Hi all,
Well I've not posted for a long time, largely because I was too scared to admit how well things were going in case I jinxed it but looks like I needn't have worried as it wouldn't have mattered - things have gone a bit down hill anyway!
So on the positive side, I had about 6-8 weeks that were really brilliant. OH and I went on a short UK break and I took a real step forwards. It really felt like things were back on track; I went back to full time work and I started back at the gym on a light programme.
I wouldn't say I was waiting for things to go wrong but I wasn't complacent either - I think I was respectfully cautious. I even approached the gym with trepidation despite wanting to absolutely hammer it. I'd started a healthy eating programme as well, I was starting to lose weight (although not quick enough for my liking I was accepting of that!) and going to the gym before work and coping fine.
I had a really positive half year at work, which I was very proud of and things were looking up.
Then I'm not too sure what happened but the head pain returned with a vengence. When I first had the shunt fitted in January, I was warned that it could be normal to have head pain (low pressure) until things leveled out. When I first went back to work in Feb, the head pain would be there from first thing in the morning but gradually it faded until it started later and later in the day. There were a few weeks where the head pains would start in the evening and I'd have to go to bed at 8pm (laying flat eases it) but come the end of May I had stopped getting the pain totally.
It was like that for a couple of months and then for no reason they came back, starting in the morning and not really shifting. I contacted my neurosurgeon and at first we thought there might just be a blockage and it would right itself. Unfortunately after 2 weeks it still hadn't and things were getting worse. The pain being so bad it would be impossible to be upright. I felt like such a pain in the behind keep going back to my NS. I just wanted to know though whether it was to be expected - what this all part of recovery? Was it normal to take a step back before improving again etc? Or was there something wrong? I could totally hack it if it was part of recovery, but I just didn't want to leave it if it wasn't right. Gut instinct told me it wasn't right to have taken such a step backwards for no apparent reason.
And gut instinct was right. I had an MRI last week and it showed a thickening of the dura (covering of the brain) which I am reliably informed indicates chronic low pressure. Meaning the shunt had been over draining for some time. So when I said it felt like my brain was rattling around in my head / being pulled down my neck I wasn't actually that far from reality! I wasn't surprised there was something to blame as I just didn't feel right in myself and had got to the point where I was thinking about speaking to my boss about reducing my hours and I'd stopped going to the gym a few weeks before.
Anyway, I was quite matter of fact about it in the NS office - I would need another op, that was fine and not a surprise either. But it's a minor one this time in comparison to what I've been through really. Like with all ops, it's a rollercoaster because one minute I feel quite pragmatic about it and the next I'm feeling scared about being knocked out yet again. I jokingly said that perhaps I should donate my body to medical science - either that or I should just get a full body zip, it would definitely make things a lot easier.
In short the op is to fit an adjustable valve in the shunt so that if my CSF is the wrong level in future it can be adjusted without the need to have surgery - I think they just use magnets from outside the body. Which is awesome. I'm going to be like the bionic woman!
I haven't told many people about the op because partly I don't feel like I have the energy, but mainly because it's just a bit random ringing up my friends and family for a 3rd time and telling them I have to have another op. It's a bit like 'what else is new' - not that anyone would say that I'm sure! I know therefore though that I run the risk of upsetting people because I've not told them. But I can say here that it's not because I want to shut people out or that I don't care about them, it's just that I don't want to worry people all over again. This just seems to be our lives for the time being.
Mostly I just feel exhausted.
I have now got a lot of acceptance around the fact that actually if your body can't produce the correct levels of spinal fluid and you have a congenital brain condition, then you're not really that well. You might have good days, but ultimately it's quite serious. And that might sound very obvious to most people I think I've only really accepted that myself. I never really considered myself to be ill - just getting through each stage as it came, but it's gone on and on that now I need to accept it so I can move on. And as a result I've got some thinking to do about my current lifestyle in all respects. There is absolutely no point in planning anything that's for sure.
I did have quite a lot of fight about what I'm going to do when I get over this and I have to say right now there's not a lot of resource left right now. For anything. I had it in my mind that I would run the London Marathon again next year, for a brain charity. That seems utterly ludicrous now. Especially as I wanted to do it in 4hrs 30mins.... Maybe I just need to adapt the dream - either I just get round next year which would be an amazing achievement, or I keep the 4hrs 30mins target but put it back to 2014... Some might say I'm mad but I need to have something to focus on that takes my mind off how ill I am.
Perhaps that is why suddenly I feel TOTALLY shattered. Because I've reliquished a bit of fight and control around 'not being ill'. Right now it feels like the right thing to do to just accept where I am today and strip it right back to concentrating on one day at a time and getting better. Rather than trying to rush through it and being 110% before I'm actually healed. Anyway, I'm now too tired to think. Thank goodness I packed my hospital bag earlier otherwise goodness knows what I'd end up with in there if I had to do it now.
Thanks to all for the ongoing support, OH will post/text/call once I'm out tomorrow.
Sarah x
Sunday, 12 August 2012
Tuesday, 13 March 2012
A Bit About Recovery Right Now
So this is the first post in a while. I've just been ticking along, getting back to work and normal life. But I can't say that I am back to normal and it's only really dawning on me just how long that might take. I am feeling a bit down tonight actually. So I thought I'd get it all off my chest on here.
I cannot even comprehend that it's been 4 and a half months since my operation. It feels like it's been a long recovery to this point and I guess part of the reason is that I had a complication and so that extended the recovery period. I am used to doing everything at break neck speed and that included my expectations for recovery.
Each stage of recovery is challenging for different reasons. To begin with you're focussing on not being in pain, not throwing up, trying to hold a conversation, then walking, turning your head, washing yourself, eating etc. And slowly but surely returning to driving, going to the shops, getting back to work. And now I've entered this phase of recovery which seems to be characterised by frustration at my own limitations. The other thing that irritates me is that recovery teases you - you have a couple of days where you almost feel 100% again and you start planning... And then bang you're back down to 10% the next day.
