Thursday 20 August 2015

Writing it out of your soul

The following is written so that what comes after can come. I keep waiting for the after to arrive and it isn't, I suspect because this is bottlenecking it. I don't really want to talk about it, this is me being utterly selfish. I'm going to write some hard shit down and I'm going to walk away a little lighter. You might walk away a little heavier. I'm sorry. You have been warned.

You know it's chronic before they tell you it's so. Of course you do. You've lived with it for 5 years or so, the 'no this isn't quite right' turning into 'no this really isn't right' turning into 'lets just try this and see how you do' which then becomes a merry-go-round of something like 8 different specialists in 5 different disciplines until you listen to that friend who's being going 'you sound a lot like me sweetie' and you go to your doctor who you've now got an ace relationship and say the magic words 'my friend has this and it's got me thinking'.

For too many people that conversation goes badly. Doctors don't apparently like their patients comparing notes. I understand why, I understand that if it clops and canters it's a horse and not a zebra or whatever that silly saying is. I understand we've all turned into neurotic Googlers. But as someone who's gone way way way past neurotic Googling into avoiding Google completely because it tells you futures you can't deal with yet, I can honestly tell you I am grateful to my doctor. I almost hero worship her. She didn't refer me to rheumatology as fast as she should have done, no, but she was ensuring I satisfied some diagnostic criteria in doing so. As a result last week I was diagnosed with a chronic condition in 20 minutes. It was almost anti-climatic after 5 years of searching for the why's, the how's, the explanation that would satisfy my engineer brain and allow me to move on.

Except, as much as the NHS might like you to believe that diagnosis is the end of the story, it isn't. If only. Then you get sucked into the cycle. Every person with chronic illness knows it. Hell, I've already been through it twice in the past 18 months, I feel like the worlds expert. First there's relief, then there's anger, then there's sadness, and grief, (and fear, no one ever talks about the fear but it's there) and finally the quiet of acceptance.

Except I'm high functioning autistic and I've already been at least once around that cycle already since last Thursday.

And this is where the NHS starts to fall down. I've been offered no help with getting my head around this quite major thing, none at all. I'll be referred to physios, of course, who'll put me through seven levels of pain I didn't know I was capable of and I shant care a bit because at least it will be seven levels of pain it's okay for me to be in, unlike the last 3 or 4 lots of physio (I've been to physio a lot, it really should have flagged something up) which did more damage than good because I was undiagnosed. Not their fault. But then who's fault?

It will be left to my ASD counsellor no doubt to unpack how I feel about being diagnosed with a lifelong incurable condition which few people seem to know about, little research has been done, and which treatment extends to 'take enough painkillers to not cry in pain every morning/time you move and work as hard as you can to build muscles to keep your joints in place' which is useful and works but ignores comprehensively the other symptoms, which are not imaginary as they constitute minor criteria for a diagnosis. But that's no ones fault, is it, that somehow the things which proved I had this thing are no longer up for discussion when we talk about how we treat this thing.

Then there's the revelations that somehow all the not Googling but talking to friends had missed. 'How's your sleep?' asked the Specialist. I laughed. Out loud. Proper authentic knee jerk LOL'd. I tend to comment the one morning I wake up feeling better than when I went to sleep it happens so rarely. It's been happening so long I'd assumed no one slept well. I'd forgotten I ever did that's for sure. 'How's your neck?' A week later I am forced to admit I may have not been entirely honest in my answer that it was a bit sore, having forgotten entirely that occasionally it fails to hold my head up, and that it was, once, not so solid to the touch it felt like a brick, nor so painful to be touched it made me yelp.

Opiates don't kill all pain. I didn't know that before all this started either. I don't feel migraines any more. I don't cry with pain quite so much in the morning. But the bone and joint pain persists, it seems, through everything the pharmacist can throw at it. Heat is the only thing that takes it away but baths make my heart race and me fall down in a muscle wobbled heap so they're kind of a no no these days. Dry heat it is. If only houses came with saunas as regularly as they came with baths.

So much of this I've only learned recently. So much of it I've learned through trial and error. There are forums I should go and read, charity webpages which contain helpful sources of information and research. I should read them. I need to get over the idea I am not permitted to first. The problem is, when you've been tested for suspected MS and then when it wasn't that suspected Lupus, is that after a while, you almost believe completely that they're never ever going to find out what it is. So even when friends tell you that you even look facially like their friends with this thing, you still don't dare to believe you might have that thing. You join Facebook groups relating to the thing, so much of what's posted resonates with you, but you feel like a complete fraud for even joining the groups because you're not diagnosed.

It takes a while for it to sink in that you're no longer a fraud. Even longer to allow yourself to start reading all the help and support that's aimed at 'people like you' because inherent in the reading of it is the acknowledgment that you are 'people like that'.

I wish there was some kind of post diagnosis website the NHS had to send people to where all this was explained. Where you were reassured your feelings were normal. Where you were told what to expect, how you will feel, how you will want to stop feeling. It's such a simple thing, knowing someone has been on this road before you, way before you, and they are still on the road, they haven't fallen off it, and you wont either. The assurance of not alone. The echoes of someone else's battles. The sound of help at hand should you look like your path is heading towards a cliff.

I suppose then, that at the end of all this explaining and self pity, of this soreness and exasperation is a plea. If you attend any kind of NHS focus group thingy, or whatever, could you suggest it? Because I think the time when I may be able to attend those groups myself as a functioning disabled person may be quite some way off and it'd make me feel better to know some good came out of this stage of the cycle. This stage that doesn't have a name by the looks, though I suspect fear would be as good as label as any.


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