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

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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.

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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.

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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.

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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

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I’m 25 Today / Happy Birthday To Me

Hey pals,

A lot of my YouTube content recently has been about my birthday. Things I’ve done and feelings I’ve felt… I didn’t really know what I wanted to post here on my birthday. I wanted to have a positive post gushing about my holiday to Milan but honestly it wasn’t that great. I’ll talk about that some other time.

I’m typing this on my way to see one of my best friends in London. She has been a bit of a birthday saviour this year. I was supposed to have a different friend come down to visit me, who promised me all kinds of things I was reluctant to believe… just more proof that my gut instincts are normally right. And I made a small Facebook event for the locals to come to the pub with me tonight… one was a definite no, no one else even replied. I did message one of them (the other best friend) directly and we are going to go to the pub this evening when I return from London, the others may appear but if they don’t at least I’ve seen my two best friends today.

The time around my birthday is always kinda shitty, this year I had a lot of health problems as usual. Coming off steroids a few weeks ago and having a lot of pain in my stomach but also other parts of my body come back… numerous health professionals giving me phone calls about my blood inflammation levels creeping back up again… my stool sample showing such high inflammation in my bowel that they can’t even give a specific number… just over 600 when the average is 50 or under.

Going to Italy and not being able to eat much and mostly living off bread and balsamic vinegar… maybe some pasta with sauce. Lots of walking because none of the vegan restaurants were near the bus stops, not finding a single cafe that would give me a decent sized coffee with soy milk and going out of my way to get to a Starbucks and it being on of the big ones with merchandise and a canteen? With fucking bodyguards outside ?? Mad. I just wanted a coffee… also being given cows milk before we had even taken off from Gatwick which was FAB. And having reached one year smoke free, Italy isn’t ideal because literally every other person you see is smoking a cigarette or a cigar.

And I can’t forget that my birthday is usually a day I get to gorge on all the sweet foods I love but sadly they all feature dairy so this is a dairy free birthday to prevent an ass explosion.

25 feels weird. It feels adult. And I definitely don’t feel adult. Some of my friends are married with children others are doing their masters. I am bobbing along, not really knowing what I want to do with myself an very far away from having any children (not that I want any right now anyway??) and just continually being unwell.

The one thing I wish for, for my birthday, is that my health reaches a state of remission so that I can function better and live my life a bit more. I want to go travelling this year.

And now I’m ending this post having gotten a little tipsy with one friend, on the train home to see some pals for more drinks in a pub… and I’m not as salty as I normally am around my birthday. ‘As I get older’ everyone says, I realise all I want is to spend time with friends.

See you next week

~ Artie

What The F*ck is ‘Erythema Nodosum’?

erythema nodosum

Hey pals,

I’ve been having another one of Those Times TM with my health. Basically, on the 15th of July, I started getting red bumps on my legs that looked like bites, and I gained about 10 or so every day for the next 5 days, mostly on my lower legs but also some around elbows and wrists. Weird thing was, they weren’t itchy like they usually are but I didn’t really notice that… it was on the 17th when I started getting the absolute worst pain I’ve ever had in my legs. It would come up the top of my foot, the outside ankles and outside of the calf muscles or up the shin. I rated this an 8 out of 10 on the pain scale commonly used within the NHS, and I have chronic pain. It’s often thought that people with chronic pain have a warped sense of pain after living with it constantly, so if that’s an 8 to me? Would it be a 10 to someone else??

I mentioned this pain to my podiatrist (who I conveniently had a phone appointment with that afternoon) but he didn’t seem too fussed. Was this an extreme allergic reaction to the number of bites I had? So I started frantically Googling, which people aren’t supposed to do but here me out… being chronically ill and disabled, I do need to google new symptoms in case it’s related to medication (either just a normal side effect or an allergy), something related to my current illnesses, or if it’s something entirely new. I couldn’t find anything that fit… at all. I would have some symptoms but not others.

Gout, tendonitis, diabetes, rubella, measles, mumps, chicken pox, co-codamol overdose, bug bite allergy… anything I could think of. As the week went on the pain got worse and harder to control with the medication I had. None of my painkillers touched the pain for more that 2 hours at its worst.

I went to my chiropractor on the 18th. He didn’t know either, and by this point I thought it was bed bites and we swapped my mattress out for a new one after trying to exterminate anything that might be there. Then the pain was back again and I had to cancel an event I was really excited to go to. I couldn’t walk with this pain and definitely not to and around London.

We couldn’t get a doctor’s appointment at all this week so I had to put up with it. I also had to cancel seeing a friend on the 20th because the pain kept coming back regardless of rest or no rest… The lumps also started to go a bit purple like a bruise. My bites do bruise so I still didn’t think anything much of a connection between the bumps and my pain. Standing and Walking would bring a different pain, like sharp needles and tight skin, and my knees were really weak and I would keep knocking them back and hurting myself.