On the whole I'm recovering well, but I've got two niggles. Firstly, I'm not as eloquent as I was, I'm not as capable or independant, I don't get stuff as quick, I seem to have forgotten some words / how to spell, I can't do a whole day in the office yet. But it's so subtle that I'm probably the only one who notices it and I know I am hard on myself. I probably used to work longer than I should anyway but I'm in a new team, I have a new manager - they don't know the conscientious Sarah, the one that takes massive pride in her job - they just see this woman struggling for words in meetings, looking a state because a) she's so tired or b) because she cannot fit into ANY of her clothes! And it's even more annoying because I know I'm not right but it probably sounds like rubbish to anyone that didn't know me before. I am feeling like there will come a point where people feel like I am 'milking it' or stringing it out. I promise I am not, I would give anything to be 100% - I am not someone that likes bunking off (anymore - I had my fill of that circa 1998). But at the same time I am still hugely grateful that I've reached this point, there was a time when not feeling sick felt like the biggest and most far fetched goal in the world!
More concerning is that I have been getting headaches. Slightly more than a niggle really. I was going to say 'I've been getting headaches again' but I didn't really get headaches before my op and these headaches are nothing like the agonising head pain I had in August. These headaches are probably down to CSF levels. But because they're not totally crippling I haven't really done anything about them. The benchmark has been set high! When I first had my shunt to treat the collection of CS on my brain, I felt amazing. Then when I started to go back to work I found that every time I extended my hours I'd get these headaches but they'd even out - I assumed the more I was on my feet, the more the CSF needed to adapt. But now I'm finding that I am getting headaches that get worse as the day goes on. Yesterday by 3pm I'd had enough and had to come home from work. Today I've been working from home so it was slightly easier. But I think they are low pressure headaches. Encouragingly I read that a low pressure headache pain is where all the CSF has been drained away so then the brain is being dragged downwards - that was cheerful. Anyway that is the reason that laying down helps. After 2 hours of being flat on my back yesterday I felt near on normal again. Today was a better day all round but standing to make dinner, the pain increased and I started to feel sick. I'm laying down typing this and the pain has subsided.
I wish there was a way to explain everything I've been through and why I struggle some days or not others, so that people who ask could understand. I think people expect other people to go into hospital for whatever it is and then when they come out they're fixed and if they're not, then they're moaners. I guess ultimately as long as those that matter understand then it doesn't really make a difference what anyone else thinks. And actually even when I was healthy and busting my balls at work, I would still mentally thrash myself that I could be working harder and longer. I have always been like that - got to be the best at whatever it is and if I'm not then it's not worth doing (and 99% of the time I'm nowhere near being the best at shuffling paperclips or whatever other ludicrous challenges I set myself). Hence my obssession with running. always got to be a bit better. Secretly I would love to be Paula Radcliffe but even then I doubt I'd be content. Note to self - must work on that.
Anyway it's not really the being in pain that I'm complaining about, it's the terrifying reality that something bad might be going on, like my fluid is at the wrong level again and I could end up in hospital again. But I am not even really complaining about that as I accepted ages ago that I will more than likely end up in hospital sooner or later with this issue. But it's the not knowing. How long do you leave it? I'm fed up of wondering if I'm OK or not. I've started to struggle to sleep again and I'm having non-related nightmares. I need to work on my acceptance around this area of my recovery as well as there isn't an answer or quick fix unfortunately.
I've just hit a wall of tiredness so I think it's time to watch Gypsy Weddings and head to bed. Perhaps tonight I will sleep, perhaps I just needed to be honest about how I'm feeling and give myself a break.
LOL
Sarah x
I cannot even comprehend that it's been 4 and a half months since my operation. It feels like it's been a long recovery to this point and I guess part of the reason is that I had a complication and so that extended the recovery period. I am used to doing everything at break neck speed and that included my expectations for recovery.
Each stage of recovery is challenging for different reasons. To begin with you're focussing on not being in pain, not throwing up, trying to hold a conversation, then walking, turning your head, washing yourself, eating etc. And slowly but surely returning to driving, going to the shops, getting back to work. And now I've entered this phase of recovery which seems to be characterised by frustration at my own limitations. The other thing that irritates me is that recovery teases you - you have a couple of days where you almost feel 100% again and you start planning... And then bang you're back down to 10% the next day.
On the whole I'm recovering well, but I've got two niggles. Firstly, I'm not as eloquent as I was, I'm not as capable or independant, I don't get stuff as quick, I seem to have forgotten some words / how to spell, I can't do a whole day in the office yet. But it's so subtle that I'm probably the only one who notices it and I know I am hard on myself. I probably used to work longer than I should anyway but I'm in a new team, I have a new manager - they don't know the conscientious Sarah, the one that takes massive pride in her job - they just see this woman struggling for words in meetings, looking a state because a) she's so tired or b) because she cannot fit into ANY of her clothes! And it's even more annoying because I know I'm not right but it probably sounds like rubbish to anyone that didn't know me before. I am feeling like there will come a point where people feel like I am 'milking it' or stringing it out. I promise I am not, I would give anything to be 100% - I am not someone that likes bunking off (anymore - I had my fill of that circa 1998). But at the same time I am still hugely grateful that I've reached this point, there was a time when not feeling sick felt like the biggest and most far fetched goal in the world!
More concerning is that I have been getting headaches. Slightly more than a niggle really. I was going to say 'I've been getting headaches again' but I didn't really get headaches before my op and these headaches are nothing like the agonising head pain I had in August. These headaches are probably down to CSF levels. But because they're not totally crippling I haven't really done anything about them. The benchmark has been set high! When I first had my shunt to treat the collection of CS on my brain, I felt amazing. Then when I started to go back to work I found that every time I extended my hours I'd get these headaches but they'd even out - I assumed the more I was on my feet, the more the CSF needed to adapt. But now I'm finding that I am getting headaches that get worse as the day goes on. Yesterday by 3pm I'd had enough and had to come home from work. Today I've been working from home so it was slightly easier. But I think they are low pressure headaches. Encouragingly I read that a low pressure headache pain is where all the CSF has been drained away so then the brain is being dragged downwards - that was cheerful. Anyway that is the reason that laying down helps. After 2 hours of being flat on my back yesterday I felt near on normal again. Today was a better day all round but standing to make dinner, the pain increased and I started to feel sick. I'm laying down typing this and the pain has subsided.
