Disabled/chronically Ill People In General Do Not Have The Same Number Of Usable Hours As Ableds. I Can't

disabled/chronically ill people in general do not have the same number of usable hours as ableds. i can't meet my friend tomorrow because i need to wash my hair, and i can't meet them the day after because i need to do a load of laundry. i can't meet them thursday because i have an important appointment on friday, and if i overdo it on thursday i'll have to cancel friday's appointment. then i can't meet them on saturday because i'll be recovering from going out on friday, if i even manage to make it out the house. the old 'we all have the same 24 hours in the day' saying does not apply to us.

How the fuck am I supposed to explain chronic fatigue to someone??? Like I need at least one nap a day to even kind of function in addition to going to sleep earlier than most people might. I am constantly exhausted, I wake up exhausted and I end the day absolutely drained and then I’m expected to do it all again the next day. How the fuck do I explain that sometimes even doing nothing is exhausting? How do I explain that I can’t do things sometimes because I’m so far past tired that I’m essentially not functioning? How do I explain to someone who says they get exhausted but can still function when they’re at that point that my exhausted is completely and utterly different?

I hate that out of fucking nowhere I just get sick and nauseous. Like wtf is this shit??? I didn’t do anything????

I finally got my custom knee braces!!!! I’m so fucking happy I just wish it didn’t take this long to get it authorized. I’m so lucky too that my insurance covered them because otherwise they’d be ridiculously expensive. They were 3D printed to match my legs so they fit so perfectly. Getting used to them is hard because they make my leg muscles have to actually work rather than just going along for the ride and my joints don’t hurt as fast during the day. Walking is so much better now. I’m so fucking happy omg. I’m so thankful to my sports medicine doctor who wrote the letter that was hugely responsible for getting my insurance to approve them.

Now I need custom fit braces because of the significant size discrepancy between my thighs and my calves. Every pre fabricated brace I have tried or wanted to try didn’t fit me in so many ways. Either they didn’t go big enough to fit my thighs or they fit my thighs but were too big for my calves or they wouldn’t sit right on my knees or so much else. But I finally have amazing braces that fit perfectly and actually stay on my legs and for that I am so thankful.

These braces have made such a big difference in how active I’m able to be and how I’m able to do physical therapy. With these braces I can actually get my knees and legs closer to where they need to be without the same kind of pain and instability that I have without them.

Now I’m working on getting a disabled parking placard because while walking is easier it’s still hard because of my joints and fatigue and also because of my POTS and just everything else that’s wrong in my body. So I have an appointment with my gp to work on the paperwork and then I’ll go from there to apply. I’m so happy that I’m finally able to get even just some of the help I need and for that I am so grateful.

Okay so I’m heading back to school after spring break and my trip was AMAZING like seriously I loved it but wow I’m in so much pain now from everything we did. I had rest time and most days were laid back but damn even still. I made the mistake of bringing neither my crutches nor my braces with me because I thought they’d be a nuisance rather than helpful but I have definitely come to realize that any potential level of nuisance-ery is far less than the helpfullness of them. I hopefully won’t make that mistake again.

On another note screw the stairs you have to take up to a plane sometimes. Those are so wobbly and steep and long. And oh my my knees wanted to CRY.