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
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