it (and by that I mean move it 200m to a better parking space) after lunch. The parking 'space' was so large you would really just call it the street, generally. However, I couldn't find reverse, so every time I attempted to go backwards to straighten up, I went forwards. Until eventually I was about 1cm from the bumper of a rather nice BMW and I was starting to panic - one more false move and it could be all over before the car has done 20 miles! Our street is very busy during the day with builders and workman and our neighbour was sat at the window at her computer, so I literally felt like the whole world was watching me trying to park this car. I thought 'that serves you right for being so flash with your brand new Audi, you should've got an old banger and been happy with that.' There I was trying to work out what would be less embarrassing - asking one of the builders or a neighbour to help me park the car or to call my OH. Or perhaps I could get away with just leaving it?
Anyway I called my other half and he burst out laughing, but that was OK because I did too. Although I was concerned now that it would be just my luck that a police officer would drive by and arrest me for using my phone in the car! So apparently reverse is push down and all the way over. About the only combination I hadn't tried. I mean it's ridiculous, why is reverse just not in the same place in every car?! And don't even get me started about the handbrake... It's a button - what! Why? (But I actually love it).
I should explain at this point that I have never really been a huge fan of driving. I had 4 driving instructors (or was it 5), I used to HIDE from them and beg my Mum to tell them I wasn't there, I even sold my first car (a v cute mini) because I hated driving so much. I used to have to wear vest tops in December because of the profuse sweating that ensued whenever I got behind the wheel. It's only really since I had 2 years driving my lovely (beat up) Astra, which was the first car I bought myself and more recently 3 years of driving the Focus, that I can actually get in a vehicle and drive without the histrionics and drama. So getting a new car is quite scary for me. I have test driven the Audi before, but it was about 8 months ago. I just don't understand how people (and it's usually boys in my experience) just get in cars and drive them. What! They're all so different. Anyway, surely it's just about the 4-rings and the colour? OK I know, I deserved it for that comment alone.
I just care/d so much what people think/thought of my driving. It's like I have to be the world's best driver from day zero, otherwise I have no interest in ever driving again. And to be honest it's like that with everything in my life. Hence the reason that I didn't really play any sport at school (that and I was genuinely rubbish).Yes, I know I am sick in the head... actually it's funny you should mention that. I have got a bit better with age, but I'll always revert to type occasionally.
Anyway, the car is great and I'm really lucky. I can't wait to take it out later!
However it did get me thinking. These events would probably have left me in tears or at the very least a total tantrum, if it had happened last week, given my less than positive mood the last few days. But today I've practically felt like my old self again. The self before I was defined by the diagnoses. And I don't think it's a coincidence that I listened to my 'Positive Thinking' app before bed last night. It was recommended to me by my SIL and they do say listen to it every night for 2-3 weeks, so I was quite surprised when I woke feeling so positive this morning and it's built throughout the day. I've used the Deep Sleep one by the same guy before and when I remember to use it, it does seem to help. I don't remember a lot from what it said - just that I put it on, muttered a few things and then I was in a deep sleep and I felt great this morning. I don't care if it is placebo.
My Mum popped over earlier and even when we talked through the procedure and the logistics of when I needed her to come and look after me etc (when the OH goes back to work) - it didn't get me down or freaked out. I just feel like I have some of my resilience back, which is nice (understatement). I think when you feel low like that, you can't even find any imagination to come up with ideas to get yourself out of it. My normal response would be to go for a run, but I'm not allowed to do that until after the surgery. But it feels like I do have another answer. I do meditate quite a lot anyway, but I think I just forgot that actually all the tools I need to get through this are within me. People get through worse situations after all. There's also one other app which I got a few weeks ago and it's called 'Healing' so I intend to use that one when I come out of hospital. Maybe there is something in this Positive Thinking milarkey!
I've got through quite a lot of work today and had a couple of successful conference calls earlier, so overall quite productive. An early start tomorrow (to ensure the least number of other drivers are on the road of course) and a busy week too.
The next couple of weeks are really busy for us actually seeing friends and family before the op, which is great. We have my brother and his lovely gf coming over tomorrow night and I'm planning to make Shepherd's Pie. His gf is a brilliant cook, so I will feel the pressure and probably screw something up... I mean it will be a delicious meal (see positive thinking), but I have to remember that they're coming to see us, not judge my culinary skills. Plus it's not 'Masterchef', Sarah, get a grip.
Right I'm off to 'Fire up the Quattro!'
