This blog chronicles my experience of chronic illness. It’s not an extraordinary case. In fact, rather depressingly, I think I share in the general experience of a diagnostic disaster, disbelief and utter lack of support with far too many other people around the world. Unless there is a straight forward blood test that can be carried out by your GP or your symptoms point clearly, in big flashing lights to the specialist you need to see, then the chances are that getting a correct diagnosis and treatment will be a bit like a really long, painful game of snakes and ladders. Even if you correctly diagnose your illness via doctor Google and family history, good luck being taken seriously by your doctors. As soon as you mention that you read something on the internet, you are labelled a hypochondriac forever more. Never mind the fact that you could well be right and the doctors dismiss your belief based nothing more than their arrogance and the fact that they went to med-school and haven’t heard of the weird condition you’re claiming to have. Their ignorance should not be your problem, but it is.
I diverge. I have some truly brilliant friends and family who have been incredibly supportive while my body has been trying to ruin my life. My family and my partner have not once made me feel guilty for the financial support I require – I can’t imagine the additional stress that would be caused by this. It’s the end of my month and the DWP seem to be having trouble retrieving my sick-line from up their arse so of course I’m late getting my ESA – So J had to pay for the supermarket shop. Again. It’s not that any of my family are especially flush, but they are all so generous. It makes the world of difference. I am in a constant cycle of saying sorry and thank you.
But when the realisation hit that I probably need a wheelchair if I’m going to wrestle back any kind of independence, I started worrying about money. My physiotherapist and occupational therapist implied I didn’t qualify for one on the NHS. I looked into it more and it seems I possibly could, but it could take 6 months (and another half a year of muscle wastage) and would involve a whole other chapter of “fighting for my rights”. I have spent a year and a half fighting for every test, every treatment and every drug. I’ve had to fight relentlessly to be listened to. All this fighting has wiped me out on every level. There have been times that I’ve calmly come to the conclusion that I cannot continue to live in a world where I am in constant pain and have to fight tooth and nail for any help.
I didn’t know where I was going to get well over £1000 from to buy a wheelchair, so I decided to look for a second hand one in the hope that the bank of Dad would once again bail me out. It probably wouldn’t be what I ideally needed, but at the least it’d allow me to start building up my confidence and stamina – both of which I’m scraping the barrel for these days – in the hope that I can return to work in the new year. I messaged the independently run local news site, Fubar News. They put up a post asking if anyone had a pre-loved powerchair for sale. A few people got back to me but one was a scooter, one was gone, one was in a style that would likely hurt my fragile joints… But then people started sending me private messages asking if I’d set up a GoFundMe page. Did complete strangers want to help me? Why me? I eventually swallowed my pride and set one up. Holy moly, people are bloody amazing. In two days… 48 hours… People had donated £1500. I was scrambling about, having a breakdown, trying to figure out how to turn donations off! I am utterly stunned that perfect strangers (among 5 or 6 people I know) would do that for me. Whenever I think about it too much, I start to cry. It’s nice to be crying because of overwhelming support, usually it’s just pain and frustration.
I have to wait a week for the money, of which GoFundMe take about 8%… but I’m getting a wheelchair. I am getting a freakin’ wheelchair. I went and spoke to my work who were generally positive about things. There is obviously a lot to figure out with HR regarding adaptations, but as long as they can manage these, it looks like returning to work could well be on the cards. There is always the chance that it won’t be possible for them to reasonably carry out the adaptations or I’ll go back and not manage – but I’m sure as hell going to give it my best shot. If it doesn’t work out, I’d like to visit nursing homes and have a cup of tea with/read to the residents on my better days. This past 18 months has taught me a lot about loneliness and I wouldn’t wish it on anyone.
I posted on the Fubar News page about how a lot of women get married in a second hand dress and are perfectly content with it – but if someone offered them a brand new dress for their new chapter of life, it would be magical. This chair is that brand new dress of my dreams. My priorities at 27 have been somewhat turned on their head from how I imagined it would be, but it’s my life and I just have to work with what I’ve got. I will be eternally grateful to the people who gave their own money so that I can try and cling onto my independence. It also makes me smile to know that they are the same people out on the streets where I live, who do not judge harshly and would help me in a heartbeat if I had some sort of out and about wheelchair disaster.
P.S. To the one ex-colleague who sent me abusive messages about working hard for what I need, I hope you don’t have a silently lurking, incurable chronic illness just waiting to swoop in and ruin your life. Because, with an attitude like that, no one is going to want to help you. And anyway, as my amazing current colleague pointed out – “It’s a fucking wheelchair, not an exotic holiday!”… and that’s why I’m dying to get back to work with these brilliant folks ❤