Why Is Life So Hard When Chronically Ill And Disabled?

Every day is such a battle. A battle with health, money and just life.

I wake up at 11am with my alarm otherwise I would sleep all day due to chronic fatigue plus the opioids and amitriptyline! I struggle to get up and feel like I haven’t slept even though I have had 11 hours. The pain and stiffness from chronic pain make it so hard to get up and every movement is painful and exhausting.
I sit downstairs and with a combination of laying in bed and sitting downstairs, that is my day until 9.30pm when I go to bed to relax before going to sleep. Two small weighed meals a day totalling 55p roughly consisting of a meal of value cereal/oats and UHT milk and a warm small dinner consisting of some frozen protein such as chicken and value rice. Those are my only two meals.

This is my life. This is it!
I just can’t do much more as I don’t have the health.
I see the same 4 walls every day.
I can’t go out, can’t sit in the garden, can’t go into town, I can’t do a thing!

I don’t have a powerchair which I desperately need, but I don’t have the money. I can’t use a wheelchair so it has to be a powerchair. I would love to raise the money for one and would love to crowdfund, but I had to crowdfund my medication which I need more than anything as my pain is so extreme that I can’t live with it at a 10 out of 10 as it leaves me bedbound with the worst pain in the world, screaming night and day! That is why I am using the medical cannabis as there is nothing on the NHS for me as I tried literally everything, including the strongest painkiller in the UK, plus cannabis helps a lot, I just can’t afford it without help as it isn’t on the NHS.

I would rather crowdfund a powerchair so I can go out, but the pain is so much that it has to take priority.
I assume when I get to crowdfund the powerchair, people won’t want to help as they will think I just crowdfund everything, which I don’t at all, but I had no choice with the medication as I can’t work and have no relatives, plus my £300 a month income doesn’t cover living costs, let alone £206 in medication bills every month! The pain is just so extreme that I had to ask for help.
The cannabis helps, but I can’t afford to keep using it and I run out of crowdfund money in a few days, at the end of October 2021. You can read about my crowdfund or donate on JustGiving which had lots of information and also photos of invoices for proof of cost.

It is just so hard and people don’t understand what it is like!

People assume you are just moaning all the time as you are negative, not at all!
I am very much a realist and I take each day as it comes and I have realistic expectations about things. I have a lot of bad luck/am incredibly cursed as you probably read on Twitter and a lot of things I need but can’t afford or can’t get.
You try living on £300 a month before bills, food and essential medication totalling £206 a month! Doesn’t quite work out does it?
I can’t get any more money and I can’t work but desperately need more money so no I can’t say I am very positive when every day is a battle!
I post my crowdfund, Amazon wish list and donations links not because I want to, but because I have no choice as I desperately need help.
I feel absolutely horrible, embarrassed, ashamed every time I post a link to my crowdfund or donation links. I hate it, but if I didn’t, I wouldn’t have had the cannabis for the pain for these months. I don’t get regular donations, but I did raise some crowdfund money on JustGiving which is purely for the medical cannabis, and I run out in a few days.
I don’t post the links often as I am just that embarrassed and ashamed about it!

When you can’t do anything at all to earn money and say that, strangers on the internet often like to attack you for that as they don’t understand how you can’t be able to do anything as they haven’t got a clue what extreme chronic pain and severe chronic fatigue is like!
I recently blogged about trolls and how nasty some can be, because I sadly come across so many on social media. So many just don’t understand, so they attack instead.
I also get the ones from some disabled people who assume as they can work and are disabled, that you can. That isn’t how it works! Some disabled people can work work 40 hours a week and go out on a weekend. Why? Because everyone is different! Some disabled might have a wheelchair, but don’t have pain or fatigue so can work still. Disabled doesn’t mean all the same!
I am chronically ill with multiple chronic illnesses and health issues and also disabled due to the severity.

I can’t work, I can’t do anything that could earn me money as I can’t move an inch without pain and fatigue.
I can’t type long, speak long, can’t stand more than a few mins, can’t walk far, can’t write for more than a few lines, can’t read a book, there is so much I can’t do.
Obviously I can push myself with typing and I can force myself to type a little bit more, and I have to sometimes, for example if a troll on Twitter attacks me, I feel like I have to try to defend myself so I reply and push myself to type but it really has a massive effect on my pain and fatigue!
The pain gets worse and worse and I start feeling weak and shaky and the pain gets worse. Then I feel a coldness running through me which is me close to passing out from the fatigue and the pain. So I don’t push myself as I pay for it for many days as it takes a long time to recover if I do push myself.

I can’t do anything that involves my hands, speaking, reading for long or moving. So yes that involves pretty much everything, but the pain and fatigue are just that extreme! That is why I started my blog so I can share what it is like for me and raise awareness for chronic illnesses and disabilities.

As I have mentioned before, I have tried streaming from my chair with a laptop and a controller for accessibility reasons, and it was like torture to do! Even just an 30 minutes is so difficult, painful and exhausting, even though I am sat in the same chair as I do everyday, but the controller and the talking adds massively to the pain and fatigue.
At the end of the stream I would rush to bed so I don’t pass out from the pain and fatigue. I would need 3 days to recover from a stream now as my health just gets worse and it is just that hard for me!
I would lay in bed in tears from the pain from one stream.
All for nothing as even though I grew in followers, people didn’t drop by no matter what I did. I don’t have the health to promote and do the things you need to do to be able to grow on Twitch.
A lot get lucky when they get raids or shout-outs from other bigger streamers. I am lucky to get 1 retweet.

Plus my computer broke not long ago, so I haven’t streamed for quite a while, but I never earn more than about $5 a month which you don’t get until you hit $100, plus as I am in the UK, then there are currency conversion, Twitch fees and PayPal fees on top, so I haven’t ever had a withdrawal from Twitch!
It kills me to stream and I don’t earn from it! Even just once or twice a week for just a short while is too much and kills me, but I try to think that I might earn money one day for food, medication etc, but that day never came.
I torture myself for nothing as that is how it feels as it is just so hard.
But alas, yes I haven’t streamed for a while as my computer broke plus my health is even worse now.
I will try again soon but I never get anywhere with it.

Getting by is very difficult and it gets worse as the weeks and months pass. What I could even just last year, I can’t do now. Chronic illnesses are the worst.

I just wish it wasn’t this hard getting by. I wish I could get the benefits I should be on so I could live a more normal life and get the power chair and medication I need without worry.
Instead every day is a battle with health and money.

If you do wish to help, I have a JustGiving page for my medication crowdfund and a support me page where you can see other ways to support me if you would like to help. Thank you so much if you do, it really will help me so very much!

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