I’m changing how I do things for a while

Hi pals

I’ve been talking about feeling uninspired for a while and even when I have ideas for posts, I find the motivation to actually create them isn’t there. I’ve been writing more for my WIP and the inspiration and motivation to do that is slim and far between, I don’t want to be trying to force myself to write for my blog and burn out on it and sabotage the progress I’m making on my WIP. So generally the plan is every two weeks will be a post on the blog rather than weekly for a while. I may not even do that depending on how I’m feeling. But the monotonous repetitive cycle that is my existence at the moment makes it hard to write for my blog when all I want to do is complain!

I’ve also been working on other side projects which has taken up time and energy. I’ve had two self tapes/auditions for small films I wanted to try and go for as the pandemic did get in my way. I started dipping my toes in the acting world again in late 2019. If you’d like to see some videos on my experience doing self tapes and auditions as a disabled and neurodiverse person, let me know! Sub to the channel and leave a comment on this video.

I’ve also had to focus more on my health again. I was meant to taper down 1mg of steroids every month but when we tried to go from 9 to 8 first time, I became very unwell within three days and had to go back up to 9 and it took me a while to feel better again. So we changed it to every two months we would try to taper 1mg and it’s that time again. Trying to make this easier on myself, I’ve been doing 8mg one day 9mg the next and onwards to try and make the transition a bit easier and less shocking to my body. I ended up changing it to 8.5mg for a few days (I’ve had to use my pill cutter for this) and I’m doing OKAY ISH and will go down another half in a few days to test the waters. I’ve also been more relaxed on my diet/how I’m eating to make sure I am not stressing my body further with food expectations or eating less than maintenance (my nutrition coach always reminded me that being in a calorie deficit will add stress onto your body, so I’m making sure I’m not in a deficit to not add extra stress on my body whilst trying to taper as that is stressful enough trust me) so I’m just trying to enjoy food, eat more nutrient dense foods like fruit (and veg when I can, I just like fruit a lot more lol) and eating foods I enjoy. Food has always been connected to emotions for me so eating the way I like for a week or so will also help reduce emotional stress. I’m planning on doing an updated What I Eat In A Day: 1 Year Pescatarian video so leave a comment on this video if you’d like to see that and hear about how I’ve been finding the change in my lifestyle.

I’m trying to remember to take my supplements more regularly as well!! Urgh, I’m so bad at remembering to take anything after my morning meds, I’ve been forgetting my evening pills as well and taking them later. I’ve also been taking more pain reduction precautions, using certain creams that are supposed to help (like biofreeze and CBD products) and taking an extra painkiller at night. I’m trying to keep up some weighted exercise as it helps reduce pain for me as well. I did film a few clips over my weekend which I’ll upload soon that will talk about a lot of this stuff and show you what kinds of weighted arm exercises I do etc.

My sleep has been out of whack since the time change (sound silly I know but I’ve read Neurodivergent people do struggle more with this so it makes sense) plus the steroid tapering, I’m pretty tired. I struggle to get to sleep before midnight coz it would have been 11pm before the hour change. Waking up at my usual 8:30 (sometimes 7:30 coz of the hour change) but struggling to stay awake, so some days I sleep an extra hour. I’ve had a few afternoon naps this week as well which is very unlike me. But as I’ve said, I’m doing what I can to just listen to what my body needs, it needs more rest/sleep at the moment and that’s fine.

Some of my upcoming videos planned are 1 year on Adalimumab (Amgevita) injections (check out the linked video for 6 month update), Gossip Girl reading vlog part 2 (the other half of the series, check out part one here), I’m going to continue watching Dawson’s Creek and vlogging each season, I’ve heard there’s a possible reboot coming so more reason to carry on! I’m working on a Manga Reading Marathon video still, the scans that diagnosed my TAK is also one some people were interested in as I mentioned a few in my pre-diagnosis video last year and a range of scans they do use in my TAK 101 post, I also want to do some book themed videos as I’ve been reading a lot of books by Black authors I wanted to make a video to recommend them and a video about the poetry books I have read as I’ve also been reading a lot of poetry through NetGalley. Leave a comment on this post if you’d like to see me make these videos! I also have a lot of books by Asian authors I want to get to reading, I’d love to make a recommendation video on those books too.