I wish there was a way to explain everything I've been through and why I struggle some days or not others, so that people who ask could understand. I think people expect other people to go into hospital for whatever it is and then when they come out they're fixed and if they're not, then they're moaners. I guess ultimately as long as those that matter understand then it doesn't really make a difference what anyone else thinks. And actually even when I was healthy and busting my balls at work, I would still mentally thrash myself that I could be working harder and longer. I have always been like that - got to be the best at whatever it is and if I'm not then it's not worth doing (and 99% of the time I'm nowhere near being the best at shuffling paperclips or whatever other ludicrous challenges I set myself). Hence my obssession with running. always got to be a bit better. Secretly I would love to be Paula Radcliffe but even then I doubt I'd be content. Note to self - must work on that.
Anyway it's not really the being in pain that I'm complaining about, it's the terrifying reality that something bad might be going on, like my fluid is at the wrong level again and I could end up in hospital again. But I am not even really complaining about that as I accepted ages ago that I will more than likely end up in hospital sooner or later with this issue. But it's the not knowing. How long do you leave it? I'm fed up of wondering if I'm OK or not. I've started to struggle to sleep again and I'm having non-related nightmares. I need to work on my acceptance around this area of my recovery as well as there isn't an answer or quick fix unfortunately.
I've just hit a wall of tiredness so I think it's time to watch Gypsy Weddings and head to bed. Perhaps tonight I will sleep, perhaps I just needed to be honest about how I'm feeling and give myself a break.
LOL
Sarah x
Wednesday, 18 January 2012
Normal is Good
Good evening all,
I've just realised that I haven't even blogged since I had my shunt surgery! That is a real shame as I have been feeling nothing short of 'euphoric' (as reads the 'side effects' section on Wikipedia for Dexamethosone) and it would've been nice to have captured some of those feelings. Although I am now quite glad I haven't, as I would've been forced to see how fake those feelings were and how much of a nutter I've been for the past week! Luckily common sense has told me that the feelings were probably not all my own, so I've kept a lot to myself. But to give you an idea - mentally, I've run the NYC Marathon, thus qualifying for the Boston Marathon, I've single-handedly packed up, moved and re-decorated our new house and driven the Audi more than my OH finally. In reality, I have just about ventured to the ladies. And haven't managed to write 3 blog entries which is what my head's been telling me. Apologies.
I have however read 2 very inspiring books this week though, that I would highly recommend to everyone - Lance Armstrong 'It's not about the bike' - brought me to tears and Matt Long 'The Long Run' - both incredible human beings who have fought battles tougher than anyone should ever have to injure. Although I'm a bit behind the times with these titles, so I'm sure people are very familiar with them already. The Lance Armstrong book in particular has also cemented my total respect for Nike - the way such a huge, global company stood by one young man (and continues to) is incredible.
But back to my little old story about the LP Shunt and Steroids... They started me on the steroids when I went back into hospital the last time around - unbeknownst to me and boy did they make a difference and fast. Testamount to that fact is that I had no idea what they were and a matter of hours later I felt better. They give steroids in this instance to reduce the swelling and inflammation (for me at the back of my head), which makes operating more simplified and the chance of infection reduced and there was me thinking they were just doing me a favour after all I'd been through - "She's been through enough, that one!"
I had been warned by a fellow Chiarian (hey we have a name!) that when she was given these steroids for meningitis which she experienced 6 weeks post decompression surgery, that she was up the next morning making everyone in the ward a cup of tea and toast! I thought she was wildly exaggerating, but honestly, they very quickly make you feel amazing - not something that can be sustained obviously but great while it lasts.
So when I went in for my surgery after 5 days of being on the steroids, I felt pretty good. But let's not be under any false impression, without the steroids the swelling would've continued and brain damage would have ensued, I don't want anyone getting the wrong impression or anything! I only say this as I was heard trying to bargain with my surgeon "but the swelling has gone down a bit, so maybe we could just leave it for a few weeks?" For all of you that thought I was brave, a classic example of me trying to get out of it!
Coming out of the op, I have to say, I felt immediately better - I've never come out of an op like that before (this is my 5th, not that I am boasting or anything). I know some of this was a false sense of wellbeing because of the meds, but the release of pressure I felt was incredible. I recovered really well in the hospital for the next week, continuing on the steroids, I was a lot more mobile than I imagined I would be.
The shunt surgery felt easier than the first surgery for a few reasons I think. When I went in for the decompression surgery, I didn't feel unwell really (apart from the A&E admissions) so it was hard to get my head around letting someone open up my brain and operate when I didn't feel I had any symptoms. Obviously the Syringomyelia is the serious symptom (more on that later), it's just that I hadn't been aware of it physically. I only had the MRI as evidence and that's quite difficult to rationalise. When I went in for the shunt surgery, I'd been feeling really unwell for weeks so logically it made more sense. And the decompression surgery is a bigger surgery and naturally more scary of course. So I felt incredibly grateful that actually the week I was in hospital I wouldn't say I was in pain, I know now that's because it was managed for me, but like I say I am grateful for that.
Those few days in hospital, reading inspirational books and being 'euphoric' did have a profound effect on me though I have to say. And seriously it wasn't all down to the drugs. The gratitude I have has been overwhelming at times. I have had such fantastic support both medically and personally, I couldn't have asked for more. I'm starting to see copies of the costs of my treatment and it blows my mind. I appreciate now that we have been through a lot (and I count my family in this of course, watching all these events has possibly been more traumatic than going through it first hand) and I recognise that for what it is. The whole thing has changed me and my perspective on life - how could it not really. I hope the feelings of gratitude and pure happiness at being alive never go away. I never want to take being able to go for a run for granted again. God, being able to get out of bed in the morning is a gift. I'm finding it really hard to articulate this part of the story because there aren't the words, it's a feeling and an experience, but I hope to live my life in a slightly different way as a result.
