My content uploads have been a bit all over the place recently and I wanted to give you an update of why that is and what has been going on. At the start of February, I had my regular income taken away from me, my benefits were stopped. This wasn’t a lot of money but it afforded me to see my chiropractor and my therapist (two very important parts of my care that cannot be provided for free on the NHS) as well as pay my phone bill and my car tax. I’ve been more active with setting up my Ko-Fi art shop and posting on there to keep people updated with what I’m doing (projects wise etc.) and I’ve set up a fundraiser as I really feel like I need to get a diagnosis/assessment for Autism and ADHD. The last year I’ve been seeing more and more traits that link to these two conditions (I talk about it a bit in my recent video where I read Act Your Age Eve Brown about two autistic people falling in love) and I have chosen to go privately. I’ve decided upon this because the assessor was recommended to me by my therapist, I trust her a lot and have spoken to her at length about my thoughts and feelings re: ADHD and Autism, plus the waitlist on the NHS is very long, and having just been through quite a triggering situation with my benefits, I am terrified to open up about my experiences and struggles again to a stranger in case I am told I am making it up or I’m not really ‘that bad’. So I would rather go to someone my therapist knows and recommends, and has experience referring previous clients to and had positive feedback from. Not that I really need to explain this to you, but I like to keep things reasonably transparent as part of my thing is showing you what it’s like to live with disabilities and chronic illnesses.
So since my benefits were stopped, I started to quite aggressively go through cupboards and such in my house, looking for things to sell on vinted, facebook marketplace, depop, twitter, wherever really. I kept a lot of this info on my ko-fi. With a mixture of really generous donations and having sold some larger scale items, I think I may have just about covered the money I had lost(for one month at least). I still have a lot of items up for sale and to sell (please check out my selling platforms, a lot of stuff is up very cheap) and even started selling my art.
A bit before all this started, I’d sold three blackout poetry pieces out of nowhere! I had them up very cheap, just curious to see if anyone would be interested, and they were up for quite a long time before someone was interested but with that one tiny success came a lot of support on twitter and I sold two more pieces that way. I started finishing and listing art on my ko-fi (once i realised you could actually use it as a store, and you get 100% of the money which no other site provides! so it means I’m able to keep my art sale costs low) I finished an old painting of a hand in like a galaxy/magic glitter style which my friend bought. I listed the remaining blackout poetry pieces, and another friend bought a piece. I then started dabbling with a new concept I’d been thinking about for a while: my great grandparents went travelling a lot in their lives and took hundreds of pictures. Last summer, my mother and I went through all these photos ad picked out the ones to keep (of them or of my mum etc.) and I kept a hold of the rest that were mainly scenery. They went to places like Switzerland, France, Italy in the 80s and 90s. The film photos have this beautiful vintage quality to them where some of them look like scenes from independent films. So I started turning them into poetry art pieces and listing them on my Ko-fi as well, another friend bought one. Part of what made me start creating art was the desperate need of finding an income. I have all these supplies at home to create art with that are taking up space and gathering dust, it felt like the right time to start using them and experimenting with what works and what people like to buy. The only cost, really, is my time and labour. I also have a lot of old pieces that are finished or just need some final touches on them. Why not try to find these a new home where they will be loved and appreciated?
Then we also had Rare Diseases day, where I wrote such an extensive essay on here that honestly barely covers the surface of what living with Takayasu’s is like. I had planned to write up a blog draft but ended up hyper-focused on it for two solid hours, wrote 3500 words and found 6 references at the time. I later went and added further website links and other useful references including youtube videos. This had so much support from the TAK community, I think it reached 500 views in a week which has never happened before and now I have a handy guide to reference in videos and blog posts and when talking to people for, not only a basic 101 of TAK, but also my personal experiences mixed in there too. This is another example of when I’ve had to open up about my pain and been ignored by professionals, so I have a long history of being gaslit by medical professionals and I’m not the only one who has been through this either.