S x
P.S. Thank you for all the messages of support and the 2 people that have joined this site!!
It started when my new car was delivered and I ended up having to call my OH to find out where reverse gear was! The delivery guy had given me the 'briefing', but I can honestly say I can't remember any of it and none of it was useful sadly. I finally plucked up enough courage to drive it (and by that I mean move it 200m to a better parking space) after lunch. The parking 'space' was so large you would really just call it the street, generally. However, I couldn't find reverse, so every time I attempted to go backwards to straighten up, I went forwards. Until eventually I was about 1cm from the bumper of a rather nice BMW and I was starting to panic - one more false move and it could be all over before the car has done 20 miles! Our street is very busy during the day with builders and workman and our neighbour was sat at the window at her computer, so I literally felt like the whole world was watching me trying to park this car. I thought 'that serves you right for being so flash with your brand new Audi, you should've got an old banger and been happy with that.' There I was trying to work out what would be less embarrassing - asking one of the builders or a neighbour to help me park the car or to call my OH. Or perhaps I could get away with just leaving it?
Anyway I called my other half and he burst out laughing, but that was OK because I did too. Although I was concerned now that it would be just my luck that a police officer would drive by and arrest me for using my phone in the car! So apparently reverse is push down and all the way over. About the only combination I hadn't tried. I mean it's ridiculous, why is reverse just not in the same place in every car?! And don't even get me started about the handbrake... It's a button - what! Why? (But I actually love it).
I should explain at this point that I have never really been a huge fan of driving. I had 4 driving instructors (or was it 5), I used to HIDE from them and beg my Mum to tell them I wasn't there, I even sold my first car (a v cute mini) because I hated driving so much. I used to have to wear vest tops in December because of the profuse sweating that ensued whenever I got behind the wheel. It's only really since I had 2 years driving my lovely (beat up) Astra, which was the first car I bought myself and more recently 3 years of driving the Focus, that I can actually get in a vehicle and drive without the histrionics and drama. So getting a new car is quite scary for me. I have test driven the Audi before, but it was about 8 months ago. I just don't understand how people (and it's usually boys in my experience) just get in cars and drive them. What! They're all so different. Anyway, surely it's just about the 4-rings and the colour? OK I know, I deserved it for that comment alone.
I just care/d so much what people think/thought of my driving. It's like I have to be the world's best driver from day zero, otherwise I have no interest in ever driving again. And to be honest it's like that with everything in my life. Hence the reason that I didn't really play any sport at school (that and I was genuinely rubbish).Yes, I know I am sick in the head... actually it's funny you should mention that. I have got a bit better with age, but I'll always revert to type occasionally.
Anyway, the car is great and I'm really lucky. I can't wait to take it out later!
However it did get me thinking. These events would probably have left me in tears or at the very least a total tantrum, if it had happened last week, given my less than positive mood the last few days. But today I've practically felt like my old self again. The self before I was defined by the diagnoses. And I don't think it's a coincidence that I listened to my 'Positive Thinking' app before bed last night. It was recommended to me by my SIL and they do say listen to it every night for 2-3 weeks, so I was quite surprised when I woke feeling so positive this morning and it's built throughout the day. I've used the Deep Sleep one by the same guy before and when I remember to use it, it does seem to help. I don't remember a lot from what it said - just that I put it on, muttered a few things and then I was in a deep sleep and I felt great this morning. I don't care if it is placebo.
My Mum popped over earlier and even when we talked through the procedure and the logistics of when I needed her to come and look after me etc (when the OH goes back to work) - it didn't get me down or freaked out. I just feel like I have some of my resilience back, which is nice (understatement). I think when you feel low like that, you can't even find any imagination to come up with ideas to get yourself out of it. My normal response would be to go for a run, but I'm not allowed to do that until after the surgery. But it feels like I do have another answer. I do meditate quite a lot anyway, but I think I just forgot that actually all the tools I need to get through this are within me. People get through worse situations after all. There's also one other app which I got a few weeks ago and it's called 'Healing' so I intend to use that one when I come out of hospital. Maybe there is something in this Positive Thinking milarkey!
I've got through quite a lot of work today and had a couple of successful conference calls earlier, so overall quite productive. An early start tomorrow (to ensure the least number of other drivers are on the road of course) and a busy week too.
