An Update...

 I realise I've been avoiding social media again, especially YouTube, and I thought I would explain why. 

My first reason is that I've just been really ill, and seeing everyone living normal lives, and being part of the yarn community that I can't be a part of, is so hard to deal with. 

Secondly, I know I will waffle about my health if I film anything for YouTube, so I thought rather than bore people there, I'll do a quick update here, and maybe it will motivate me to film a vlog. 

Pet Tax

Basically, since I changed GP, everything has been moving at a much faster pace. I have achieved more in a month with the new GP than I have in 20 years with my old one. So far, I have had a LOT of blood taken, and I am waiting for the results. I have had my medication changed, which was terrifying, and that has been a process of two months - tapering down the dosage of my old meds, switching to the new one, then gradually increasing the dose. It has not been an easy process, I feel absolutely awful and so far, it isn't doing what it is supposed to do (stop my pain receptors from firing, so I feel less pain). I seem to be in more pain, which I didn't think was possible, but I have to give it at least another month.

Blaidd helping me have blood tests

 

My spine seems to be getting worse. I went out in the car for about half an hour each way, and that was back in January. I am still in agony now. Something has set it off massively, and the pain is unbearable. I have spent most of February and March on my side in bed as I cannot sit upright. That's fun! I am getting pins and needles down both legs, numbness, and balance problems.

Tom driving me around in his new car!

I am still having awful reactions to something. It's possibly MCAS, but they aren't sure yet. When I eat food in the evening, I suddenly feel like I have the worst flu ever. I can't move, the pain is unreal, I get itchy red blisters all over my face and in my mouth, and just feel so unwell. It's honestly awful. And my sleeping is all over the place too. I don't seem to be able to sleep at night any more, finally falling asleep at 9am, which is making me all out of sync. 

After my social services assessment, I have been offered a carer for a trial period. They will come in twice a day to help me wash, dress and eat. I will also be referred for social prescribing, which is where someone will come out and give me some company and maybe at some point, even take me out. 

I have had another OT assessment where they were concerned about my wheelchair transferring, so they have ordered grab rails to help, which will be installed soon. They'll be coming back out to look at the kitchen and accessibility in there. 

Post OT Assessment cupcake

I have been offered physiotherapy at home. They came out last week for a first visit, and are going to try and help me with bed exercises to start with. I have very bad muscle wastage in my legs, and my calf muscle has shortened which causes pain. I've been given some stretches, and they're coming back out tomorrow to do a proper session. It does scare me, because of how much pain I'm in, but I have to try and push through or I will just get worse and worse. Even if it helps me with the most simple things, like moving my head, raising my arms and turning over in bed, I will be happy. 

I have been feeling very down since Christmas really. I still find it impossible to accept that I am actually disabled. A big part of that is being constantly bombarded with hate every time I look at social media. My algorithm is showing me what feels like ALL the posts about how lazy, fraudulent, disgusting and awful disabled people are, some calling for our deaths, some calling for us to be forced into physical roles and some calling for us to be marked in some way, like Jewish people were in Nazi Germany. It's soul destroying. I do try and block these accounts so they don't show in my feed, but now I am being shown news outlets from England and Scotland, discussing the same issues. 

Seeing media daily, that thinks I am not worthy of an acceptable standard of living, starts to make you believe that maybe you're not. Perhaps I would be better off dead. I wouldn't be a burden. I wouldn't be taking all the taxpayer's money (which includes my own, seeing as I pay tax!). I wouldn't have my "free" car, and my £400 a month in benefits, and my adapted house that I pay full rent for, and these things could go to someone who *actually* needs them, and who isn't just fat and lazy. 

I know I'm not lazy (I am fat though, lol), and I know I am worthy of an existence, but knowing other people think the opposite is very difficult. Again, I need to try and ignore them, but my brain won't let me. It plays it over, again and again, all those words and phrases, some directly about me. 

"It doesn't look very disabled." It. I am not even a she. I am an it. This was a comment on a photo from when I was sitting in my wheelchair. I am not sure how I could look more disabled. 

"It could work if it wanted to". There's that IT again. Not even worthy of being a human, simply because I got sick. And they're wrong. Because I can't work at the moment. I'm barely conscious most of the time. I am out of it on medication, or crying in pain. I am lying on my side, unable to hold anything. I am with a carer, trying to wash. I am in the bathroom, fainting. I WANT TO WORK. I am desperate to work. Do these people think I spent decades of my life studying for my degree, my PGCE, my Master's, my Doctorate, all to "sit at home and watch TV all day on benefits" (£400 a month)?? 

"Your car should be one of those blue three-wheelers." Well, do explain how I would fit my powerchair, ramp, hoist, husband, kid, dogs, shopping and whatever other baggage we have into one of those cars, then. Oh? You can't? You're going to call me an entitled bitch instead? Cool. 

I could go on. And on. And on. The hate is real. The vitriol is real. All because I got ill. Understanding it is beyond me. I just can't. I've tried, but I can't. I cannot imagine hating a person for something they can't control, especially when they suffer so much. But they do. They exist. They walk among us. 

Anyway, this has turned into a far longer post than I wanted, so, TLDR:

Still in pain, still don't know why. Things in action like OT, Physio, Carers and tests. Feel down and disconnected. People hate me because I'm ill. 

Maybe now I can talk about yarn on YouTube :)