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 ;-)
Monday, 31 October 2011
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.
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