Thursday, 16 September 2010

There's diagnosis and then there's diag-no-help-whatsoever.

Just a short one (hopefully). Mr A is on annual leave from work until the beginning of next month, so I'm not around very much right now.

First, some amazing news! Mr A and I had discussed getting me a new laptop for a little while now. My old one had been dying for ages, then finally about 6 months ago died completely. Since then I've been using a teeny tiny 10" netbook which has been giving me major back, neck, eye, and finger strain. It also doesn't stream video or play DVD's or music or really do any of the things I relied on my old laptop to do. I also went on a self-imposed clothes-buying-ban earlier this year, in order to teach myself self restraint and hopefully to appreciate my existing (and fucking enormous) wardrobe a bit better. I've been doing really well, have not bought a single item of clothing (not including underwear, which is an essential) since I made the challenge. It's also been a tough year for me. I don't talk about my depression much anymore, but coming out of it has been an ongoing battle, and I don't win every day. But slowly slowly, bit by bit, I'm learning to treat myself well, and I'm learning to love myself and my baby. No. I'm learning that I DO love my baby. And I'm learning that I'm human, that no one expects the things from me that I think they do, that no one WANTS me to work myself into the ground, that no one thinks I deserve to be punished for the rest of my life for not living up to the impossibly high standards I set myself. My self-flagellation knows no bounds, really. But I'm learning to ease up on myself with the help of Mr A. I'm learning that when I inevitably fail because I've set myself yet another Promethean task, that actually, it's ok. I don't need to weep and gnash and beat my back with willow branches. But I'm not quite there with the loving-thy-self thing yet. Which is why when Mr A said he thought we should get me a laptop and because of all the things I mentioned above, then he said I could spend £500 on it (I had originally set the almost impossibly low limit of £350, forced up from £300 by the lack of ANYTHING in my original price range) and then said I could buy the lusciously pretty pink one I'd stroked and cooed at the day before in PC World, I told him 'No, nevermind, I don't want one. I don't deserve it.'

Luckily for me, I have a husband who knows I'm an idiot and every now and again he does things for my good. He came home from being sent out to fetch some vegetables with a laptop under his arm. Not just any laptop, but a beautiful pale pink top-of-my-price-limit laptop with enormous keys and a DVD drive and the ability to stream video's and it's perfect and I love it and I nearly dropped the pan of potatoes I was cooking and then I cried a lot. And then he panicked and threatened to take it back if I didn't stop being so bloody silly. And then I TOLD him to take it back, and he refused. So right now I'm typing on my lovely new laptop and it is lovely and all the keys work and I can use it without my hands cramping up and I love it and I could cry.

Secondly, good news and bad news. The good news? I saw the Rheumatologist and I have an official acknowledgement of hypermobility. The bad news? The appointment didn't quite go as well as I hoped it would. I forgot loads of stuff and as a consequence I don't think I really gave him a great picture of my condition. Like he kept asking about my hands and we'd just been talking about bendiness so I said my hands were fine, completely forgetting that while my hands aren't actually very bendy, that's kind of EXACTLY the problem. They cramp up incredibly fast any time I have to hold them in any position, especially around an object, for example while peeling veggies or writing. I also don't think I did justice to the constant exhaustion or what he referred to as 'clunking' and I refer to as all-my-god-damn-limbs-going-where-they're-not-supposed-to. He asked if I dislocate, and because I don't 'officially' dislocate (although sometimes I really wonder how I'd know. Sometimes my limbs do things that make me feel ill to look at, and it hurts, but 90% of the time I don't have to physically push them back in.) I had to say no, and I felt like once he heard that he kind of stopped listening. I know I'm nowhere close to the worst case of hypermobility he's seen, but I can click both hips in and out of their sockets like a light switch, for gods sake, and walking out of there with a bad 80's A.R.C leaflet and my name on the end of a 6 month long physio waiting list (I won't live in the area in 6 months time, by the way. Awesome stuff, no?) felt like a massive, massive disappointment.

On one hand, I feel validated. There's a bit in the leaflet that says 'You're not a hypochondriac. You're not making this up. Don't believe that.' and it's so helpful to read. To hear. to have a doctor go 'Yes, ok, there's something wrong, let's work on managing it.' is amazing. But at the same time he didn't address any sort of alternative pain management (except to tell me to take ibuprofen with my co-dydramol to help with swelling) and he just seemed to want me out of his office as quickly as possible. I know I should be grateful but I felt let down. I wanted answers. I don't know if I was just being unrealistic but I wanted something more than what I already knew and a joke of a referral for physio.

There's also a tiny part of me that died when he said 'No, this won't go away, it won't ever get better. You just have to manage it now.' I think until then and possibly still even a bit now, in my heart of hearts I hoped there'd be some magical House moment and he'd figure out I had some rare but entirely curable problem and I needed to take 3 spoons of grape juice an hour and then clap twice and I'd be cured and I'd go back to living like a normal human being who isn't already approaching her sell-by-date. But there was no House moment. I'm broken. I'm going to stay broken. From now until I die it's just a matter of keeping me patched up however we can.

In the last of the news I saw the dental surgeon. I have serious dental problem. Recurring infection in my bottom right wisdom tooth has caused bone loss around the tooth, and both the bottom right and bottom left wisdom teeth will need to be removed. I'm awaiting a call for them to schedule the surgery, I'm just praying they can schedule it for a monday. Mr A works Thursday-Sunday and is off work Monday-Wednesday and not having anyone else nearby means that he has to be the ones who looks after me and drives me home and looks after the kiddo. The longer I have to recover the better, but if they schedule it for a Wednesday it will be disastrous. I can barely take care of us both under normal circumstances. The day after surgery it'll be impossible.

Oh life.

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