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

Clothes Shopping: Midsize and Disabled

Hey pals!

This is a post that has been planned and pre-written/experienced before lockdown, don’t worry, I am keeping safe and haven’t left the house in a month. I wanted to talk about what it’s like to go clothes shopping on the high street as a midsize disabled person… coz the facilities are pretty minimal in most shops, it can be really difficult to do.

I have different levels of shopping, I always start with window shopping/browsing. I take a lot of photos of items I like and their labels so I can find them when I have more time/energy. Before lockdown I used this as a mode of exercise when I needed to be in town for my Chiropractor or a massage, I’m quite an anxious person and end up being somewhere really early. (Well, you never know, I might struggle to find parking where I usually park and have to find somewhere else in the annoying one-way system and I’d rather be too early than LATE) So, I often have something like a spare 20 minutes before appointments and some time after (coz my ticket is usually up to 2 hours parking) and I find I can walk more when my brain is distracted by stuff.

I saw a few pairs of trousers that I like and all looked very similar. The difference? Apparently only colour even though on is ‘Lift and Shape’ but the other is ‘Tori’? I’ll let you know now, I didn’t go with Tori, just like in every election I’ve ever voted in.

I also really liked these t-shirts, but only the one on the left came in my size, or anything CLOSE to my size. Seems like the biggest most clothes go in NewLook is a 12. I took photos though, in case I ever came back in or wanted to find something similar elsewhere. Sadly not yet. I ended up buying the light blue top but recently decided it’s not really me and is too similar to the colour of my jeans so will be selling it on depop. I really wanted the yellow top, I’ve fallen in love with mustard yellows.

I decided on this trip (A different one, and this is the next stage of shopping) that I would try on some of the clothes that caught my eye and see which I liked on me more. I can’t trust high street sizing, even in men’s sections. It’ll say 34 waist and be too big, but pick up a pair of 34 waist shorts? Can’t do them up! But that’s a lesson I’ve learned so I have to try things on, especially if they’re a big purchase. This first pair of trousers looked nice on the hanger, but the material resembled something cheap and thin I would purchase off Blue Banana in 2010 as a teenage emo. They were dreadful and looked horrendous on. Clung to all the worst places. These were a quick no.

I struggle in changing rooms coz I need to get a decent distance from a mirror to see if I like the item I’m trying, so I tend to go down the end and not use a disabled cubicle even though I am entitled to it. A lot of these non-disabled stalls don’t even have a bench to sit on inbetween item or to help you pull things off or on. On this trip, this store doesn’t have seating anywhere in the changing room except right at the entrance for those waiting on someone, or in the disabled stall. Standing for too long, I get quite dizzy and sick. Plus, changing rooms can get quite stuffy and the lights are so industrial… It’s just not a good place to be sat on the floor wondering if staff could get you water or let you use a toilet. Oh, also I can’t really tell the difference in these photos which jeans are which!

I realised that I’d picked up a pair of trousers with short leg, and though I liked the look, I like the idea of flexibility so I got them in the Regular length so they at least grazed my ankles. After trying on three pairs of trousers and nearly passing out/being sick on the floor, I had to pile back on my usual clothes including a coat coz it was chilly that day and go home… I think I went and got some food and a drink first so I would stop feeling so dizzy. I took pictures so I could look at them later when I regained some brain function and make a decision. I had to come back at a later date to actually make the purchase. I bought them in a size 16 because size doesn’t mean a damn thing, I wanted to be comfortable, and the cashier confirmed that NewLook clothes run small so bare that in mind when you go shopping there.

 

This isn’t supposed to be some super hard hitting piece about how HARD it is being disabled, it’s just a commentary pointing out how weirdly inaccessible shopping for clothes is which is why many buy online. I never find clothes that fit me online unless I’m going oversized so this is the best I have, but like… can we turn down the intensity of the lights please? They don’t flatter anyone and I’m gonna get a migraine.

 

~ Artie

 

 

Check out this article on Huffington Post by Wendy Lu about the inaccessibility of the acting industry and education systems and how grossly ableist they are!

Bored? Like shopping? A UK reader? Check out my depop I have much available for sale!

The Cost Of Being Disabled: My Reality.

Hey pals,

I saw and responded to a tweet about #thecostofbeingdisabled and I just wanted to turn my thread into a more detailed blog post. I want to show people (both able bodied and disabled) what I go through personally, because none of us are the same. My list wont be the same as another disabled or chronically ill person’s but there will be many overlapping experiences. I wanted to write this and create solidarity among disabled and chronically ill people. Share what you go through.

restricted diet: branded vegan or free-from foods are more expensive. replacements for milk and butter are often more expensive whether it’s lactose-free or a plant-based replacement.