But normality is returning in one sense or another, slowly but surely. I came home from hospital on Friday and the staples came out on Monday. I'm now reducing the steroids as instructed and just as fast as they made me feel good, they've made me feel bad. Well, I won't say bad, I should say more normal. I feel like I've had an operation now. I had an uneasy night last night, unable to get fully comfortable and I am stiff when I move. But I'm not complaining. Sore and stiff is normal, I've just had surgery. Normal is good. Thank GOD for normal.
When asked what's been the worst part about the whole experience, it's definitely the pain I had in August, when I was first admitted to hospital. That was sheer agony, more pain than I ever could have imagined in my life. And terrifying as well because you have no idea what's going on (and neither did anyone else at that time). So much so that I actually couldn't imagine anything more painful - that's an incredibly hard concept to explain or imagine yourself and I don't think you can unless you've been through something agonising. Anyway it doesn't really matter actually because everyone feels pain differently and copes with it differently and it's not a competition. I am glad to have been through that amount of pain because I have a better understanding of how I cope with severe pain now. It makes me less afraid of life. We are pretty tough creatures, human beings and I am pleased to know what I'm made of!
So it's no wonder really that today and yesterday I've been bored. Yay for bored! I've been in my pjs because I'm not allowed to shower now the staples have come out, there's nothing on telly, I've read all my books, I'm bored of Gossip Girl (I know, how can this be!) and now the excitement of food is even wearing thin...
Actually, I need to pause for one second to talk about this... can I just say I have been eating the most amount of food known to man! Apparently that's the steroids too. Thank goodness I had lost so much weight from weeks of sickness otherwise I'd be the size of a house by now. I have literally been a total glutton. It's been fun but it can't go on! While I was in hospital (the private one) I was eating: toast, poached eggs, grapefruit, cereal, coffee and juice for breakfast, followed by a 3 course lunch and 3 course dinner, plus an afternoon snack of Ryvita and cheese, bags of crisps, fruit etc. I was like a woman possessed when my OH came to visit "can you get me some food?!" every time. Texts throughout the day with more food demands. I was having proper cravings for really specific things. I suppose a bit like being pregnant, I'd have probably murdered for Tyrells Sweet Chilli crisps at one point. It is passing but it's not gone yet - for lunch today I ate: oven chips topped with about a pound of cheese and 2 packets of Uncle Ben's Vegetable Rice. OMG what is WRONG with me.
Paella for dinner, cooked by the hubbie! More rice, more carbs and there will definitely have to be a dessert as well...
So what's next? I am going to gradually heal from the shunt surgery and give the system a chance to regulate the new pressure over the next couple of weeks (repeat after me Sarah, I must take it easy!). Then I'm going to start my phased return to work - the thought of being well enough to work again is v exciting; I will never moan about going back to work in January after Christmas again! Then in about 5 weeks time I will see my neurosurgeon for my post op check up - he will check the progress of the Syringomyelia, which hopefully will have started to shrink and then we can really start to move on. Wow that's a dangerous paragraph planning it all out like that, but you know what - whatever happens, it's going to be OK. It'll be what's meant to be and we'll deal with it as it comes. I just wanted to put some hope and positivity out there!
Oh and more good news - I am reducing my over-active thyroid meds! Hey life is pretty good.
Lots of love,
Sarah x
P.S. Any suggestions on boredom busters, please let me know! Bare in mind I've been off work for 10 weeks now!
I've just realised that I haven't even blogged since I had my shunt surgery! That is a real shame as I have been feeling nothing short of 'euphoric' (as reads the 'side effects' section on Wikipedia for Dexamethosone) and it would've been nice to have captured some of those feelings. Although I am now quite glad I haven't, as I would've been forced to see how fake those feelings were and how much of a nutter I've been for the past week! Luckily common sense has told me that the feelings were probably not all my own, so I've kept a lot to myself. But to give you an idea - mentally, I've run the NYC Marathon, thus qualifying for the Boston Marathon, I've single-handedly packed up, moved and re-decorated our new house and driven the Audi more than my OH finally. In reality, I have just about ventured to the ladies. And haven't managed to write 3 blog entries which is what my head's been telling me. Apologies.
I have however read 2 very inspiring books this week though, that I would highly recommend to everyone - Lance Armstrong 'It's not about the bike' - brought me to tears and Matt Long 'The Long Run' - both incredible human beings who have fought battles tougher than anyone should ever have to injure. Although I'm a bit behind the times with these titles, so I'm sure people are very familiar with them already. The Lance Armstrong book in particular has also cemented my total respect for Nike - the way such a huge, global company stood by one young man (and continues to) is incredible.
But back to my little old story about the LP Shunt and Steroids... They started me on the steroids when I went back into hospital the last time around - unbeknownst to me and boy did they make a difference and fast. Testamount to that fact is that I had no idea what they were and a matter of hours later I felt better. They give steroids in this instance to reduce the swelling and inflammation (for me at the back of my head), which makes operating more simplified and the chance of infection reduced and there was me thinking they were just doing me a favour after all I'd been through - "She's been through enough, that one!"
I had been warned by a fellow Chiarian (hey we have a name!) that when she was given these steroids for meningitis which she experienced 6 weeks post decompression surgery, that she was up the next morning making everyone in the ward a cup of tea and toast! I thought she was wildly exaggerating, but honestly, they very quickly make you feel amazing - not something that can be sustained obviously but great while it lasts.
So when I went in for my surgery after 5 days of being on the steroids, I felt pretty good. But let's not be under any false impression, without the steroids the swelling would've continued and brain damage would have ensued, I don't want anyone getting the wrong impression or anything! I only say this as I was heard trying to bargain with my surgeon "but the swelling has gone down a bit, so maybe we could just leave it for a few weeks?" For all of you that thought I was brave, a classic example of me trying to get out of it!
