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!