IMG_1054

extra vitamins and medication: to make sure I do not become deficient due to my gut health and restrictive diet. Turmeric for inflammation, coconut oil tablets for healthy fats, vit c to boost immune system that I don’t have, multi vitamin, magnesium as it is in most inner body functions and many people are found to be deficient.  I currently take something like 10 different supplements. I also pay a lot for paracetamol and rennies (deflatines) to help with pain and bloating, and before fully giving up lactose I used to buy lactase enzymes too. These can cost anywhere from £3 to £20 a packet or bottle.

Homeopathic: balms and oils for pain relief and help migraines(£3-£5), CBD products(£5+ depending on item), sports injury products and supports, k tape, chinese medicines and patches. Massage therapists, chiropractors, osteopaths, acupuncture, because NHS staff are no longer hands-on and to get some immediate pain relief and relaxation you must go private. They are anywhere from £10 to £60 depending on what they do and length of time.

IMG_8241

Walking aids: different walking sticks to suit occasions, I have a nicer looking one for nicer occasions(£20), I have a couple of fold up ones in case I may need it later in a long day or travelling, gifted to me by family. Driving everywhere as public transport isn’t always accessible, driving to many doctors and hospital appointments, support groups etc. to fill my tank is £60. Heel pads/insoles in my shoes and having to spend more on better quality shoes. I also have been told to buy gel heel pads for my Plantar Fasciitis.

Having a backpack full of ‘just in case’ supplies. Gives me a bad back but I often need everything in it.

Using a heater at weird times of the year because my body temperature is a struggle. Bad circulation in hands and feet and often need heat pads, hot water bottles, electric blanket to warm up. Getting night sweats, needing to turn heating up or fans on to try and neutralise this.

Glasses with screen protect gloss or sunglasses because my eyes are sensitive to light and can have migraines. These often come at an extra price and not really packaged in. Also just needing to get my prescription updated more often than most people, losing glasses so ending up with many pairs that all need updating even if they are the spare pairs. Contact lenses too, you can’t take back and get money off for unused contacts, that’s something they should look into coz I have loads the wrong prescription and can’t really use.

Toilet roll, water costs, and baby wipes and other single use items like cotton balls or pads. Washing underwear a lot or regularly replacing it from having crohn’s. I now have Adalimumab injections that often require a cotton ball to soak up the slight bleeding after. More focus on oral/dental health as this is often the first place for bacteria and infection, so electric toothbrush heads and floss are important.

Testing different at home equipment that may or may not help for the hope of some pain relief. Memory foam pillow and mattress, many pillows. The possibility of replacing the mattress more regularly because you spend a lot of time in bed, in the same position.

Brain fog: notebooks for writing notes and lists for myself and others to try and prevent forgetting to do or tell someone something. Having multiple because I lose them.

Paperwork Organiser: files of all shapes and kinds and colours with labels so I know what is where.

Buying self help books: mental health guides, therapy guides, memoirs or biographies about people who have dealt with similar health conditions so we feel less alone and more educated. Books vary in cost from pennies second hand to £30.

Buying other products suggested to help something going on with you because you’re so desperate. After having Erythema Nodosum, I had discolouration all up my legs and on my elbows that looked like bruises. I used caster oil with lavender oil on them regularly as these are meant to be a natural lightener. To be fair… I think it kinda worked. My legs are looking nearly entirely back to pre-Nodosum.

Screenshot 2019-07-26 at 15.07.31

Needing some kind of home staff like my family personally have a cleaner (some people have an need personal assistants which have slightly different job roles etc.) because I cannot change my bed sheets or regularly clean any part of the house it will always be a half done job and wipe my energy levels out entirely so a cleaner for a few hours once a week has been a game changer for me and my family.

Emotional and social costs:

Not being able to just go and enjoy a meal out or at a friend’s house.

Losing use of my dominant arm, stopping me from being able to type, write, wash myself, cut food, feed myself, opening bottles or jars, swimming, exercising in general.

Not being able to live alone. Needing someone to care for you, make sure you are fed because you cannot cook for yourself often. Helping you keep clean and keeping your rooms and clothes clean, because changing a double bed is a lot harder than you think. Also I don’t receive enough money from PIP to live alone and don’t make enough from any of my money earning ventures to cover those costs.

Never knowing if your symptom is normal, part of something you already have, a cold or the flu, or something else entirely. Always stressed about what these could be or what could happen.

Never knowing if or when it will get worse and what ‘worse’ means next time.