Coming out of the op, I have to say, I felt immediately better - I've never come out of an op like that before (this is my 5th, not that I am boasting or anything). I know some of this was a false sense of wellbeing because of the meds, but the release of pressure I felt was incredible. I recovered really well in the hospital for the next week, continuing on the steroids, I was a lot more mobile than I imagined I would be.
The shunt surgery felt easier than the first surgery for a few reasons I think. When I went in for the decompression surgery, I didn't feel unwell really (apart from the A&E admissions) so it was hard to get my head around letting someone open up my brain and operate when I didn't feel I had any symptoms. Obviously the Syringomyelia is the serious symptom (more on that later), it's just that I hadn't been aware of it physically. I only had the MRI as evidence and that's quite difficult to rationalise. When I went in for the shunt surgery, I'd been feeling really unwell for weeks so logically it made more sense. And the decompression surgery is a bigger surgery and naturally more scary of course. So I felt incredibly grateful that actually the week I was in hospital I wouldn't say I was in pain, I know now that's because it was managed for me, but like I say I am grateful for that.
Those few days in hospital, reading inspirational books and being 'euphoric' did have a profound effect on me though I have to say. And seriously it wasn't all down to the drugs. The gratitude I have has been overwhelming at times. I have had such fantastic support both medically and personally, I couldn't have asked for more. I'm starting to see copies of the costs of my treatment and it blows my mind. I appreciate now that we have been through a lot (and I count my family in this of course, watching all these events has possibly been more traumatic than going through it first hand) and I recognise that for what it is. The whole thing has changed me and my perspective on life - how could it not really. I hope the feelings of gratitude and pure happiness at being alive never go away. I never want to take being able to go for a run for granted again. God, being able to get out of bed in the morning is a gift. I'm finding it really hard to articulate this part of the story because there aren't the words, it's a feeling and an experience, but I hope to live my life in a slightly different way as a result.
But normality is returning in one sense or another, slowly but surely. I came home from hospital on Friday and the staples came out on Monday. I'm now reducing the steroids as instructed and just as fast as they made me feel good, they've made me feel bad. Well, I won't say bad, I should say more normal. I feel like I've had an operation now. I had an uneasy night last night, unable to get fully comfortable and I am stiff when I move. But I'm not complaining. Sore and stiff is normal, I've just had surgery. Normal is good. Thank GOD for normal.
When asked what's been the worst part about the whole experience, it's definitely the pain I had in August, when I was first admitted to hospital. That was sheer agony, more pain than I ever could have imagined in my life. And terrifying as well because you have no idea what's going on (and neither did anyone else at that time). So much so that I actually couldn't imagine anything more painful - that's an incredibly hard concept to explain or imagine yourself and I don't think you can unless you've been through something agonising. Anyway it doesn't really matter actually because everyone feels pain differently and copes with it differently and it's not a competition. I am glad to have been through that amount of pain because I have a better understanding of how I cope with severe pain now. It makes me less afraid of life. We are pretty tough creatures, human beings and I am pleased to know what I'm made of!
So it's no wonder really that today and yesterday I've been bored. Yay for bored! I've been in my pjs because I'm not allowed to shower now the staples have come out, there's nothing on telly, I've read all my books, I'm bored of Gossip Girl (I know, how can this be!) and now the excitement of food is even wearing thin...
Actually, I need to pause for one second to talk about this... can I just say I have been eating the most amount of food known to man! Apparently that's the steroids too. Thank goodness I had lost so much weight from weeks of sickness otherwise I'd be the size of a house by now. I have literally been a total glutton. It's been fun but it can't go on! While I was in hospital (the private one) I was eating: toast, poached eggs, grapefruit, cereal, coffee and juice for breakfast, followed by a 3 course lunch and 3 course dinner, plus an afternoon snack of Ryvita and cheese, bags of crisps, fruit etc. I was like a woman possessed when my OH came to visit "can you get me some food?!" every time. Texts throughout the day with more food demands. I was having proper cravings for really specific things. I suppose a bit like being pregnant, I'd have probably murdered for Tyrells Sweet Chilli crisps at one point. It is passing but it's not gone yet - for lunch today I ate: oven chips topped with about a pound of cheese and 2 packets of Uncle Ben's Vegetable Rice. OMG what is WRONG with me.
Paella for dinner, cooked by the hubbie! More rice, more carbs and there will definitely have to be a dessert as well...
So what's next? I am going to gradually heal from the shunt surgery and give the system a chance to regulate the new pressure over the next couple of weeks (repeat after me Sarah, I must take it easy!). Then I'm going to start my phased return to work - the thought of being well enough to work again is v exciting; I will never moan about going back to work in January after Christmas again! Then in about 5 weeks time I will see my neurosurgeon for my post op check up - he will check the progress of the Syringomyelia, which hopefully will have started to shrink and then we can really start to move on. Wow that's a dangerous paragraph planning it all out like that, but you know what - whatever happens, it's going to be OK. It'll be what's meant to be and we'll deal with it as it comes. I just wanted to put some hope and positivity out there!
Oh and more good news - I am reducing my over-active thyroid meds! Hey life is pretty good.
Lots of love,
Sarah x
P.S. Any suggestions on boredom busters, please let me know! Bare in mind I've been off work for 10 weeks now!
Sunday, 8 January 2012
And So 2012 Begins...
I actually wrote this at the start of the weekend but didn't have chance to publish. For some reason, on the morning of the op, with 10 mins to spare before we have to leave the house, I feel the need to get this out there. As I already told you, I'm a shocker for 'lists' and this is one of the only remaining things on my list.
So, Happy New Year...
I hope you all had good ones. This year, we sat in and watched Jules Holland. It was calm. Well, for a bit anyway. The only New Year's Resolution I made this year was: No More Dramas. Sadly, that has already been broken, but through no fault of my own (as kindly pointed out by a close friend), so I guess that doesn't set me up for bad karma for the rest of this year, as if I needed that. Let me fill you in.