I did get my previous benefits back recently so I have got some financial support back again (still, if you know PIP, it’s pennies) so I would really appreciate people checking out my Kofi, leave a tip or buy some of my art. I have 15 art pieces up for sale, plus a selection of handmade cards. Please check out my links throughout this post and to my social media accounts, leave some likes and share some posts, it helps a lot! I post on Twitter, Instagram, YouTube, and Facebook. I am starting to stream on Twitch again but whenever I link it here it error codes out so search artiecarden. Don’t forget to check out my affiliate link with the BookShop for any books you are interested in buying, it helps me out a lot! If there’s something you’re specifically looking for that isn’t on my lists yet, let me know in a comment what you are looking for and I’ll see if the Bookshop have it and link you.

I post pretty regularly everywhere, I just feel like I need to change how I do things for a while.

~ Artie

They/them

5 Main Tips for Being a Better Trans Ally
We Need To Talk About White Privilege
Takayasu’s Arteritis: Rare diseases Day 2021

A Big Health Update: Prediagnosis

Hey pals,

 

I’ve been laid up in bed since my trip to LA. 10k steps minimum for 7 days straight and two 10-12 hour flights kind of killed me. A lot has gone one and this post has been written on the fly. I just want to give a general health update because I can’t really focus on anything else right now?

 

My mental health has quite a dip with my physical health. My body has been so inflamed that even my mild asthma (still to be officially diagnosed) was rearing its head. My chest felt restricted and heavy until a couple of days ago and my peak flow meter readings have been lower than normal. The peak flow is back to my normal range and my chest feels better. When this post goes up, I’ll have seen the asthma nurse again. I saw her before my trip and put my dose up on my inhaler to see if that would help. It’s difficult to say if it has because my health is always fluctuating and one thing affects another thing, which affects another thing, and so on.

 

I felt like someone had taken a bat to my knees after all the walking, and I actually popped a rib whilst I was still away. At Disney Land no less, the happiest place on earth my arse. Most of my pain was in my lower body. I walked 66,721 steps over 7 days, which works out to 31.5 miles. Now you may see why it’s taken me over a week to recover. The bottoms of my feet still hurt from the pressure of standing, a different part of my foot will hurt every day and my ankles swell and throb on and off. I think I may have re-injured my left knee, the original injury is from 2012 or 2013 during college doing a movement class. It was so minor I didn’t actually notice it at the time but repeated use of it when it needed rest made it worse, so over-use of that knee makes it start popping again and not able to hold any weight or walk up and down stairs.

 

Surprisingly my lower back wasn’t too bad on this trip. I think I was good enough with regularly stretching it out and I think the activity helped it.

 

We spent so much time on coaches my travel sickness was pretty bad. I used these acupressure wristbands trying to avoid more pills (plus I’d forgotten to pack any…) I actually found it somewhat difficult to eat and just wanted plain things most of the time, and that’s not really a thing in America. Everything has something on it. I couldn’t just order toast at the hotel diner for example. And everywhere we went for food only had one veggie or vegan option. Not and, not one of each, just one of them. So I struggled eating things that weren’t going to set my stomach off and definitely spent the week trying to manage my symptoms of bloating and, well, inconvenient toilet needs. It has taken a while to get to a better place with my stomach but I still feel a bit like I might have some travel sickness as I’ve not had much of an appetite compared to usual, but then that could also be linked to my stomach problems.

 

Speaking of, I finally saw a surgeon about my stomach issues. We drove half an hour for a 10 minute consultation a few days after I had returned from my trip. He referred me for two tests, which involve MRI’s, dye and needles, yay. Oh and prep for to days before the scans, so that’s going to be great. I’ve been told how awful this stuff tastes for pre-scan prep and I have a pretty sensitive gag reflex. Plus, I’m going to have a cannula in my hand during the scans, or before them, which completely cringes me out. I warned the surgeon so it isn’t my fault if I pass out before I even get started.

 

My rib has been playing up ever since it popped out on my trip. It had been alright for quite a while before that, I feel like I’d been managing my activity well that it hadn’t been a huge issue but now it gets really painful again. My three-hour nap today was mostly to get away from the pain.

 

My blood pressure remains low. So low that my mum’s blood pressure machine literally does not register me as a living human most tries. This isn’t exactly bad, but it comes with dizziness and whatever.

 

I got my letter back from the rheumatologist about some tests I did towards the end of last year (took him long enough to get back to me), good news, I don’t have a heart problem or a trapped nerve in my neck. Bad news, we still don’t know why I’m having these symptoms. Sick one! So I have to go back and see him but that wont be for months.

 

I went to my GP for sleeping pills because of the jet lag, I’ve had a few nights awake and numerous afternoons asleep for 3-6 hours. I’m still not quite there with it all but it’s getting better. I think mostly my body wants to sleep to do some of the healing it couldn’t do when I was away coz we barely slept.

