How I’ve Been Passing My Time

Hey pals,

If you’re a regular to my social media, then you know that I am chronically ill and disabled which has lead to many, many months spent inside my own home, sometimes bedbound. I have a lot of isolation practice, except now my family are all home too to shield me, because I come under High Risk.

I can’t lie, I have moments of getting bored and I definitely miss my Costa or Starbucks iced coffees and a good take away, but generally I’m pretty used to this. Seeing all the able-bodied people struggling with spending time inside/at home kind of gave me a boost of energy and motivation because ‘haha! I am the highly functioning one now!’ and kinda just wanted to shove it in people’s faces that I’m doing stuff and filling my time! I even started exercising… daily. Who am I? At this point, I couldn’t really tell you just like I couldn’t really guess what day it is.

I have always been a bit of a loner, I enjoy my own space and I enjoy being alone. I was an only child so that probably helped. But I’ve always been a creative whether it was playing imaginary games with toys, making art, writing stories, singing My Little Mermaid songs, or watching television. I couldn’t read for a long time so I missed out on a lot of books that were turned into shows or films, and actually I’m starting to make up for that. I’ve become quite the reader over time (Yeah I should be after getting my Bachelors in Creative Writing…) and I have a large collection of physical books. One big job I did was to go through all of my read books and decide if I still wanted to keep them or not and I think I halved my collection. I still have a lot of unread books I need to at least TRY to read so that will be keeping me busy as well. I’ve recently found a love of ebooks where I find really cheap ebook versions of books I sort-of-kind-of wanted to read but not enough to splash out on a hard copy and postage. So the ebooks don’t take up physical space and they can be so much cheaper than physical copies, this benefitted me when it came to books I wasn’t sure I would care about, so I buy the ebook, give it a read, and if I really liked it I can buy myself the physical copy at a later date. Plus, it’s easier to read in bed on your phone, and it’s less work for my disabled hands to hold a phone than try to keep open a book! Some of these books are going to be great video and blog content in the future too (I Read the book and Watched the Film: Princess Diaries edition anyone?).

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We’ve had to get creative by baking. I have a really specific diet that makes it hard to shop anyway, but it’s even harder now when the shelves are empty and you’re limited to what you can buy online. So, for fun and delicious treats (for my MASSIVE sweet tooth) we have been experimenting with baking different things. We became the banana loaf cliche (but it’s so delicious… I’ve made FIVE) brownies twice but they weren’t gooey enough so we need to have another go! Crumble, and shortbread. But I’ve got a little list of things to try making for fun and see if I like them and it’s nice cooking with my mum… coz I can’t do it alone. I love being disabled, I can’t even stir the batter.

I’ve been re-organising and decluttering many areas but am far from done. I’m due a clothes re-organise coz I need to swap my winter stuff out and summer stuff in. I put my millions of hospital and doctors’ letters away in my filing box, each under different sections. Also watching DVDs I’ve not touched in a while and completing old games I’ve had for… maybe a decade so I can get rid of those too! But I’ve also been making art! Blackout poetry with some of the books I didn’t like, finishing old works and painting the backgrounds, collaging in my notebooks… I’m tired, the list probably goes on but those are the main gals.

I even figured out my streaming issues on my computer and started dabbling with the Sims 4 again, but there’s a massive bug at the moment making the game impossible to play so… it’s either decorating or not playing at all.

I’ve filmed so many book videos… I’m not a booktuber, I’m a dabbling booktuber but now… my channel is full of books! I’m reading and editing things my friend has written (for her uni course and… her hobby of just writing to maintain sane.) I’ve gone back to my BSL (British Sign Language) course and actually progressing a little… I know how to say ‘sorry, I don’t understand’ and ‘I missed that’. I think there may have been a point where I actually wrote something for my WIP… but that must have been in the early days because I can’t remember a thing. (If you want to learn something, give Skillshare a try)

IMG_7506I keep a daily diary of things I do/things I have accomplished so that I don’t lose the plot and feel like a failure and haven’t done anything. It’s for all things, big and small and some days are shorter because I decided I was going to spend time relaxing either in the sun or watching mindless television/YouTube because we still need to let ourselves rest during this time. Actually, writing this post has ticked something off a massive list of things to do I have. TICK. I’ve made a very long list of things I can/should do for the days I feel restless but can’t THINK of what to do. It’s pretty useful. I’ve been writing in my journal under the writing prompts I found. Practicing mental health care is really important during this time I’m even seeing a counsellor right now but we chat over the phone or video chat. If you need some help, I recommend reaching out and seeing if it’s possible. I’m sure lots of therapists and counsellors still need money to pay for things too.