The next couple of weeks are really busy for us actually seeing friends and family before the op, which is great. We have my brother and his lovely gf coming over tomorrow night and I'm planning to make Shepherd's Pie. His gf is a brilliant cook, so I will feel the pressure and probably screw something up... I mean it will be a delicious meal (see positive thinking), but I have to remember that they're coming to see us, not judge my culinary skills. Plus it's not 'Masterchef', Sarah, get a grip.
Right I'm off to 'Fire up the Quattro!'
S x
P.S. Thank you for all the messages of support and the 2 people that have joined this site!!
Sunday, 23 October 2011
Big Sleeps
I am happy to report that I have woken up in a much better place today, mentally. I slept for 10 hours and finally feel like I've actually had some rest.We were at a friend's for dinner last night and discussing that very subject - I don't quite know when it happened, but I used to be straight up at my alarm; I was not someone who struggled to get up or someone that repeatedly pressed snooze. Now, I NEVER feel like I've had enough rest and I find myself longing for the weekends to catch up on sleep. I can only imagine how people with screaming babies cope. Perhaps the lack of energy is down to the thyroid and that's why it's been a gradual thing that's crept up on me. Perhaps it's part of the Chiari, who knows. I don't suppose I'll ever know but I hope it goes away after the op.
So back to last night. We had a gorgeous steak for dinner and amazing pomegrante/grapefruit juices for me and the others had a few good bottles of red. Actually thinking about it, perhaps I was fixed by the iron in the steak, but it was delicious and we had a really nice night. I also got some lovely flowers and really thoughtful presents for my upcoming op, which I was really touched by. It was a really nice evening and really lifted my spirits. Thanks guys!
We also went out for a curry on Friday night with a group of our mates, which was very amusing when my OH and a friend ordered the hottest curry in the world. I went for a Madras but it wasn't hot in the slightest, I was a bit disappointed. I was never really a curry fan until a few years ago when my OH got me into liking them. Then we went to Sri Lanka and everything you could get to eat was ridiculously spicy. So we sort of got used to that level of heat for two weeks and we've never been the same since! I'm happy to report therefore that we are out again this evening with other friends for another curry. Bring it on!
So a weird fact about me. I am obsessed by muscle twitches. I get spasms in my muscles every day in multiple locations: legs, arms, feet, tongue, tummy, hands, neck, back etc. I've always had them since I can remember so I've never thought anything of it. But they fascinate me. I have been known to sit for hours watching a twitch. And if someone else gets one it's even more fascinating! I know that is very strange, I am a complete freak, but there we are. Then during my research on the internet about Chiari in general, I happened to come across someone saying that they had muscle twitches which went away after their op. Interesting. We'll have to see. I am sure you will await the update on this with baited breath!
Right. I have a lot to do today before the curry this eve - I need to catch up on X Factor, Strictly, Jonathon Ross etc. And I haven't even had a shower or breakfast yet and it's 11am. BLISS.
Sarah x
So back to last night. We had a gorgeous steak for dinner and amazing pomegrante/grapefruit juices for me and the others had a few good bottles of red. Actually thinking about it, perhaps I was fixed by the iron in the steak, but it was delicious and we had a really nice night. I also got some lovely flowers and really thoughtful presents for my upcoming op, which I was really touched by. It was a really nice evening and really lifted my spirits. Thanks guys!
We also went out for a curry on Friday night with a group of our mates, which was very amusing when my OH and a friend ordered the hottest curry in the world. I went for a Madras but it wasn't hot in the slightest, I was a bit disappointed. I was never really a curry fan until a few years ago when my OH got me into liking them. Then we went to Sri Lanka and everything you could get to eat was ridiculously spicy. So we sort of got used to that level of heat for two weeks and we've never been the same since! I'm happy to report therefore that we are out again this evening with other friends for another curry. Bring it on!
So a weird fact about me. I am obsessed by muscle twitches. I get spasms in my muscles every day in multiple locations: legs, arms, feet, tongue, tummy, hands, neck, back etc. I've always had them since I can remember so I've never thought anything of it. But they fascinate me. I have been known to sit for hours watching a twitch. And if someone else gets one it's even more fascinating! I know that is very strange, I am a complete freak, but there we are. Then during my research on the internet about Chiari in general, I happened to come across someone saying that they had muscle twitches which went away after their op. Interesting. We'll have to see. I am sure you will await the update on this with baited breath!
Right. I have a lot to do today before the curry this eve - I need to catch up on X Factor, Strictly, Jonathon Ross etc. And I haven't even had a shower or breakfast yet and it's 11am. BLISS.