 

I then went to the GP again asking for a referral to a podiatrist to possibly get some ankle supports or insoles or whatever they are. I’ve always been told pain in your body often starts with the feet and this is something I haven’t yet tried. I have quite a high arch and I’ve been told that can lead to some issues. I’ll keep you updated.

 

And I think the final point I have is that I am going to try some CBD oil for pain and sleep management. I’ve read it is supposed to have anti-inflammatory affects and, considering my whole body is inflamed, I think I could do with that. My GP said that he can’t really advise on using it because there’s so little evidence and not a lot of studies done over here, so he can’t tell me if it might affect other medication I’m on etc. but I’m going to give it a go anyway, maybe start with evening doses to be safe. I’ve seen so many people in America talk about CBD products and how great they have been for chronic pain of all kinds, I feel like I need to give it a shot. Apparently the oil is gross but that’s my only option in the UK. There is an organisation that provides CBD treatments but it’s for a very small amount of chronic pain illnesses/general illnesses and it would be impossible for me to even be seen by anyone.

 

Hyper-mobility Syndrome is so under researched that people want to keep changing my diagnosis and can’t offer me more than basic physio and a variety of painkillers. Even medical professionals don’t understand how I am in so much pain or why. And everyone you tell wants to put their two-cents in and tell you to exercise or go swimming or change my diet as if I haven’t heard that before. It gets really fucking tiring dealing with this all the time… The days I want to be normal I can’t and the days I want to be treated like I’m disabled are days when no one bats an eyelid about our activities that day or don’t notice me flagging.

 

I wish I was a normal 24 year old.

 

~ Artie

Why I don’t think I’ll ever work

Hey pals,

 

I’ve been realising recently my body’s reality. I went for a job interview recently for a full-time role. It was something I think I would have enjoyed and felt fulfilling, but the hours and amount of admin work is what made me think. It was 7 hours a day, 5 days a week, every weekend (or at least every other weekend) at £8 an hour. Maybe up to £10 if I proved myself in the role.

My health isn’t steady and predictable like a full-time job. There are lots of things I can technically do. I have use of my legs, so technically I can stand. The impact of standing (or sitting, or walking, just doing anything for extended periods of time) is what healthy people don’t understand. I’m always in low levels of pain, some days it will just be worse without reason. Some activities will exacerbate it.

One part of my disability in particular that has become increasingly debilitating is the use of my right arm/hand. This is my dominant hand. I do everything with this hand. Overusing it means I can’t grip things properly, there is weakness in the muscles, or searing and burning pain. I can’t write for long, it will hurt. I can’t use a knife to cut certain foods at dinner as my joints lock. I can’t carry things. I’ve found recently I can’t even use a mouse/track-pad comfortably if the pain has been high. I’ve been trying to do some DIY recently; I can’t even paint the shelves I’m working on. It all hurts so much. Things you take for granted.

Brushing your teeth, opening doors, using a hoover, holding a glass, holding certain kinds of mugs (I’m looking at you, Costa! Your mugs are ridiculous and I always have to ask for a takeaway cup…).

It’s a throbbing pain when it’s resting. My disability even makes it hard to stretch out. I have hyper-mobility syndrome, I’m too bendy because my ligaments are stretchy etc. etc., so I have to get creative with the stretching to finally get the right muscles. Half the time it has been so bad recently I’ve had to ask my mum to rub it and I hate asking people to help reduce my pain.

And then all the fatigue that comes along with being in so much pain all the damn time. Even if I sleep well, I will still feel tired and if I don’t it will hit me later and I’ll feel like I have the flu. Total exhaustion, dizziness, hot/cold, all over aches. I normally burrow myself away into a dozen pillows and a soft blanket, my recent addition is a very soft and warm onesie. Another addition is evening headaches or migraines. I had to ask my mum to stop crumpling paper next to me because it felt so loud. It felt like someone was slowly digging a screwdriver into the bit between my eyebrow and tear duct.

So I feel this renders me pretty incapable. I did email this job and say that a part-time position would be best for me if they had any available and I had lots of ideas for the job. But I’m not sure I’ll get a reply.

For now, I’m working on my left hand dexterity (it’s pretty useless but I have got enough things to do to practice!) so that I wont need to use my right hand as much and will still be able to get things done whilst I await a neck scan to see if there are any pinched nerves or slipped discs that could be causing all this pain in my arm. I’m looking into applying for ESA if this is going to be my long-term, but otherwise I’m still doing to same old same old of trying to earn a bit of cash where I can. Right now, I can’t imagine living independently. My family take care of so much for me right now, I guess this is where I need to be.

 

 

~ Artie