I’ve already watched almost everything worth watching for me on Netflix but I’m sure most of you lot haven’t so just binge watch a show or film series! I have so many recommendation posts for things to watch, support me by clicking them and give yourself something to do! Want something Spooky? Give this list a try. 

If you want to see what my isolation diary actually looks like, let me know and maybe one week I’ll post some of my diary (coz as I’m writing this I’m on day 30 but this will probably not be out for at least 2 weeks…).

~ Artie

Please check out my YouTube, I’ve been working really hard on content there!

And check out two recent blog collaborations I did! Disabled Writer Tips and Being Disabled during the Pandemic.

Why I Haven’t Self Isolated Yet.

Hey pals,

 

There has been a huge mix of information of who should and should not be isolating, and most countries have jumped to action a lot quicker than the U.K. though I know people are supposed to start isolation today and over the weekend, particularly the vulnerable and over 70’s. But here’s why I haven’t fully isolated myself yet.

 

This week and some of next, I’ve had some really important doctors appointments at hospital that I’ve already been waiting months for. One was a discussion about medication for Crohn’s that was overdue, the second was a chat with a colorectal surgeon to check how my surgery site was doing and this was also overdue, and Thursday I had an imaging appointment to finally get my right arm scanned with ultrasound to find the reason I’m always in pain. Then next week I might be seeing my IBD Consultant who I have never met, and then a dietician but this one I might be able to move to a phone appointment.

 

All of these have been in the works or postponed by bad communication within the department and all super important to my health. I’ll be starting a new medication soon at home for my Crohn’s now I’ve met with everyone and they’ve all agreed it’s the best next step. We have finally found out what’s happening with my arm, all I will discuss in due course as I am awaiting the official letter that explains everything, but what I can say is it is a genetic thing and rare… typical me. And hopefully the dietician can help me work with my dietary restrictions to start leading a healthier life with food.

 

My experience going to these appointments has been pretty different to the usual. Most of the elderly staff who do the carting around of medical files and weight and do your blood pressure were not there, the number of patients lingering had dropped drastically, everyone was on time, there is really a low risk of contamination. Luckily the antibac dispensers still had gel in them, whereas I’ve seen London hospital shave been ravaged. Even the hospital car parks are half empty when it’s normally so difficult to find a space.

 

Now I will say, before anyone gets to heated about me going outside, I have taken precautions. I’ve avoided people or contact for the most part, washed my hands or used hand sanitizer, I have avoided touching doors or buttons, and kept my timing outside to a minimum.

 

It’s near impossible for everyone to stay inside, but as long as you are doing what you can to avoid contamination or possibly spreading the virus, and staying isolated if you have a suspected case! We are doing what we can.

 

I hope you are all safe and well.

~ Artie

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Three Crystals I Took With Me For Surgery !

Hey pals!

I don’t often talk about my spiritual side on here, only on the odd occasion like this blog post! But I’ve not had any kind of surgery since I was 2 years old and I had my tonsils removed! So I had a lot of anxiety going in for this (also a lot of waiting around that holding on and fiddling with something helps) and was prepared to dip back into my spiritual side. I asked some of my online friends for suggestions and these were the three I decided on!

Rose Quartz

The properties of this stone are: peace, healing, calming, reassuring.

It speaks directly to the heart chakra helping to dissolve emotional wounds and fears, I have a lot of medical trauma to do with needles so this was important for me to help reduce my fear. It’s a good crystal to use in emotional crisis.

Jade

The properties: protection, harmony, good luck.

This stone prevents harm from coming to it’s beholder, again perfect for surgery as I was worried about things going wrong. I am also always in need of good luck. It helps sooth the mind and release negative thoughts.

Blood Stone

The properties: blood cleansing, general cleansing, powerful healing, protection,

This is also a stone for healing, protection and calming. It also helps in adjusting to unforeseen circumstances, as we weren’t aware I needed surgery until the last minute and weren’t sure if or when it would happen. And it helps with irritability, aggressiveness and impatience, all of which I needed as I have mood instability and was also sat waiting for hours multiple times. It’s also ideal for anaemia (which I have mildly thanks to Crohn’s) and supports blood flow and circulation. Apparently also reduces the formation of puss (very specific but always helpful after a surgery!) and helps to heal inflammation and infections.

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This post in no way is telling you to use holistic approaches INSTEAD OF scientifically proved medicine. This is a post on how it can be used as an emotional and mental aid through some tough times. I am an advocate for seeking out professional help rather than alternative therapies, but I see no harm in doing both.

~ Artie

 

Other Crohn’s related content can be found here: Disability and Chronic Illness Videos

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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