Sarah x
Thursday, 20 October 2011
A Bit About My Day
Well... I'm feeling a bit wobbly today. I think I am hormonal which doesn't help and I've been working from home today so being alone hasn't helped either. Although it's one of those days where I don't think I'd want to be around lots of people and I don't think I want to be alone either. I actually feel like I've been transported to a different planet - a feeling I had when I was first told that I'd have to have surgery. It literally feels like everything I knew about life and this world is now upside down. It's hard to explain. I know things could be worse, I know they could, I'm still just trying to make sense of it I suppose.
I told a friend that to start with I felt like I was grieving and I couldn't understand why I would feel like that. I could not stop crying, which is very unlike me. He told me it was because I am grieving the world and my life as I used to know it. And that makes a LOT of sense.
I also have these mixed feelings of a) let's get on with the op right now - because the sooner I have the damn thing, the sooner I can recover and then b) freaking out that I've got to have my head cut open and the cover of my brain expanded and vertebrae of my spine removed/filed at all. Then I get major guilt because I am LUCKY that they have found this thing before it does any damage. But dare I say it - I don't feel very lucky today. There I said it. What an ungrateful cow. I can't even begin to imagine how people cope with terminal diagnoses. I literally don't deserve the amazing comments I've had re this blog. Friends have been saying how brave I am and I just wanted to confirm that I am really not. Some days I am braver than others. Today I am a total coward.
I've just been sitting writing out some 'Handover Notes' for work and it occurred to me I ought to do some for home as well. And I suppose understandably that's made me feel a bit emotional. It's not that my better half isn't totally capable of managing the house, he is. It's just because I am a total control freak. I do all of our banking as the finances are one of my strengths and by his own admission not one of his (although anyone that has known me for more than 10 years will know this absolutely never used to be the case - maybe that explains why I am totally obsessed about checking the bank accounts now). On the upside I won't have to worry about the cleaning - he is meticulously clean - that is one of his strengths and not mine I'm afraid. I just have no interest in cleaning the house. There, I said that too. Perhaps I can't be brave today but I can be honest. I do the clothes washing though and the food shopping and cooking. And I am getting better at washing up... Ironing - that's probably a never though.
My new car comes on Monday (v exciting) - but instead of being exciting I'm finding myself having to make a note of the company to call if anything goes wrong with it or someone kicks a wing mirror off or such like, so my husband knows who to call (will call him OH for other half from now on). Still, at least I will get to drive it a few times before my op.
I did find a great website today www.chiari.co.uk - which is the one and only online forum I've found for sufferers in the UK. At first it felt amazing, like I was no longer alone with this freak illness. But there were also some real horror stories on there. And I know that people only tend to write when they've had bad experiences, but still. A lot of people had taken years to get diagnosed and their stories of anguish and being told they were 'depressed' and there was nothing wrong with them really upset me. Quite a few people hadn't had symptoms before a minor trauma (e.g. a car accident - a bit like the one I had at the end of June where someone hit me in the rear). A few people had had lots of symptoms after the op and some were still off work - one lady was 17 months post op and still off work. It was a real mix though - one person had had a year off, another couldn't go back to work, another 5 months etc. But I didn't really see any that had gone back after the allotted 6 weeks which my surgeon had advised. Hey, perhaps I can break that trend and be the first on the boards!
Cue Positive Thinking meditation app tonight.
Speaking of work - that's also quite stressful as we're going through a re-structure and we are due to find out during November whether we have a job or not and where we fit in the new team etc. I, of course will either still be in hospital, or recovering at home. So clearly not in any state to interview for my own job for example. Normally I am pretty resilient to these sorts of things, I just think again, it's out of my control and I'm going to pretty incapacitated when the decisions are made, so that's quite hard to handle.
Right that's enough moaning for one day. Off to make Cheese, Onion and Potato soup for dinner. See, told you I could cook ;-)
I promise this blog won't be all moaning every day, but for now it's a great outlet for what I'm feeling.
S x
I told a friend that to start with I felt like I was grieving and I couldn't understand why I would feel like that. I could not stop crying, which is very unlike me. He told me it was because I am grieving the world and my life as I used to know it. And that makes a LOT of sense.
I also have these mixed feelings of a) let's get on with the op right now - because the sooner I have the damn thing, the sooner I can recover and then b) freaking out that I've got to have my head cut open and the cover of my brain expanded and vertebrae of my spine removed/filed at all. Then I get major guilt because I am LUCKY that they have found this thing before it does any damage. But dare I say it - I don't feel very lucky today. There I said it. What an ungrateful cow. I can't even begin to imagine how people cope with terminal diagnoses. I literally don't deserve the amazing comments I've had re this blog. Friends have been saying how brave I am and I just wanted to confirm that I am really not. Some days I am braver than others. Today I am a total coward.
