Hi, I Want To Share Stuff About My Life With Chronic Migraine And Other Health Struggles. I'm Still In

different than what I usually post but I'm mentally so so tired and in a ranting mood lol

able bodied people doing things that aren't ideal for their health is so normalized, but when disabled people do it it's wrong or worse somehow?? are disabled people not allowed to be human sometimes??? "isn't that bad for XYZ?" "didn't you say you shouldn't XYZ?" "i thought people with XYZ shouldn't-" I'M AWARE!! I DID NOT ASK!! im not a toddler that you have to remind to eat their veggies or not to stand too close to the tv, im a grown ass adult. ive been living with my disability and chronic illnesses as long as i can remember. sometimes i don't wear my braces when i should, or drink more alcohol than i should, or have caffeine, or do things that I KNOW could trigger flares or seizure or some other issue my body feels like being a bitch about. im fucking human. im allowed to do things that make me happy even if it's not the best for me, just like anyone else. let me live, christ.

Sometimes, I still feel so able bodied.

Like the aches and pains are quiet for just a moment long enough for me to remember what freedom I used to have. It's almost like if I yearn for it hard enough, I can have the old me back. The me that could still achieve all my dreams. The me that had no idea what was coming and how much it would all cost me.

Somedays, I still feel the urge to live the way I could before. Carefree and boundless. God, I can almost taste it.

I've been worried ever since I was born

I won't lie gang... this past month I have gone from using a cane to get around outside to only using my wheelchair- propelled by someone else- to get from my bedroom to the bathroom. needless to say my condition is progressing at a really steady rate and things are getting scary. I am unable to make myself food or even hold my phone and type for too long. However as this is all so new and happening over the christmas/new year period I am not getting adequate assistanc or healthcare as I still need to APPLY FOR ASSISTANCE to help me APPLY FOR ASSISTANCE which could overall take 6+ months. Despite people pushing me to remain hopefull, I can really only see myself getting worse from here. My resilience can only keep me awake for so long. What I really want to ask, specifically the me/cfs community but the wider chronic illness community too, is for help arranging a sort of "living will" for however long I'll be alive but not able to do very much. my will for what happens to the life that I used to have before it all got worse - and how I would like to be taken care of. Are there any templates out there that I can send to my carers? If not that, some advice or words of support anybody can give?

Disabled people are not obligated to do everything that a non-disabled person can do. Stop treating us as though our bodies are the same. What you do normally can be detrimental and dangerous to us.

yknow what i hate so much? when i technically Could do something that requires more spoons like reading or watching something that im not familiar with, but i know i Should give my brain a rest and read or watch the most mind-numbingly familiar and low spoons things i can find instead

Please stop trigger tagging with #epilepsy tw/cw/warning/etc.

I need every single person to understand how horrible tumblr’s tagging system is

I go into the tag for epilepsy and its all flashing lights. We can’t use our own tag because people without epilepsy fill it up with improper warnings.

Use ‘flashing’ in place of ‘epilepsy’ in your tags. You aren’t warning people of epileptics, you’re warning us of flashing lights. Please please tag properly. Epileptics say this endlessly and constantly and it’s ignored. You are risking lives by doing this.

Here’s proof of what I mean:

THIS POST IS 100% OKAY TO REBLOG, I ENCOURAGE PEOPLE WITHOUT EPILEPSY TO ESPECIALLY DO SO!

New favourite thing to do is to remind people of how much they hated lockdown when they say they wish they could stay home as much as I do.

Like no you dont you were miserable when you were forced to stay home all day everyday for the good of your health. Thats my entire existence as a disabled person so pack it in.

who up experiencing emotions they can talk to no one about

I was outside today! For the first time in weeks except medical appointments. Went for a very short walk. It was great, but i'll probably have to pay for it and also i'm more sad now than i was before. The distance between where im at and where i would like to be is just too big.