cfs-crohns-colitis-warrior

[cfs-crohns-colitis-warrior]

Huh?  Interesting.  Turns out you CAN’T cure your chronic illness(es), by convincing yourself you don’t have chronic illness(es)

[cfs-crohns-colitis-warrior]

I find it very offensive that the more unwell you are, the more things you have to do to maintain your health. Things like following special diets, going to medical appointments, making big and important decisions about what treatments to use. At the same time, the more unwell you are the less energy you have to do all of these extra things. It seems grossly unfair.

[cfs-crohns-colitis-warrior]

[cfs-crohns-colitis-warrior]

[cfs-crohns-colitis-warrior]

[cfs-crohns-colitis-warrior]

Ugh, the amount of times someone found out I cant work and that I’m home all the time telling me ‘it must be great not having to work!’

No. It’s fucking not. You don’t *have* to work (I mean, besides earning money to live, but even then you could just scrounge benefits), you *get* to work. I can’t work, but would love to. I’ve set up my own small business that I can do from home so I can feel useful again, and to try and being in money so I don’t have to rely on benefits cause now I can’t save for a damn house. I’m not earning anywhere near enough at the moment and need to work harder but I barely have the energy.

Like, sure, I now have plenty of time to watch all the tv I want and read all I want, and I’m lucky enough that my CFS isn’t so severe that I can’t stand to do that, but it’s not all fun and games.

I want to be able to spend one day a week doing all the cleaning so others don’t have to. I want to be able to get my own lunch every day. I want to be able to go for my daily walks and to shower instead of having a bath cause I just can’t trust myself to not fall over in the shower or I don’t have the energy to stand up for 10 minutes. I want to spend my weekends out and about, doing things with my boyfriend instead of always sitting home and watching tv (which is still nice, and luckily he’s the type of person to not want to go hiking every other day lol). I want to spend the other four days of the week working hard on my own business, earning enough money that it means we can have a two income household while I get to work from home. If I have to stay home all the time, this is way I want to be doing, but I can’t. It sucks.

"If you're tired all the time, why don't you just rest?"

Well Susan ideally I would be able to take as much rest and sleep as needed but not only does rest like not help at all there's also something called ✨societal expectations✨ that chronically ill and disabled people aren't exempt from because apparently our very existence is an 'excuse' to 'get out of doing work.'

[cfs-crohns-colitis-warrior]

My boyfriend reminding me not to do too much so I don’t wear myself out so much I can’t do anything for the next week.

[cfs-crohns-colitis-warrior]

I definitely agree, yet at the same time, as someone with so little energy that a typically five minute walk to a convenience store would take me more like 15 minutes and cost a lot of energy, it’s easier to drive to a store where I can park and not have to carry the bags back.

Saying that, I can drive to our smaller, local store which is just down the road and it’s fine, and if I do go to a bigger store I go with someone in case I have any issues with energy and need help or have to go round in my wheelchair. I’m in the UK, and our stores are actually not as big as this, so going around one isn’t anywhere near as tiring as it would be for me to go to Costco (which we do actually have).

Tbh, I’m mainly drawn to the bottom one because of the type of parking spaces they have, cause they’re so easy to get in and out of lol. If I had the energy I’d much rather walk to the local store for a few bits and bobs, and also go to other shop lined streets nearby for more specific stuff like a shop that just sells trinkety stuff, or one that just sells carpets (if I needed that).

I used to work in a tile shop, and they had only 2 stores, both within a 30 minute drive of each other. I’ve been to both locations to work. It was amazing to work for a small, local company, where you knew literally all of the staff and the owner and higher grade workers were incredibly kind and helpful. The amount of support they gave me, especially when I became seriously ill, was amazing. They even pooled together to buy me a personalised bracelet from the shop they knew I loved going to. No way would that have happened at a big chain store. My friend worked at TK Max at the time and was not allowed to keep even a bottle of water behind the till to stay hydrated, nor was she allowed enough breaks to go and get drinks to stay well hydrated. I no doubt would have been fired from a place like that when I was ill because of the amount of times I had to dash off to the loo for quite long periods of time.

