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
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