This is officially my 100th post on here (though I have privated a few older posts recently, but it counts) and I don’t know what to do with it. I thought maybe a general life and health update, I haven’t done one of those in a while and things are pretty different. A lot has been happening. Lockdown has been good and bad for a number of reasons. Personally, it’s been good because I finally felt like the playing field was levelled. I was finally the productive one, people were creating more virtual content and doing auditions virtually and day courses, rather than requiring physical attendance. I’ve gotten a lot done at home and I have sold a lot of things leading to some more money, more space and much more organisation. And I’ve had the chance to care for myself and do therapy from home which got rid of the travel anxiety of going to appointments. This has all been great and helpful for me in many ways and allowed me the space to adjust to life struggles.
However, roughly since the BLM protests, everything socially has rolled downhill. JKR being a massive transphobe and being defended by hoards of people, reading Harry Potter for the first time as an adult and being deeply heartbroken by the ableism I’ve not seen anyone talk about dripping from her pages. Forced DNR’s for disabled people who end up in hospital with Covid, if you don’t sign they will grab any old doctor to sign for you. Naya Rivera’s death actually hit me quite hard after I finally watched Glee and saw the wonderful character she created and the wonderful and outspoken person she was. Conversion therapy still being legal in the UK and it not being made illegal… People not wearing masks anymore, or trying to social distance, and just going out doing whatever they want whilst the UK has the highest death/contraction rate in Europe and second in the world? And we are coming out of lockdown? Acting jobs are already requiring in person auditions instead of virtual video calls. I’ve been publicly misgendered and wrongly named a few times recently which has been hard to deal with. The fear of a third gender marker because, whilst I am proud to be nonbinary, I’m also terrified of showing my ID to someone or someone seeing my ID who turns out to be a transphobe! Police, bouncers, bartenders, any random person who might end up seeing my ID, terrify me. It’s one of the reasons I’m ‘in the closet’ in hospital with doctors because even though I like and trust my doctors, I am scared they will look at me differently if they knew. And now my mum being bullied into going back into work again even though it’s not really safe yet for us. But there you go, capitalism. So, it has been hard existing in a world that so violently hates marginalised people and blames us for everything wrong in the world, when actually it was all caused by them and the 1% they keep voting in and falling for! Large exhale. I try not to think about that too much because it is hard living in a world that just kinda mostly wants you dead. This is why we need allies to speak loudly with us and do some fighting for us, I don’t have the energy to prove my worth over and over again. I and many others shouldn’t have to prove we are worth saving, you should just care for people, yanno? Sign some petitions and email your MP’s please.
My health is the next big paragraph. I basically was diagnosed with a really rare disease that only 2.5 people per million are diagnosed with in the world. It’s a rare type of large cell vasculitis called Takayasu’s Arteritis, it affects the arteries around the heart and limbs. I have narrowing of the artery in my right arm, this has been a thing for years and what lead me to search for answers as I experience muscle fatigue from repetitive use. This is because there isn’t enough blood supplying oxygen to my muscles, it can’t get through the narrowing quickly enough, basically. Then I found out recently, I have more narrowing that showed on a recent MRA scan which means my left arm is now at risk. We bumped my dose of steroids back up a little to 15mg which is reasonably low for things like this and I’ll be having a blood test soon to see if I maybe need an even higher dose. But this scan did show my thymus gland is fine, we were concerned I might have a growth on my thymus gland (which is in your chest) which could mean cancer. So at least I don’t have cancer, right?! With all this as well I’ve been struggling with my diet and weight. I have been trying to do as much anti-inflammatory work as possible with my foods and supplements, I went from vegetarian to pescatarian for the omega 3 fats which are huge in fighting inflammation. 10 years a vegetarian and I made this big decision for myself to try and give my body the best chance. I do also take fish oil supplements and turmeric but they haven’t done a damn thing, my inflammation in my bloods is creeping up and my colon is also inflamed again, levels have tripled since January. My biologic I started at the start of lockdown has clearly not done anything? So we are looking at changing to something else but it’s mainly used for Takayasu’s not often for Crohn’s so my Rheumatologist needs to speak to a million people before we okay it and everyone is on bloody holiday so it looks like at least a month before we know. Steroids and struggling with my eating habits have slowly put on some extra pounds of weight, which is common but still hard to deal with. I am at a weight that makes me anxious and uncomfortable. I was trying to intermittent fast but I found it wasn’t working with my food needs so am just trying to eat more intuitively and listen to my body. It actually took a few days for my body’s natural hunger cues to come back coz I was just over eating from boredom so long my body wasn’t really hungry. So we are on that journey along with my exercise journey I’ve been on through lockdown where I’ve just been trying my best to move more. I started slow by using the wii fit early on, then I would be going for walks after dropping post off, and more recently I’ve been using my stationary bike (mostly because the rain was preventing me from going on walks) and also incorporating weight lifting. I’ve read weight lifting will help my veins be easier to access for blood tests and cannulas, but also helpful for my Takayasu’s as it is supposed to force more blood through my arteries and veins that maybe it’ll undo or prevent damage. We will see, but I’ve been doing well on that front and I’m really proud of myself for it as I’ve not been this consistently active since I was in college and studied performing arts and did so much physical activity and dance all week. I’m feeling fit and enjoying exercise and I think it is helping my mental health a lot too. I’m also creeping up on 2 years smoke free, I quit smoking in September of 2018 and it has been surprisingly easy to keep off them considering I smoked on and off for a decade. I still miss it sometimes when I’m out with a friend who still smokes or writing a character who smokes, it was a huge mental health crutch for me but I’m glad I quit coz it makes Crohn’s and Takayasu’s worse. I have met a really lovely lady who works with other people with chronic conditions based in Wales who has offered to give me a hand and some support with some of this CRAP! It’s funny I just stumbled upon the support group she organises that has been moved to zoom sessions since covid, otherwise it’s all based in Wales. They have accepted participants from other places around the world too during this period, clearly aware not many support groups would have done this. She has offered to chase doctors and services for me as I’m in this very annoying limbo waiting period, not very confident with ringing people, and a big part of her job is just chasing down these services that are being a bit lax with patient care. So I’m feeling a bit more relaxed and hopeful that she may help get some things moving for me, and she sounds like she knows what she is talking about and what the doctors dealing with my care should be doing. Having someone more in the know doing this is super helpful and makes me feel a bit more relaxed. Hopefully this will mean good things. I also saw today there’s an infliximab biosimilar injection possibly coming to Europe soon, which would be a fantastic option for me as my veins aren’t good enough for infusions to be done regularly along with other tests and scans I need regularly, and infliximab is often used for both Crohn’s and TAK. That helps to ease some anxieties coz even though I’m sure it won’t be available for a while, it’s something I can bring up with my doctors and see if they can find out more for me if they decide tocilizumab isn’t the way they want to go.
