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!

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!

Migraines SUCK & How I Cope

Hey pals,

If you follow me elsewhere, you already know that I’ve been suffering with pretty intense migraines on and off for at least a month now. It started with chronic headaches that went away with seeing a chiropractor and starting amitriptyline (a very small dose) before bed to help me sleep and also tackle pain. Then not long ago I had my first aura migraine which was pretty scary. My vision was blocked by flashy white lights that are similar to looking into a bright light or the sun and the impression that leaves, and the left eye gradually got worse along with a lot of the usual headache pain… This sight disturbance really concerned me because my Gran had a torn retina a few years ago and our opticians have advised us that the flashing light kind of wigglies are the dangerous ones and can mean there’s something wrong with your retina! I had to calm my shit down and wait it out. I also called my GP practice and the secretary told me I should come to the doctors… but I couldn’t move or see so I pushed to have a doctor call me back.

So in the end, I had to change my contraceptive pill (because being on the combined pill when you have aura migraines means you are at risk of strokes) and I hoped that would be it and everything would be better, but no.

I kept getting headaches but the location of the pain changed. It used to be in my eye sockets and temples but it moved to more of a gripping pain at the sides of my head and really awful pulsing sensation if I moved. Sensitivity to light remained the same so I often sat inside with all the curtains closed and sometimes even sunglasses on.

I tried my co-codamol (paracetamol and codeine combined medication), i tried ice packs, I tried wetting parts of my head or hair with cold water, i tried the soothing head balms that used to work before… nothing made any difference coz as soon as I moved, it would start pounding again. it was stopping me from doing pretty much anything. (I’m actually writing this right now with a migraine coming on because I just can’t take it anymore!) And because I have an IBD I can’t take anti-inflammatory meds for migraines or headaches because it messes up my Crohn’s, and those used to be the only meds that worked!

I went to my GP and he basically confirmed it as migraines. Something he told me was really important that I hadn’t seen anywhere on the internet, “it’s less about where the pain is, and more about how painful it is,” I’d told him migraines were at like an 8 for me and as someone living with chronic pain, me saying something hurts like and 8 is a big fucking deal. He gave me a new med (which I still haven’t tried yet as I like to try and use simple methods first whilst they work) and also suggested I take a double dose of amitriptyline sometimes if I feel like I need to. During my extensive research of ‘HOW STOP MIGRAINE PLZ’ I saw that actually if you take too many painkillers, this could be part the problem and hun I’m on quite a few, so I switched my co-codamol to just paracetamol for when I’m having a migraine, and annoyingly it has been working. Sometimes, simple is best. I also read that you should try drinking caffeine? This one surprised me because it’s often advised against, or I would assume you should drink some if you are in withdrawal and that’s the source of your headache… I love my caffeine, but I don’t drink thank much of it, so I knew I wasn’t in withdrawal, but I gave it a try and it has helped in some cases. I read, “Before a headache or migraine, blood vessels tend to enlarge, but caffeine has “vasoconstrictive” properties that cause the blood vessels to narrow and restrict blood flow, which can aid in head pain relief.” which I found really interesting. So, now if my migraines are hanging around, sometimes I’ll make myself a cup of coffee (sometimes iced since it’s so hot atm) and just relax for a moment.

Migraines suck and make me intolerant and intolerable, and I’m sure many people are the same (I had a conversation about having migraines with a close friend of mine recently who I know has had migraines for the better part of 10 years!! Yikes) and I never fully understood how sucky they are and how debilitating it is to have migraines! I know most people end up in a darkened room with a cool compress or wet flannel and probably go for a nap… but it’s something I’ve hardly heard being talked about coz people go ‘oh just take this and get on with it’, but most things don’t work for everyone. I was just feeling like a cry baby today and wanted to share this part of my struggle coz my life right now is ALL struggle but this is something easier to talk about than the rest. Hopefully what I say is helpful.

I’m gonna go have a cup of coffee and maybe close my eyes.

~Artie