Trying to buy accessible/disabled ticket for gigs and events can be really difficult or nonexistent. Wasting many hours chasing people, researching, making phone calls, just so you can try and comfortably enjoy an outing. (Me, crying about not getting MCR tickets because the phone line didn’t actually work for ages I was on that phone for several hours before I got a ticket and a carer ticket)

The anxiety of having to be reassessed for PIP! This is awful to go through and you have to keep going through it even though most people on PIP have chronic conditions that will never be cured and are very unlikely going to get better. But they put you through it every few years and often deny you, make up absolute shit, and deny you it and you have to appeal and wait even longer and go through even more stress!

Your version of the future changes with each new symptom and condition.

Medications and illnesses causing physical changes like weight gain or loss, acne or facial inflammation, the bruise discolouration I had on my legs, hair loss, teeth problems, etc. making it difficult to feel good in yourself.

This list will vary with each person. This list is also probably incomplete because it is impossible to remember everything that you’ve lost or sacrificed especially when you want to focus on maintaining the level of health you currently have. There are people who would wish their disability or illness away, and there are people who wouldn’t, and both of those are valid and acceptable. Not everyone is the same, but able bodied people often don’t see what disabled and chronically ill people go through on the daily. I just want to help open some eyes.

If you want to become more of an ally for disabled people, check out this video by Molly Burke, a Blind YouTuber and motivational speaker, 5 ways you can make the world more accessible. 

~ Artie

Subscribe to my YouTube

Like my Facebook

Follow my Instagram

Body Shaming When You’re Chronically Ill

Hey pals,

 

I’ve been hearing a lot about fatshaming in the medical industry and also general body shaming and certain standards people are expected to meet online recently. I have a long, complex history with my body and other people’s relationship to my body so these topics have brought up a lot for me I wanted to discuss.

 

IMG_1991

I don’t talk about my weight online, not in specific numbers anyway, because everyone changes their opinion of me once they hear the number. It doesn’t matter if its the weight on my scale or my BMI, people make a judgement they didn’t initially have. My BMI is currently in the ‘overweight’ category leaning close to ‘obese’, and I’m not trying to be up myself here but how am I nearly obese? I am an average mid-size person, but the NHS BMI calculator is saying I need to lose 26.5lbs (12kg/almost 2 stone) to be in the healthy weight range (not mid-healthy i mean barely in the range).

About 6 years ago I was two stone heavier and I received enough fat shaming from my NHS health team to make me want to die. I had to be weighed for my contraceptive pill and I had purposefully been avoiding the scale and said, “as long as you don’t tell me.” and stood on it. I did really well not to succumb to the temptation of looking all for my doctor to just outright tell me anyway! Of course as soon as I hopped in the car I googled the number into ones I understood. I always worked in lbs. And that night I wanted to die.

Before I had gotten to this weight, I was probably roughly the weight I am now maybe 10lbs lighter, and I’d finally decided to go ask for professional health with my disordered eating. I’d told him all the things I had done and been doing and how I was trying to stop doing them, and even though my behaviours fit best with Bulimia, he told me I had Binge Eating Disorder (BED) ignoring all of the self destructive things I was doing from starving myself to purging, I barely even binged, my binged were minute compared to other bulimics I’d met or other binge eaters. I was astonished. Part of his advice is what lead me to gaining so much weight so quickly and sending me even deeper into depression and triggering me more. All of the note books he gave me were for binge eating, not starving or purging or any of the other things I did. All because I was ‘overweight’ by BMI standards.

I’m disabled. I suffer with a lot of chronic pain. I have been told countless times to lose weight because that ‘will make it better’, without thinking about anything else going on with me. I suffer with so much fatigue I barely function 90% of the time. Exercise wipes me out for DAYS. But we should all exercise for 30 minutes a day and if you don’t YOU’RE LAZY.

 

At this point in my life, I am dealing with a very unstable IBD. As I write this, I feel nauseous and cannot eat my dinner and had a couple of bad episodes on the toilet because I accidentally ate something triggering to my stomach yesterday and now just have to suffer. I have barely moved from bed today. I also have an abscess in a VERY uncomfortable place which means I can’t do most of the exercises I’ve been recommended and felt able to do: walking sometimes aggravates it, I can’t sit on a bike seat so can’t get on my exercise bike for 15 minutes, I can’t really leave the house to go to the gym or a yoga class coz I might suddenly be in so much pain I can’t participate and may not be able to drive myself home. But I’m lazy for being overweight. I’ve fiddled with my diet constantly, partially coz I’ve had to cut out foods that trigger my IBD flares, but also trying to get the right nutrients into my body without fucking starving.