I've just been sitting writing out some 'Handover Notes' for work and it occurred to me I ought to do some for home as well. And I suppose understandably that's made me feel a bit emotional. It's not that my better half isn't totally capable of managing the house, he is. It's just because I am a total control freak. I do all of our banking as the finances are one of my strengths and by his own admission not one of his (although anyone that has known me for more than 10 years will know this absolutely never used to be the case - maybe that explains why I am totally obsessed about checking the bank accounts now). On the upside I won't have to worry about the cleaning - he is meticulously clean - that is one of his strengths and not mine I'm afraid. I just have no interest in cleaning the house. There, I said that too. Perhaps I can't be brave today but I can be honest. I do the clothes washing though and the food shopping and cooking. And I am getting better at washing up... Ironing - that's probably a never though.
My new car comes on Monday (v exciting) - but instead of being exciting I'm finding myself having to make a note of the company to call if anything goes wrong with it or someone kicks a wing mirror off or such like, so my husband knows who to call (will call him OH for other half from now on). Still, at least I will get to drive it a few times before my op.
I did find a great website today www.chiari.co.uk - which is the one and only online forum I've found for sufferers in the UK. At first it felt amazing, like I was no longer alone with this freak illness. But there were also some real horror stories on there. And I know that people only tend to write when they've had bad experiences, but still. A lot of people had taken years to get diagnosed and their stories of anguish and being told they were 'depressed' and there was nothing wrong with them really upset me. Quite a few people hadn't had symptoms before a minor trauma (e.g. a car accident - a bit like the one I had at the end of June where someone hit me in the rear). A few people had had lots of symptoms after the op and some were still off work - one lady was 17 months post op and still off work. It was a real mix though - one person had had a year off, another couldn't go back to work, another 5 months etc. But I didn't really see any that had gone back after the allotted 6 weeks which my surgeon had advised. Hey, perhaps I can break that trend and be the first on the boards!
Cue Positive Thinking meditation app tonight.
Speaking of work - that's also quite stressful as we're going through a re-structure and we are due to find out during November whether we have a job or not and where we fit in the new team etc. I, of course will either still be in hospital, or recovering at home. So clearly not in any state to interview for my own job for example. Normally I am pretty resilient to these sorts of things, I just think again, it's out of my control and I'm going to pretty incapacitated when the decisions are made, so that's quite hard to handle.
Right that's enough moaning for one day. Off to make Cheese, Onion and Potato soup for dinner. See, told you I could cook ;-)
I promise this blog won't be all moaning every day, but for now it's a great outlet for what I'm feeling.
S x
Wednesday, 19 October 2011
A Bit About My Diagnoses
According to the internet Syringomeylia affects as little as 8 people in 100,000 in the US. And Chiari about 1 in 1,000. However the Chiari figure at 1 in 1,000 is much more than in previous years suggesting that it's not perhaps as rare as they originally thought but more because of the avaibility of MRI scans. My Chiari was found totally by accident and then the Syringomeylia was found as part of a follow up MRI. I am incredibly grateful that these conditions were found and diagnosed as it seems so many people wait years and go through pain and heartache for an accurate diagnosis.
I started having migraine like pains at the end of the first week of August. I had had one migraine in the April of this year, but before that never. I had put it down to hormones (I suffer with Endometriosis and PCOS as well - more on those another day!) as it seemed to coincide with ovulation. The migraine in April lasted 3 days and was pretty debilitating but it was what I understood to be a pretty standard migraine - pain and nausea. I went to bed in a dark room and waited for it to pass.
This time around the pain didn't start off as badly, as I remember I was able to make it down to the GP. She gave me a prescription and said there was no point taking the medication this time around as it had to be taken within half an hour of the symptoms but it would help for the future. At that point I just felt a bit sick and had the head pain. Later that day I was physically sick and so I went to bed early, in the hope that I might be able to sleep it off.