Saturday evening was the worst for my legs. I was genuinely screaming and crying. I make a lot of weird noises when I’m in pain but I don’t normally scream. I ended up taking all my painkillers in one go around 11pm and slowly passing out.

Rinse and repeat for another few days until I saw my GP on Tuesday 23rd July. I start telling him about it all and he started asking me questions related to symptoms, now, clever me in a pain induced state had written up all my symptoms I’d been having in case they were all connected.

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He said the lumps look like erythema nodosum. This is often linked to an infection or a reaction to new medication (he said) and guess who had just gotten to three weeks on Mercaptopurine for Crohn’s? You got it, hun. So he added some extra tests to the bloods I’d just had taken and sent me for a chest x-ray, so off I went for the x-ray at the hospital. Short version, I waited over an hour coz it was hella packed and eventually found out later they were clear. Then went to have a massage.

My GP had written down erythema nodosum because I am too dyslexic to even try to spell it, he also said it doesn’t sound how it’s spelt thanks to the fun Latin or Greek derivatives of medical language. So, I had a Google by doctor’s advice.

Erythema nodosum is basically swollen fat under the skin that causes red bumps (ew) but it usually goes away around the two week mark. It can be a sign of something serious. It usually affects the lower legs (check) but can spread to other parts of the body, (check, elbows and wrists), the bumps can feel hard and warm and painful. You can also have flu-like symptoms! High temp of 38* or above (I don’t think mine ever got quite that high but it was close), tiredness, joint and muscle pain. The tips to help ease the pain weren’t super helpful because they were pretty obvious: take painkillers, particularly ibuprofen (I can’t take that because of Crohn’s…), rest with feet raised (done), apply cool wet compress (we were using ice packs and hot water bottles before wet cloths)… and that was it?

Common causes? As usual, no one really knows.

I got a call from my GP at around 7pm telling me the results of my bloods were back and very worrying. My inflammation markers were over 200 (the highest I’d had before was 94) so I had to be checked for infection. The hospital staff were kind enough to test the previous sample from earlier in the day instead of making me have another blood test and found I did not have any infections (WOO) but they believed it was linked to my Crohn’s not my medication or anything else. They think it’s a Crohn’s flare! Whilst I was in hospital, it was explained to me that it’s actually quite rare to see erythema nodosum and the doctor I had, said she had only ever seen it once before.

I had to come back in the morning to see the Gastro team of the hospital. She also wanted bloods, but again were nice enough to just go by the ones from yesterday. She wanted me to go on IV steroids for a couple of days and stay in hospital. This really shocked me because I really did feel fine except for my legs! I didn’t feel like I was having a stomach flare at all, everything was working normally. I went through my history with her and all my medication. She brought in a rheumatologist, because Crohn’s and joint pain/problems are often linked and he wants lots of scans and some bloods to be done. The Gastro lady ended up okay-ing me for pill steroids and to go home because I did seem well and that I would probably be less stressed at home. She wants our local hospital to take over my care and start from the beginning with my illness and what that means for me, because my previous care clearly hadn’t gone into any detail with me.

Now I’m writing this two days later, two days on steroids and feel much better. All this could have been avoided/quicker to deal with if I’d been properly informed about my disease and the possibilities of other things happening to my body. That’s why I’m writing this post, to show off this weird reaction that isn’t super common, but is far more common for people with IBDs. I want to be the blog post I needed when I was frantically Googling for my life, thinking I had a blood clot and that I would die. It’ll be okay, I know it’s the worst pain ever and you can’t continue normal life right now, but once you get the right medication and care, it’ll get better and it will go away. But it was really scary going through this and very emotional. I hope this can help someone out there, or just better inform some people about IBDs.

EDIT: I’m writing this roughly a year after this happened to me. I wanted to share that thankfully I have not experienced this since last year, I have also read it is possible to get Erythema Nodosum with types of Vasculitis (of which I have one type, but my rheumatologist says it’s unlikely it was linked to my vasculitis and was most likely my Crohn’s). I have also pretty successfully completely gotten rid of the dark discoloured marks on my legs, there’s super minimal evidence of it on my body and this was mostly due to using a mixture of caster oil and lavender oil on them, it is meant to have lightening properties so I also use it on dark patches from healing spots too. I was told i would never get rid of the marks so shove it! I just wanted to give an update to this post for anyone who finds this and is wondering what happened!

~ Artie

Check out the more detailed video of what happened to me during this time!

Also check out these two videos about my colonoscopy!

You can watch the video here if that’s more your thing of you want to hear more about it.

I have numerous other videos about my health conditions you can find them all in this playlist, please check it out and share.

Feel free to leave questions!