I’m making and posting a video soon on my experiences on steroids, again as a reference for what I’ve been through but also a helpful little selection of anecdotes for people new to this medication, but I have been on then since June 2020. We have been slowly trying to taper down the dose from 15mg. I’m currently at 9mg. At the beginning of March, I dropped to 8mg. The first two nights I had mild night sweats and by the evening of day three I was experiencing such awful chest pain I was concerned I needed to go to A&E. My body was not okay, it was really not ready to drop the dose. I ended up taking a couple of 1mg steroid pills that night as my other painkillers weren’t touching the pain, and going back up to 9mg the next day. I felt better, my chest was tender but not IN PAIN like it had been the night before. I felt miles better after my Adalimumab injection on the friday, and that evening (March 5th) I also got my first COVID vaccine! I had no side effects, the injection itself was basically painless. I had a couple of energy crashed the next day but that was more down to what I was doing.
Check out this post on my opinions on taking medication.
I also had a few articles to edit, a book to read and video to make on it for a book tour, I was also working on my NetGalley reviewer rating, and feeling dysphoria, I’ve just been dealing with so much all in one moment that it has been hard to get or stay on top of everything. I mean I made a silly video Watch Dawson’s Creek With Me! because I was just so tired and burnt out I just wanted to watch a show I like and talk about it. My chronic illness related videos always do reasonably well, like this one on Hair Loss and Tips, but I was going through so much medical related trauma and triggers it just wasn’t on the cards to talk about it all. I was and still am exhausted. I couldn’t face putting on make-up for videos or photos. It helps me feel put together and ready to make something, but I couldn’t put myself into that mode. Especially when three weeks were dedicated to analysing the report on my health and writing an argument letter three pages long to convince someone that I have been wrongly judged and had a lot of assumptions made about me. All by another disabled person, which always stings more.
My only spaces of solace have been my one zoom yoga class a week (which is so severely discounted thanks to the lovely teacher I can still access it) and my zoom meetings. That includes my therapy twice a month, my weekly Sick Sad Girl meetings where a bunch of us gather on zoom to talk about a topic in relation to our lives and chronic conditions and just feel heard, zoom interviews for people’s Master’s or BA research (it’s actually very funny and validating talking to a stranger who is interested in you and your experiences of things, it’s nice to get some of these things off your chest) and occasionally facetime/zoom calls with friends or movie nights on Prime. I’ve been focusing on trying to actually connect with people in my life and face-to-face because I’ve been locked up for a year. Outside of my family I’ve only seen one friend in person (and it has always been distanced) and a couple of friends on facetime or zoom. I’ve barely left my house and even without everything I’ve been through since 2021 started, I would have found lockdown 3 really difficult anyway. I’m really lonely. It’s why I sunk into reading books and read 12 in January and 10 in February. I can’t sleep without constant noise, I can only shut my brain up by watching Among Us let’s plays because I’ll be focused on the tactics and figuring out who the imposters are, I can finally relax and fall asleep. This has been my nightly routine for months. I’ve watched all the videos from people I enjoy, multiple times, I’ve run out of videos. I specifically like Julien Solomita’s Among Us streams so I tend to just re-watch those endlessly.
A lot of my friend’s are going through it too, I won’t get into details obviously, but so many people are hurting right now. People I know, people I don’t know… it’s hard to ignore and focus on caring for myself. I take breaks when I need to. I’ve barely streamed (by barely I mean I literally haven’t once) because I’m tired and can’t do all these things I need to do whilst also trying to take care of myself. I would love to do some art streams where I sit and make art but it’s just not mentally plausible right now.
The day I wrote this up, I filmed two chronic illness related videos. I also have vlog type reading videos coming as well I just need to sit down and get to editing them. I think my post on here next week will be a collective book haul from end of December to roughly now as I’ve been picking up cheap secondhand books and new books with Christmas gift cards, and it is a simple and easy blog post to make. This is partially why I make a lot of book content, it’s easier on the emotions but also one of the only things I’ve been doing recently.
Please check out my Ko-fi and consider supporting me as I make a lot of free content for entertainment and education. Follow me on Instagram and Twitter to keep up with what I’m doing. Subscribe to my YouTube for video content. Follow my Twitch for updates on when I start streaming again. Like my Facebook page if that’s the social you use the most! Hopefully I’ll see you next week.
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