I’m bad at feeding myself, coz either I’ll forget and suddenly be so starving I feel sick, or all I do is EAT. I’ve been put on steroids that make you want to eat. At one point, I couldn’t stop eating even though I was so full I wanted to be sick. With an IBD, weight loss is BAD. Either your gut isn’t getting enough nourishment from your food or you’re shitting so much of it out so quick there’s no time for your body to absorb it. So, I guess at least they worry if I’m looking more trim lol.

 

“Just go for a walk,” they say, “anything to raise your pulse,” they say… but anything I like doing I’m not ‘allowed’ because of my disability so OF COURSE I’m not consistent with exercise you tell me I can’t do stuff I enjoy. One doctor even told me I only enjoy those things because I am good at them, because of my disability… is that a crime? Am I not allowed to enjoy things I can do? Ballet and yoga don’t hurt me as much a circuits or zumba (which gave me shin splints btw). I also found out recently I can’t even swim anymore because of muscle problems in my right arm, it’s too painful to actually swim… the number one recommended activity (which I also don’t really like but now I can’t even do)

 

We constantly see skinny people selling us health and size as if it’s easy to reach without a 6 figure paycheck, a personal chef, personal trainer and surgery tbh. And the ‘normies’ of the world who don’t have a disability or chronic illness that takes a toll on your energy and activity level like to cram it down our throats that we just aren’t doing enough. There’s 24 hours in a day, you can use 1 for exercise. But… I sleep 10 hours on average, some days more, I’m slower to do things, I have to remember to take 1500 pills morning and night, doctors appointments and how I’m going to get there and be emotionally prepared for what they are going to say, or wow I need to cook myself dinner but I can’t bring myself to stand in the kitchen nor think of a meal I could make… Check out the spoon theory if you need more explanation.

IMG_6495

Not everyone can walk their dog, or get to a gym, or AFFORD A MEMBERSHIP, or have you ever thought about the process of getting ready to swim and then getting ready to leave from swimming? Most changing rooms are hot and you’re sweaty and you can’t dry off and you can’t get your clothes on and now you’re dizzy and you might be sick! It really just goes on.

 

Most people, including doctors, do not think I am ‘overweight’ when they look at me. I carry my weight around my middle mostly so occasionally I jokingly call myself ‘skinny passing’.

 

Here’s a great experiment: Me, my mum, and my gran. Different heights, I’m 5’7, my mum 5’4, my gran 5’2. Carry our weight differently, mine is mostly my stomach and upper arms, my mum is mostly her bum and stomach, my gran is almost entirely her chest. Poor little woman with great old nunga-nungas. We are all very similar clothing sizes. My gran needed a size 18 to fit comfortably over her boobs. I’m roughly a 16/18 on top for broad shoulders and ribs and 14-16 on bottom for my skinny legs but wide waist. my mum is around 14-16 on bottom but she has issues with the waist being too loose or the calf area too tight. I moved into wearing more men’s clothes coz somehow a small will be tight fitting like a 14 in t-shirts but there’s not shame in wearing a men’s large or even extra large… because there’s no number. Men’s trousers are still a fucking mess if you ask me the waist size isn’t accurately in inches, I’ll tell you that for free.

IMG_3135

My fat friends don’t go to the doctor unless they really have to. They aren’t believed when they think something is seriously wrong, it’s all put down to weight. Skinny white women struggle to be listened to as it is in 2019. Imagine being anything else, poc, disabled, chronically ill, queer, trans, fat, no one listens to us and we have to learn to be a self advocate or bring a trusted person with us to help advocate when it’s too much. I have been spoken to like I’m a fucking idiot and been told how to wipe my own arse on more than one occasion by the same man (a surgeon btw, surgeons have zero social skills) as if I haven’t lived like this for a long time already. I am also belittled by other sick people who have had their disease longer than I have and tell me my case is mild when the last year of my life has been nothing but suffering.

img_7172.jpg

I’m just tired and angry at the able people out there making assumptions, and the doctors and nurses out there deciding they know what’s happening to my body before I finish telling them everything, and the other sick people who think they are better and more knowledgeable than me because they’ve had it longer or are older than I am. I’m angry for myself and I’m angry for my friends and I’m angry for my community.

I got enough to deal with, kindly, fuck off.

 

~ Artie.

Check out this video where I finally get rid of my ‘skinny’ clothes!

Check out this post by Zipporah Arielle on getting comfortable talking about Crohn’s as there are many ways body shaming can sneak into your life as a disabled person.