This really got away from me, but my point is that convenience stores, overall, are definitely much better than big chain stores and undoubtedly will treat their staff a lot better (most of the time).

[cfs-crohns-colitis-warrior]

you shouldn’t give up on your dreams just because you’re working on them at a slower pace than other people are. don’t compare yourself to people who don’t go through what you do.

[cfs-crohns-colitis-warrior]

My controversial opinion is that I think chronically ill people should be able to fight one doctor a year

[cfs-crohns-colitis-warrior]

Question for anyone else with M.E or with a condition similar where INTENSE FATIGUE is experienced:

Do you guys ever struggle so hard to wake up in the mornings that it makes you wanna cry? I describe this to my loved ones as having to climb the tallest mountain, and in order to wake up I need to reach the very top of that mountain.

It takes me so long to wake up, I consciously want to be awake and there are moments my eyes flicker open and I'm conscious, I literally think "Okay, I'm getting there, must keep fighting to be awake" - but it takes me hours and several tries.

Sleep pulls me back in and I struggle to escape. It is horrible. I know to non chronically ill people, the idea of sleeping so much must sound nice. But it is horrible. I hate it. I hate being a slave to sleep. It's so scary. I literally feel sleep pulling me back in and I'm like no no no please let me wake up.

When my M.E was severe, I experienced this constantly, every single day. My M.E has become moderate/mild, I've experienced this less and less.. until this last week. It has been every day.. again.

[cfs-crohns-colitis-warrior]

[cfs-crohns-colitis-warrior]

Ask me anything!

A little about me: I have chronic illnesses. I have a stoma. I’ve had two surgeries. I’m self employed.

Some ask suggestions:

What illnesses do you have?

How long have you had your stoma?

How do you feel about having a stoma?

What do you do as a self employed person?

In case you want to ask something, but don’t know what. Also, the classics such as: what’s your favourite colour; what’s your favourite animal etc

Ask anything! You ask, I’ll answer!

I want somewhere where people will ask me stuff and I can answer them. I just feel like telling people about myself, and spreading info about my illnesses if I can. I get bored sometimes.

[cfs-crohns-colitis-warrior]

I’d love to post on IG more about my illness, partly cause I’d love to have a place where people can ask me stuff about it and about my stoma and I can reply. Unfortunately, I’d probably want a new account for that so it’s separate from my personal one (various reasons why, not least of which is I don’t want my brother responding with stupid, mean questions), and I already have 3 separate accounts that I’m trying to run. My personal page rarely gets stuff posted on it anymore, I mainly use it to like my business page posts in the hopes the interaction will get it shown more. My cats page rarely gets anything on it because I keep forgetting about it and it’s difficult getting content because whenever I start filming she stops the funny thing. My business page takes all my socials energy to make sure I remember to post and interact with others etc, because it is my only way of getting people to see my stuff, and the only way people can buy from me (aside from family and friends who text me). My business IG page is my only source of income aside from my benefits, which I would really like to not need anymore so I can actually save money.

Anyway, long story short to get to the point of this post:

I’d like to answer questions on here. If you have a question for me, about who I am, what my illnesses are, how I deal with them etc, please send me some asks!

[cfs-crohns-colitis-warrior]

If anyone could answer this poll for my business side blog on here, it would be much appreciated!

[cfs-crohns-colitis-warrior]

I feel like this was shared on the ME Association Instagram page 🤔

Either way, great image and so true!

From @colourblind_zebra

'Small' tasks that can be really hard when you're chronically ill

[cfs-crohns-colitis-warrior]

Posture for sure! I wish I had much better posture but it’s not until having me and now trying to improve that I realise how much energy it takes!

If I could for some somewhere and they want to sit me anywhere but an actual chair, a booth bench at a stretch (if there’s a choice of the two I always opt for the chair) then there is no other way I will be sat other than half lying on the table because it’s too exhausting or having anything to lean on.