Hi everyone! A life update is well overdue so I thought that’s what I’d do on here today. The start of 2020 has been interesting to say the least and I feel like I’ve got a lot to say and a lot of different feelings on different situations so I’m not going to ramble on in an intro for too long.
The start of 2020 felt pretty much the same as 2019. Definitely worse than the start of last year as I’ve deteriorated so much, but just as bad as the end. I set myself a few goals but decided to no longer beat myself up if I can’t upload constantly on here which is what happened last year, if I can’t constantly create makeup looks or get dressed too often. I had some hope though because of my power chair. Honestly, just having it there gives me hope because I know that it’s my freedom. I’ve actually only managed to get out in it once so far this year, which is partly down to my pain being bad but also down to the weather being so shitty all the time. I can’t really expect too much at this time of year! I have been managing to upload a little on here though and have created a fair few looks during January, so I suppose that’s something.
Unfortunately, something happened in the middle of the month- I mean of course it did, this is my life. I got a letter from the DWP. At the end of 2019, I had to fill out yet another 30 page form to see if I’m still eligible for ESA. Surprisingly, no, I haven’t been magically cured over the last year. Shocking, I know! I had to actually fill it in on the computer, which still caused me quite a lot of pain, because I can’t handwrite much at all anymore. Even though I did that, I genuinely didn’t expect this to happen. I’d made it very clear multiple times within the form that I am mostly house and bedbound, I left the house less than 10 times in 2019 and there’s no way I could get to the assessment centre which is an hour and a half round trip from my home by car. But it’s the DWP, so of course they made me go anyway! The doctors wouldn’t give me a letter as evidence without me paying for it which I just couldn’t afford in January. I hadn’t known it was coming, so I hadn’t budgeted for it. I spent the week before that assessment making myself sick with worry. I know that the assessors that medically assess you don’t have any relevant qualifications and will pick apart every single thing about your appearance and behaviour to try and find a reason to stop giving you money.
Anyway, the day of the assessment came and my sister had had to rearrange work around it to be able to take me. I just knew that the journey was going to make me ill but I didn’t expect it to be as bad it was. I literally looked down at a phone to check directions for less than five seconds and I got travel sick and not long after, I started getting back spasms. When we actually arrived at the centre and I had to get out of the car, my legs started spasming really badly and I couldn’t stand on them. I’d decided to use my stick because we haven’t taken apart my chair and put it back together yet and I didn’t want to have to do it for the first time on such a stressful day. I was crying by the time I got to the waiting room which is fantastic! And that’s not where the stress ended, because I had to sit and wait for an hour because they were running so late. I was so visibly unwell by this point because as I’d said before, I wasn’t well enough for this, not that any health professional would actually listen to me.
Thankfully and by some miracle, I managed to get one of the very few decent assessors. I mean really, it’s clear to anyone that I’m not fit to work at the best of times, and this was absolutely one of the worst times. I honestly can’t remember much of what was said within the assessment because I dissociated through the entire thing, but I know that my sister was upset and I think that’s what made me realise that it’s so beyond fucked up that I’ve just been existing in my bed for the last year. It’s not even like I really did anything- I couldn’t read, I couldn’t write so I was just watching TV and at times I couldn’t even concentrate on that. The assessor was actually very taken aback and concerned that this is how I’m living and that I’m so chronically depressed with absolutely no support from any medical professionals. I had no idea that the DWP could even do this, but she wrote to and phoned my GP surgery to give them a kick up the arse and tell them just how unwell I am.
I just want to make it clear here that I still hate the DWP and everything they stand for. Just because I got one decent assessor doesn’t erase all of the evil they’ve done. My people are dying under this system and it is not ok. I appreciate what this one assessor did for me, but that doesn’t mean I’m going to stop fighting against the DWP and for disabled and sick people any time soon.
I was actually shocked that within two hours, the on duty GP at my surgery called me, but I was less shocked that her attitude was rude and dismissive. This is what I’ve come to expect from my surgery at this point: rude at best, neglectful at worst. I didn’t really take much in at the time because I was so poorly, but after a couple of days I started to doubt that she’d actually made the referral to rheumatology that I need. I’ve been to them once before, but they diagnosed me with Fibromyalgia (wrong) and ME (correct). Fibromyalgia would not explain the symptoms that I have and have had for many years like my joints coming out of place and dislocating, local anaesthetic not working for me, wounds taking months to heal and more. So again, I was surprised when it took less than a week for my letter from the rheumatology department to arrive, and even more shocked that it was scheduled this month, which I think would mean that they’d referred me as urgent. Rightly so, really. Unfortunately, I think that I’m seeing the same rheumatologist who was rubbish and diagnosed me with Fibro last time, but my big sister is coming with me for backup this time and I’m going to be doing a shit ton of research on EDS (Ehlers Danlos Syndrome, the condition that I’m incredibly sure I have) as well as Lupus, so we won’t be letting them get away with fobbing me off again. It has to end now. I have no quality of life and I can’t carry on living like this.
I’ve been trying to make sure that I’m doing things that I enjoy as much as I can, even when I’m in pain. If I can create one makeup look a week then that’s an achievement. I also finally decided to bite the bullet and start learning about some things that I’ve wanted to for the last half a year or so- witchery, tarot and astrology. Even though I haven’t managed to do all that much yet, learning something new has made me feel creative again for the first time in a very long time, and I started thinking of ideas for the book that I’ve wanted to write for years now. I don’t want to give away details because I like to keep things to myself with regards to my writing, but the book I have planned is accessible, especially for people like me who struggle to concentrate on large amounts of text in one go because of chronic illness.
I was going to write about my feelings to do with the Labour Party at the moment in this post, but it’s already so long just from talking about those things so I think I’m going to have to save it for another time.
Thank you so much to everyone who has taken the time to read my blog posts so far in 2020, to the people who have supported me in so many different ways and to those who have gone out of their way to help me. I love you all and I hope that this year is better for all of us.