Then on the Saturday, I was awoken with awful pain on a par with the time before. It got quite rapidly worse. This time I had some numbness down my right hand side and I dropped a bottle of water that I had been holding for no apparent reason. The sickness also got worse until I was unable to keep anything down. So we went to the out of hours GP this time and she gave me an anti-sickness jab and IV painkillers. I went to the surgery with my hood up and sunglasses on - I wonder what they thought! I remember asking whether we should go to A&E and being told that they probably wouldn't admit me with a migraine. As I left the surgery about 2hrs later, I did feel marginally better but I knew that I was nowhere near 100% and that I didn't think we should be going home. We did go home however and I tried to watch a film with my husband but I couldn't focus and the light was too bright. So off I went to bed at 8 or 9pm. Needless to say the usual Ibruprofen and Paracetamol weren't touching the pain and I was throwing everything up anyway, so it was all I could do to try and get some sleep.
Sunday morning we were woken in the early hours with my husband's work. He was being called in and after a lot of persuading I told him I felt much better and he should go in. I went back to sleep, only to be woken a few hours later by agonising head pain, numbness down my right hand side again and pins and needles in my face and tongue! I was worried I was having a stroke as I wasn't able to carry out everyday functions like make a phone call or speak. It was like my brain was telling my body what to do but it wouldn't/couldn't do it. I was terrified.
In the end my in laws and brother came around. This time I was taken to A&E. I was there for about 5 hours in total - I was put on a drip, given more anti-sickness and painkillers and bloods were taken. The drip helped a lot and I did feel much better on leaving the hospital early that evening. I even managed to eat some dinner. Unfortunately I quickly went downhill and was then violently sick and the head pain returned with a vengeance. So back to hospital I went and there I stayed for 4 nights. I was put on Morphine which didn't touch the pain, I was given an anti-migraine injection which was agony and then felt like I was having a heart attack (I am apparently allergic!) and couldn't stop being sick despite the anti sickness. It was awful. And scary.
During my first stay they did the MRI scan. Actually there were concerned about a tumour or blood clot but they had said they were doing it to rule it out as the head pain had been going on so long. They were also not that concerned initially as my Mum, Brother and Gdad all suffer with migraine.
Anyway they found the Chiari and we were shocked. Although I knew from how bad the pain had been that there was no way they wouldn't find anything wrong. The Dr that gave us the diagnosis had never seen a patient with the condition and really didn't know anything about it. At that time we were told that it was an incidental finding and not to be too concerned. They made an appt for me to see the Neurologist in her out patient clinic on her return from holiday.
If only that had have been the end of it!
I was back in hospital a further 4 times, so I was in for the majority of August, the head pain getting worse and worse each time. I had continual pain for 4 weeks in total, with severe spikes where they struggled to get my pain under control - I'd spend 5-6-7 hours in absolute agony. I was taken by ambulance twice - once on gas and air and the other time unable to speak at all. Again it felt like something had shut off in my brain. They kept asking me questions and I was trying everything to answer but I just couldn't get the words out. When I mustered up all my power I came out with absolute nonsense! I was really well looked after in hospital but the team were unable to provide any answers as they were awaiting the Neurologists return as it was out of their remit really.
Once she was back and I filled her in on what had been happening she was able to prescribe a drug to get the head pain under control which it did eventually (until I had to come off of it because they found I had an overactive thyroid!) Before I left hospital they requested that I go back and have another MRI, this time on my spine - we presumed they were checking I didn't have Syringomeylia although that was from our own Googling! And of course they found that I did have it, much to everyone's total shock.
As I say, I am very lucky to have had such excellent care. It was the worst period in my life to date by a mile. I can still remember the agony of the head pain like it was yesterday. I think I always will. It was so bad I wanted to die. That sounds like an exaggeration but I promise you it's not. I also have fantastic friends and family who continue to support me every step of the way.
I think one of the hardest things has been feeling like the only one. And it's hugely frustrating when you call NHS Direct or an unknown GP and you have to start from the beginning. You just don't know where to start. And it really takes it out of you. Today is one of those days where I don't feel like I have the energy for anything other than sitting up straight. But already this blog has started to give me a bit of strength and hope. I hope it will be a support to other sufferers as well.
S x
I started having migraine like pains at the end of the first week of August. I had had one migraine in the April of this year, but before that never. I had put it down to hormones (I suffer with Endometriosis and PCOS as well - more on those another day!) as it seemed to coincide with ovulation. The migraine in April lasted 3 days and was pretty debilitating but it was what I understood to be a pretty standard migraine - pain and nausea. I went to bed in a dark room and waited for it to pass.
This time around the pain didn't start off as badly, as I remember I was able to make it down to the GP. She gave me a prescription and said there was no point taking the medication this time around as it had to be taken within half an hour of the symptoms but it would help for the future. At that point I just felt a bit sick and had the head pain. Later that day I was physically sick and so I went to bed early, in the hope that I might be able to sleep it off.