Obviously, I’ve spent lots of time at home with my mum and my dog. It has been good for the most part, being together so much can put a strain on things. Layla, my dog, has finally learned how to play fetch! I’m so proud of her, she’s a collie mix and a rescue who has her own ideas of what she wants to do but has been picking up training over the last couple of years really well and she is so much better behaved now, still has her moments of being crazy and has no recall off lead but there has been a lot of improvement. 5 year old rescue dogs are easier to train that humans, evidently. My mum has been working from home until recently because of my health. Early lockdown she was still checking on a surgery site that was VERY slow to heal, and then starting my imraldi injections, and then going on steroids, kept me in the high risk category for a long time but I have been okay’d to relax it slightly so I can social distance more so now, so I’m hoping to see one of my friends from London soon and my local friend has popped over a few times to socially distance sit and chat in my garden, and it has really helped! My friend in Newcastle sent me a care package a while back when I was feeling really depressed and they have been putting together zine’s which has given me something to do and work towards and I’ve submitted my art to each volume. Having a reason to do some little line drawings again has also helped a lot and it has been a lot of fun. My mum and I started baking early lockdown but it made us argue so we stopped even though I masted the perfect banana bread… but we take drives to get out of the house and kept coming across little plant and food sale stalls on the roadsides and started picking up bits and pieces. We now own two tomato plants, some lettuce, leeks, and we pick up some home grown veg from these stalls which has been a nice change, there’s definitely a difference in taste.
I’ve had my productive moments and my entirely demotivated times, and that’s okay. I think overall I’ve been very productive. I’ve gotten my WIP up to 6.25k words, meaning I technically have enough words for applying for Masters, but I need a lot of editing and feedback from friends! I’ve updated a lot of my blog posts and learned a lot about SEO for my blog and youtube, which was no easy fete it’s so hard to understand! But I’ve gotten somewhere! I’ve done SO MUCH reading I quickly smashed my 12 book goal for the year and whilst writing this I’m somewhere around 35 out of 50, but if I keep going at this rate, I might have to push it again! It’s possible because I’ve been enjoying re-reading old manga and they’re so quick and easy to read I almost feel like I’m cheating. I’m trying to demolish some of my physical book TBR because a lot of these books are super old and I want to be able to unhaul any books I wasn’t that fond of and give myself some more shelf space. I have absolutely gotten rid of a lot of books several times over but looking forward to more being unhauled and finding them a new home or being donated.
I briefly dabbled in a bit of clothing upcycling or thrift flipping as a lot of people are calling it now and made a few items more useable but definitely have some half complete projects and other pieces I need to make up my mind what to do with… hmm. But I’m taking a break from that for the moment! I’ve been working on a lot of collaging in my 2020 notebook, I’ve basically filled the whole thing and got so bored at one point, I found a new notebook to start preparing for 2021 and putting some energies out into the universe that next year will be better (please, lord, whoever u are give me this solid) but I find collaging both satisfying and relaxing so it has been a helpful activity for times I am physically fidgety but mentally not really there.
I have watched everything there is to watch on Netflix it feels, this isn’t true obviously, but I hate the algorithm of Netflix and YouTube because if you go through a patch of watching one type of video, that’s all it suggests to you forever and I like to watch a variety of things and hate that it doesn’t easily show me a range of shows except what’s popular… I’m trying to update some of my LGBT+ Netflix posts but the few I still haven’t seen are just not of interest to me… or I’m not in the mood for currently so I’m a bit stuck!!! And everyone recommends the same five shows when I ask. I’ve gotten into watching a lot of true crime, mostly on youtube, but occasionally documentaries. I’m not sure why we enjoy these so much, I think it is morbid fascination.
I’m currently just exhausted of trying to do everything. I feel like I need to make some life decisions on what areas I want to focus on in my life because I do feel like sometimes I struggle doing any of it when there’s so much of it I wanna do. But I have a lot of limitations, and I may have to put a dream to one side for a while. For now, I’m just plodding along.
I hope you enjoyed reading this about me and my life. I don’t often talk about myself in this way, but I feel it’s important to share what I go through as the person behind the blog. I hope this might highlight some things for others to think about, but I also just hope it has help you get to know me a little better and that maybe you’ll follow my blog to keep up with me and what I’m doing.