As you will know from my previous entry, the last time I was in hospital (10-16th Dec), I was diagnosed with 'severe migraines' which as I mentioned I was skeptical of at the time. I should qualify this really. It's just that you often hear people talking about the fact that they get conditions like migraine or tonsillitis or IBS and it turns out to be a bad headache, a sore throat or a regular tummy upset. I'm not saying that about everyone and I know there are plenty of people suffering chronic conditions everyday of their lives, but given the fact that when I get one of these migraines I am paralysed down one side, cannot speak and am in agony that even morphine struggles to take off, I was not very accepting of the diagnosis - simply because of my understanding of what a 'migraine' is. I couldn't see how other migraines I'd witnessed were the same as mine, or how I would get anyone to take my diagnosis seriously that I needed time off work, or that I was hospitalised.
In addition, it just seems odd that I've never suffered 'migraines / severe headaches' before this year and I find it hard to believe all the head pain isn't related to this brain condition. That said, I was diagnosed by a Consultant Neurologist from Queen's Square, so if anyone should know it should be him, so I had been forced to start accepting it.
About 3pm on New Year's Day, I was going up the stairs to get changed to go for a walk with my OH, brother and his gf. When suddenly I got a horrendous pain across my shoulders that went up my neck and head into the are around my wound from the surgery. Over the space of a few hours it crept over the top of my head and into my face as well, but not as severely. The pain rendered me incapacitated for about half an hour and I was in bed in tears. The pain finally subsided enough to go downstairs but not to go out for the walk. Then when I tried to eat dinner, it sounds bizarre, but I couldn't get my mouth open wide enough to eat, so my table manners left a lot to be desired! I also couldn't open my mouth wide enough to yawn and this was causing a lot of pain!
Note: This pain was totally different to my migraine pain / experience. The head pain was in a different place, the pain felt different and there was no tingling/paralysis or inability to speak. So it is possible that the migraines are a separate thing, granted.
Between being in hospital with the severe migraines and the NYD attack, I'd also had some strange goings on and a general feeling that actually I had stopped getting better and actually started to get worse. I had been planning to go back to a phased return to work on 3rd Jan and it just kept feeling more and more unrealistic. Some of these symptoms included:
- Keep forgetting everyday words and finding it increasingly hard to converse with people
- Walking around the house and veering off to the side unexpectedly
- General balance and co-ordination problems
- Cramp like pain in between my shoulder blades
- Continued/increased nausea and vomitting
- Dizziness and pain when moving position
- Sudden head pain when sitting down / getting up / walking / bending
- Unable to open my mouth wide enough to fully yawn due to pain / stiffness
So come 1am on New Year's Day when I was still awake and in agony, I knew it was time to go back to hospital. I just felt like something was wrong. My OH called The Wellington where I had my op and they advised us to go to A&E because they had no Neuro-Dr at the hospital overnight. The last few times we'd always been to the local A&E and although the staff were very caring, there was no designated Neuro Ward/Unit and the knowledge of my condition/s had been very limited and in the end I'd only be transferred back to The Wellington anyway. So this time we went to the Royal Free, which although is still NHS, it has a massive Neuro Ward and my actual surgeon works there as well, when he's not working privately. We were sent straight through Triage - although we then did have to wait 5 hours to go up to the ward, but it was the early hours of 2nd Jan and NYD had been one of their most violent on record apparently. Which you could well believe given some of the people in A&E on 2nd. Plus by then the pain had subsided quite a lot and it was obvious that I wasn't urgent, urgent.
I could quite literally blog on here for a month about my 2 nights in a London NHS hospital, not least about the 'Gruel and Mash' I was given for dinner one night (I was actually thankful that I was being so sick I couldn't eat) or the view of the woman opposite going for a... 'Number 2' with the toilet door open, or the sheer emotional disturbance of witnessing another patient going through 3 agonising Lumbar Punctures (due to an issue with an op that I'm about to have) - however the main point to highlight is that the nursing staff, Drs and Surgeons were incredible - so caring and knowledgeable and easily on a par with their Private counterparts. The only things I would criticise is that they are under-staffed, under-paid and over-stretched, resulting in them not being able to do the best job.
To cut an exceedingly long story short, my Neurosurgeon came to see me on 3rd Jan on his return from the Christmas break and diagnosed a Pseudomeningocele (swelling of fluid collecting at the wound site), which is causing pressure on the head/brain and some of the strange symptoms I've been getting. The last time I'd seen him at The Wellington (when I was diagnosed with the migraines), he had said something about the back of the head being quite 'full' and that he wanted to see me in a month about that. I hadn't even had a chance to make that appointment and hadn't paid much attention to that given everything else (being tested for Epilepsy, Strokes, Tumours etc). But it became clear that one of the things the surgeon checks at your 6 weeks post surgery appt is the swelling to the wound (fairly obvious when you think about it) but I'd never got to that appt because of everything else going on. Anyway he wasn't happy about it and so I transferred back to The Wellington for more monitoring and tests. He warned me that it was highly likely that I would need another operation, known as a 'Shunt'. In the meantime I was put on steroids and more painkillers.
To recap for a second:
In Aug I was diagnosed with suspected migraines and 'incidental' Chiari Malformation
Then in Sept I was diagnosed with Syringomyelia ("but you have no symptoms, which shouldn't mean you need surgery") and Over-Active Thyroid (given meds)
In Oct I saw the Neurosurgeon who told me I did need surgery for the CM and Syringomyelia
In Nov I had surgery for the Chiari, which in turn should treat the Syringomyelia
In Dec I was diagnosed with severe migraines
Then in Jan I was diagnosed with a Pseudomeningocele
I am due a review of my Thyroid meds in Mar
In Jan I will have my shunt op (see below)
Don't worry if you're not following, they're not brain surgeons for nothing, hey!
Basically CM is where the brain sits too low in the skull and in my case blocks the normal flow of spinal fluid. This results in a cyst in the spine (Syringomyelia) or sometimes fluid on the brain (Hydrocephalus). They operate on CM when there is a cyst present or daily symptoms are very severe. If left a cyst will more than likely paralyse the patient, even if they don't get any symptoms at that point in time (like me), usually by the time they get symptoms it's too late to operate, as damage cannot be reversed. So that's what they did, operate on me in Nov. Unfortunately the body hasn't adapted to the operation and still isn't processing the spinal fluid properly, so now it's collecting at the back of my head (and maybe not in the cyst), but of course this cannot be left either as it could result in Hydrocephalus, brain damage or death. So now they have to do a Lumbar-Peritoneal Shunt.