Then on the Saturday, I was awoken with awful pain on a par with the time before. It got quite rapidly worse. This time I had some numbness down my right hand side and I dropped a bottle of water that I had been holding for no apparent reason. The sickness also got worse until I was unable to keep anything down. So we went to the out of hours GP this time and she gave me an anti-sickness jab and IV painkillers. I went to the surgery with my hood up and sunglasses on - I wonder what they thought! I remember asking whether we should go to A&E and being told that they probably wouldn't admit me with a migraine. As I left the surgery about 2hrs later, I did feel marginally better but I knew that I was nowhere near 100% and that I didn't think we should be going home. We did go home however and I tried to watch a film with my husband but I couldn't focus and the light was too bright. So off I went to bed at 8 or 9pm. Needless to say the usual Ibruprofen and Paracetamol weren't touching the pain and I was throwing everything up anyway, so it was all I could do to try and get some sleep.
Sunday morning we were woken in the early hours with my husband's work. He was being called in and after a lot of persuading I told him I felt much better and he should go in. I went back to sleep, only to be woken a few hours later by agonising head pain, numbness down my right hand side again and pins and needles in my face and tongue! I was worried I was having a stroke as I wasn't able to carry out everyday functions like make a phone call or speak. It was like my brain was telling my body what to do but it wouldn't/couldn't do it. I was terrified.
In the end my in laws and brother came around. This time I was taken to A&E. I was there for about 5 hours in total - I was put on a drip, given more anti-sickness and painkillers and bloods were taken. The drip helped a lot and I did feel much better on leaving the hospital early that evening. I even managed to eat some dinner. Unfortunately I quickly went downhill and was then violently sick and the head pain returned with a vengeance. So back to hospital I went and there I stayed for 4 nights. I was put on Morphine which didn't touch the pain, I was given an anti-migraine injection which was agony and then felt like I was having a heart attack (I am apparently allergic!) and couldn't stop being sick despite the anti sickness. It was awful. And scary.
During my first stay they did the MRI scan. Actually there were concerned about a tumour or blood clot but they had said they were doing it to rule it out as the head pain had been going on so long. They were also not that concerned initially as my Mum, Brother and Gdad all suffer with migraine.
Anyway they found the Chiari and we were shocked. Although I knew from how bad the pain had been that there was no way they wouldn't find anything wrong. The Dr that gave us the diagnosis had never seen a patient with the condition and really didn't know anything about it. At that time we were told that it was an incidental finding and not to be too concerned. They made an appt for me to see the Neurologist in her out patient clinic on her return from holiday.
If only that had have been the end of it!
I was back in hospital a further 4 times, so I was in for the majority of August, the head pain getting worse and worse each time. I had continual pain for 4 weeks in total, with severe spikes where they struggled to get my pain under control - I'd spend 5-6-7 hours in absolute agony. I was taken by ambulance twice - once on gas and air and the other time unable to speak at all. Again it felt like something had shut off in my brain. They kept asking me questions and I was trying everything to answer but I just couldn't get the words out. When I mustered up all my power I came out with absolute nonsense! I was really well looked after in hospital but the team were unable to provide any answers as they were awaiting the Neurologists return as it was out of their remit really.
Once she was back and I filled her in on what had been happening she was able to prescribe a drug to get the head pain under control which it did eventually (until I had to come off of it because they found I had an overactive thyroid!) Before I left hospital they requested that I go back and have another MRI, this time on my spine - we presumed they were checking I didn't have Syringomeylia although that was from our own Googling! And of course they found that I did have it, much to everyone's total shock.
As I say, I am very lucky to have had such excellent care. It was the worst period in my life to date by a mile. I can still remember the agony of the head pain like it was yesterday. I think I always will. It was so bad I wanted to die. That sounds like an exaggeration but I promise you it's not. I also have fantastic friends and family who continue to support me every step of the way.
I think one of the hardest things has been feeling like the only one. And it's hugely frustrating when you call NHS Direct or an unknown GP and you have to start from the beginning. You just don't know where to start. And it really takes it out of you. Today is one of those days where I don't feel like I have the energy for anything other than sitting up straight. But already this blog has started to give me a bit of strength and hope. I hope it will be a support to other sufferers as well.