The shunt is a tube that they put into the bottom of my spine to drain away the excess fluid into the peritoneum (abdomen), it will then be reabsorbed by the body and expelled. My NS is doing this on Monday. The op takes about 1.5hrs and I will have 3 scars - 1 down my spine, a 'stab' wound in my side and a scar across my tummy (I think a few of inches). Shunts are permanent, but only last about 10-15yrs, so I will have to have it replaced in time. They can over or under drain, get infected, or slip, so it's not uncommon that they have to be adjusted etc, so it's possible that this is not the last surgery I will need. But that's OK. I'm OK with this, it could be worse after all.
The bottom line is, my body doesn't deal with the spinal fluid correctly. It never has done and it never will, without help, unfortunately. However, the fortunate part of it is that I have an amazing surgeon, I live in a country where although this surgery is quite new in medical terms, it is a well recognised technique and I have amazing healthcare. My family and friends have been nothing short of amazing, with so much thought and support, I have been overwhelmed by the generosity - both in terms of time, messages, gifts and hugs!
I am also incredibly grateful that I have had this experience to a certain extent, because it's made me see things very differently. I have a new perspective on the world that's for sure and things that used to be really important to me, I now know are totally trivial. The most important things to me are the people I love and that are close to me and being a decent human being. That's it really.
So I've been let home for the weekend, before the op, which is awesome. Although this morning started with me having a weird fainting/shaking attack as I got out of bed and me nearly falling down the stairs. My OH managed to catch me before that happened and made me amazing tea and toast! That's one of the most frightening things though, is all these bizarre things happening to your body that you have no control over. To go from being totally in control to totally not, is very strange. But actually, I'm beginning to think maybe it's the best thing for me. I had got quite OCD / timetable-led about life and putting pressure and stress on myself which was totally self inflicted. I don't think it's a bad thing that I realise that perhaps it's not all down to me and I need to let go a bit more!
Bit of a rush to get this update out, but I wanted to share every step of the journey as promised, there would no point if not. I just read this back and I think this doesn't even cover the half of the drama, but those that know me can imagine I'm sure! Just imagine sick, sick, sick and more sick, fainting attacks, agonising pain, tears and general terror. That said, I think I have coped reasonably well, this is my/our life at the moment and has been for 5-6 months. Maybe one day I will go back to work...
Did I mention that we are 2.5 weeks away from moving house / first house purchase? :-)
That's all for now folks, see you post op!
S x
So, Happy New Year...
I hope you all had good ones. This year, we sat in and watched Jules Holland. It was calm. Well, for a bit anyway. The only New Year's Resolution I made this year was: No More Dramas. Sadly, that has already been broken, but through no fault of my own (as kindly pointed out by a close friend), so I guess that doesn't set me up for bad karma for the rest of this year, as if I needed that. Let me fill you in.
As you will know from my previous entry, the last time I was in hospital (10-16th Dec), I was diagnosed with 'severe migraines' which as I mentioned I was skeptical of at the time. I should qualify this really. It's just that you often hear people talking about the fact that they get conditions like migraine or tonsillitis or IBS and it turns out to be a bad headache, a sore throat or a regular tummy upset. I'm not saying that about everyone and I know there are plenty of people suffering chronic conditions everyday of their lives, but given the fact that when I get one of these migraines I am paralysed down one side, cannot speak and am in agony that even morphine struggles to take off, I was not very accepting of the diagnosis - simply because of my understanding of what a 'migraine' is. I couldn't see how other migraines I'd witnessed were the same as mine, or how I would get anyone to take my diagnosis seriously that I needed time off work, or that I was hospitalised.
In addition, it just seems odd that I've never suffered 'migraines / severe headaches' before this year and I find it hard to believe all the head pain isn't related to this brain condition. That said, I was diagnosed by a Consultant Neurologist from Queen's Square, so if anyone should know it should be him, so I had been forced to start accepting it.
About 3pm on New Year's Day, I was going up the stairs to get changed to go for a walk with my OH, brother and his gf. When suddenly I got a horrendous pain across my shoulders that went up my neck and head into the are around my wound from the surgery. Over the space of a few hours it crept over the top of my head and into my face as well, but not as severely. The pain rendered me incapacitated for about half an hour and I was in bed in tears. The pain finally subsided enough to go downstairs but not to go out for the walk. Then when I tried to eat dinner, it sounds bizarre, but I couldn't get my mouth open wide enough to eat, so my table manners left a lot to be desired! I also couldn't open my mouth wide enough to yawn and this was causing a lot of pain!
Note: This pain was totally different to my migraine pain / experience. The head pain was in a different place, the pain felt different and there was no tingling/paralysis or inability to speak. So it is possible that the migraines are a separate thing, granted.
Between being in hospital with the severe migraines and the NYD attack, I'd also had some strange goings on and a general feeling that actually I had stopped getting better and actually started to get worse. I had been planning to go back to a phased return to work on 3rd Jan and it just kept feeling more and more unrealistic. Some of these symptoms included:
- Keep forgetting everyday words and finding it increasingly hard to converse with people
- Walking around the house and veering off to the side unexpectedly
- General balance and co-ordination problems
- Cramp like pain in between my shoulder blades
- Continued/increased nausea and vomitting
- Dizziness and pain when moving position
- Sudden head pain when sitting down / getting up / walking / bending
- Unable to open my mouth wide enough to fully yawn due to pain / stiffness
So come 1am on New Year's Day when I was still awake and in agony, I knew it was time to go back to hospital. I just felt like something was wrong. My OH called The Wellington where I had my op and they advised us to go to A&E because they had no Neuro-Dr at the hospital overnight. The last few times we'd always been to the local A&E and although the staff were very caring, there was no designated Neuro Ward/Unit and the knowledge of my condition/s had been very limited and in the end I'd only be transferred back to The Wellington anyway. So this time we went to the Royal Free, which although is still NHS, it has a massive Neuro Ward and my actual surgeon works there as well, when he's not working privately. We were sent straight through Triage - although we then did have to wait 5 hours to go up to the ward, but it was the early hours of 2nd Jan and NYD had been one of their most violent on record apparently. Which you could well believe given some of the people in A&E on 2nd. Plus by then the pain had subsided quite a lot and it was obvious that I wasn't urgent, urgent.
I could quite literally blog on here for a month about my 2 nights in a London NHS hospital, not least about the 'Gruel and Mash' I was given for dinner one night (I was actually thankful that I was being so sick I couldn't eat) or the view of the woman opposite going for a... 'Number 2' with the toilet door open, or the sheer emotional disturbance of witnessing another patient going through 3 agonising Lumbar Punctures (due to an issue with an op that I'm about to have) - however the main point to highlight is that the nursing staff, Drs and Surgeons were incredible - so caring and knowledgeable and easily on a par with their Private counterparts. The only things I would criticise is that they are under-staffed, under-paid and over-stretched, resulting in them not being able to do the best job.
To cut an exceedingly long story short, my Neurosurgeon came to see me on 3rd Jan on his return from the Christmas break and diagnosed a Pseudomeningocele (swelling of fluid collecting at the wound site), which is causing pressure on the head/brain and some of the strange symptoms I've been getting. The last time I'd seen him at The Wellington (when I was diagnosed with the migraines), he had said something about the back of the head being quite 'full' and that he wanted to see me in a month about that. I hadn't even had a chance to make that appointment and hadn't paid much attention to that given everything else (being tested for Epilepsy, Strokes, Tumours etc). But it became clear that one of the things the surgeon checks at your 6 weeks post surgery appt is the swelling to the wound (fairly obvious when you think about it) but I'd never got to that appt because of everything else going on. Anyway he wasn't happy about it and so I transferred back to The Wellington for more monitoring and tests. He warned me that it was highly likely that I would need another operation, known as a 'Shunt'. In the meantime I was put on steroids and more painkillers.
To recap for a second:
In Aug I was diagnosed with suspected migraines and 'incidental' Chiari Malformation
Then in Sept I was diagnosed with Syringomyelia ("but you have no symptoms, which shouldn't mean you need surgery") and Over-Active Thyroid (given meds)
In Oct I saw the Neurosurgeon who told me I did need surgery for the CM and Syringomyelia
In Nov I had surgery for the Chiari, which in turn should treat the Syringomyelia
In Dec I was diagnosed with severe migraines
Then in Jan I was diagnosed with a Pseudomeningocele
I am due a review of my Thyroid meds in Mar
In Jan I will have my shunt op (see below)
Don't worry if you're not following, they're not brain surgeons for nothing, hey!
Basically CM is where the brain sits too low in the skull and in my case blocks the normal flow of spinal fluid. This results in a cyst in the spine (Syringomyelia) or sometimes fluid on the brain (Hydrocephalus). They operate on CM when there is a cyst present or daily symptoms are very severe. If left a cyst will more than likely paralyse the patient, even if they don't get any symptoms at that point in time (like me), usually by the time they get symptoms it's too late to operate, as damage cannot be reversed. So that's what they did, operate on me in Nov. Unfortunately the body hasn't adapted to the operation and still isn't processing the spinal fluid properly, so now it's collecting at the back of my head (and maybe not in the cyst), but of course this cannot be left either as it could result in Hydrocephalus, brain damage or death. So now they have to do a Lumbar-Peritoneal Shunt.
The shunt is a tube that they put into the bottom of my spine to drain away the excess fluid into the peritoneum (abdomen), it will then be reabsorbed by the body and expelled. My NS is doing this on Monday. The op takes about 1.5hrs and I will have 3 scars - 1 down my spine, a 'stab' wound in my side and a scar across my tummy (I think a few of inches). Shunts are permanent, but only last about 10-15yrs, so I will have to have it replaced in time. They can over or under drain, get infected, or slip, so it's not uncommon that they have to be adjusted etc, so it's possible that this is not the last surgery I will need. But that's OK. I'm OK with this, it could be worse after all.
The bottom line is, my body doesn't deal with the spinal fluid correctly. It never has done and it never will, without help, unfortunately. However, the fortunate part of it is that I have an amazing surgeon, I live in a country where although this surgery is quite new in medical terms, it is a well recognised technique and I have amazing healthcare. My family and friends have been nothing short of amazing, with so much thought and support, I have been overwhelmed by the generosity - both in terms of time, messages, gifts and hugs!
I am also incredibly grateful that I have had this experience to a certain extent, because it's made me see things very differently. I have a new perspective on the world that's for sure and things that used to be really important to me, I now know are totally trivial. The most important things to me are the people I love and that are close to me and being a decent human being. That's it really.
So I've been let home for the weekend, before the op, which is awesome. Although this morning started with me having a weird fainting/shaking attack as I got out of bed and me nearly falling down the stairs. My OH managed to catch me before that happened and made me amazing tea and toast! That's one of the most frightening things though, is all these bizarre things happening to your body that you have no control over. To go from being totally in control to totally not, is very strange. But actually, I'm beginning to think maybe it's the best thing for me. I had got quite OCD / timetable-led about life and putting pressure and stress on myself which was totally self inflicted. I don't think it's a bad thing that I realise that perhaps it's not all down to me and I need to let go a bit more!
Bit of a rush to get this update out, but I wanted to share every step of the journey as promised, there would no point if not. I just read this back and I think this doesn't even cover the half of the drama, but those that know me can imagine I'm sure! Just imagine sick, sick, sick and more sick, fainting attacks, agonising pain, tears and general terror. That said, I think I have coped reasonably well, this is my/our life at the moment and has been for 5-6 months. Maybe one day I will go back to work...
Did I mention that we are 2.5 weeks away from moving house / first house purchase? :-)
That's all for now folks, see you post op!
S x
Thursday, 22 December 2011
A Rocky Road
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
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
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!
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