S x
A Bit About My Brain
As I've mentioned in my first post, I have recently been diagnosed with Chiari Malformation (type 1), which is a rare brain condition. And I have since discovered I also have an even more rare spinal condition (which is related), called Syringomeylia. I am going to attempt to describe both conditions, but I would like to say now that I am in no way a medical professional, the descriptions are purely based on my own research and experiences.
Chiari Malformation is a condition where the cerebellum is positioned lower in the skull than it should be, so it actually sits into the spinal cord. From my research it is believed to be a condition that forms in the womb, although they don't seem to know whether it's the brain or skull that doesn't form correctly. The brain is basically too big for the skull, or the skull is too small for the brain - whatever way you want to look at it.
In my case the cerebellum is acting like a plug in the top of the spinal cord, so the spinal fluid can't move around the body as it should do. I understand that this can sometimes cause fluid on the brain (hydrocephalus) or even more rarely it can re-direct the fluid into the spinal canal, causing a cyst in the centre of the spinal cord known as a Syrinx and the condition being called Syringomeylia. This in itself is a very serious symptom as Syringomeylia is a degenerative spinal condition that if left untreated will lead to paralysis.
Often Doctors are quite torn about whether to operate on someone with Chiari and no symptoms such as pain or headaches, like myself. The deciding factor can sometimes be whether the person has a Syrinx or not. Hence why they want to operate on me even though I don't have any pain at the moment. My Neurosurgeon is unsure of how long my condition would take to get worse - it could be a couple of months, or I could go my whole life until I am 85yrs without problems, they just don't know. All they do know is that sooner or later the Syrinx will grow and it will cause paralysis. By the time it causes me pain in my arms/hands/wrists it would be too late to operate.
For me that's actually quite comforting because it means there is no tough decision for me to make around whether to have the surgery or not. It's just not up for discussion.
So 2.5 weeks and counting.
S x
Chiari Malformation is a condition where the cerebellum is positioned lower in the skull than it should be, so it actually sits into the spinal cord. From my research it is believed to be a condition that forms in the womb, although they don't seem to know whether it's the brain or skull that doesn't form correctly. The brain is basically too big for the skull, or the skull is too small for the brain - whatever way you want to look at it.
In my case the cerebellum is acting like a plug in the top of the spinal cord, so the spinal fluid can't move around the body as it should do. I understand that this can sometimes cause fluid on the brain (hydrocephalus) or even more rarely it can re-direct the fluid into the spinal canal, causing a cyst in the centre of the spinal cord known as a Syrinx and the condition being called Syringomeylia. This in itself is a very serious symptom as Syringomeylia is a degenerative spinal condition that if left untreated will lead to paralysis.
Often Doctors are quite torn about whether to operate on someone with Chiari and no symptoms such as pain or headaches, like myself. The deciding factor can sometimes be whether the person has a Syrinx or not. Hence why they want to operate on me even though I don't have any pain at the moment. My Neurosurgeon is unsure of how long my condition would take to get worse - it could be a couple of months, or I could go my whole life until I am 85yrs without problems, they just don't know. All they do know is that sooner or later the Syrinx will grow and it will cause paralysis. By the time it causes me pain in my arms/hands/wrists it would be too late to operate.
For me that's actually quite comforting because it means there is no tough decision for me to make around whether to have the surgery or not. It's just not up for discussion.
So 2.5 weeks and counting.
S x
A Bit About Me
I started a blog called 'Sarah On Running' last year and decided to carry on the theme by calling this one 'Sarah On The Brain'. The reason behind it is I've recently been diagnosed with a rare brain condition called Chiari Malformation (type 1) and I have found myself needing an outlet for some of the things I've been going through, plus more importantly I want to raise awareness of the condition in the UK.
So a bit about me. I'm 29yrs old, married, I live in the UK in a rented cottage and I work in Marketing. I am going in for surgery in 2.5 weeks, so I'm not sure how much I will be able to blog in the weeks immediately afterwards but we'll see.
Off to post about Chiari now.
S x
*Sadly I wasn't able to get past post no.1 on running due to my health issues, but I hope to be able to resume it again soon.
So a bit about me. I'm 29yrs old, married, I live in the UK in a rented cottage and I work in Marketing. I am going in for surgery in 2.5 weeks, so I'm not sure how much I will be able to blog in the weeks immediately afterwards but we'll see.
Off to post about Chiari now.
S x
*Sadly I wasn't able to get past post no.1 on running due to my health issues, but I hope to be able to resume it again soon.
Subscribe to:
Comments (Atom)