What have I done today? Mostly typed this slowly but surely, mostly from inside my tub. Yes there was a reason and me tell you in a minute. But 1st me wants to say why am typing at all. Because this is 1 them times me am to overwhelmed to knows what am feeling and thinking so typing helps me focus from the racing in mine head. But also because me wants support but not to bother nobody because it’s not an emergency and mostly me prolly needs be or get used to this.
Anyway the reason me was typing in tub was because was stuck. Worse than stuck, me fall not 1 but 2 times off the safety seat, maybe not so safety seat. Maybe this was my mine fault but even then me wants rant and be upset. Why? Because it should not happen. Me not do anything crazy. All me did was shave and brush mine teeth. Now sometimes me ask Grr or Cheetos to shave but them is working and me was itchy so me do it. It was bleed after but no more itch. And then me remember not brush mine teeth today so did that to. That’s it. Then me got in the tub. Me took mine time not that me has much choice anyway. But me guess was just to much ask mine arms do all mine hygiene. After all this I’m prolly not getting off the bed for tonight.
These things is horrid. Part of me is super proud of how well me do. But part of me is so much upset of the struggles me go thru and how much slow the state is to help me. It’s scary. Falling in the bath is able to get hurt, but me can use bath wipes when not can get in the tub. But what more scary is than me can barely eat or drink or take meds. Almost everyday me choke on something even if it’s just air or saliva. It takes me 3 hours to drink my brekky and is only the size of a Starbucks medium/grande. And that may be all me has all day besides a few sips of water. These things can make problems. Me has passed out because not enough air and unable to move. 1 time started drowning/choking laying in the tub, now that was most scary even if me finally got mine head move to side. I may not be able get dressed or leave the apartment for days and has already had a few minor bed sores but am get better at trying to move a little more even on bed. And what if something happens like a fire and I’m here alone unable to get in my chair. Mine eyegaze device is approved so hope to has soon but there is things that a computer not can do.
Me will stop now. Me am happy to has some great support people who do what then can when them can and for the service people that worked and is working to get me things like the eyegaze device and the new power wheelchair with better support. Mine insurance lady and doctor is pretty good to but there is things they not can do because has wait on the state DRS. And with the new changes and stuff me am scared will soon not be able has the things me need to live in a community and be forced into another institution and not be taken good care of or has freedom be myself to best me can. But for now me will try focus on what can do and what has.
Do you know what is funny but not ha ha funny? Me am typically for me. But even this me has to invalidate mine feelings because so much scared to upset anyone else or be a burden. Everything me type me has thing in mine head and heart that says mine problems is not that bad , that me not should bother anyone, that mine needs is not as important as them comfort and/or stress, that if them gets upset is mine fault even tho me not ask for be different or has these challenges especially now with ms. In society everything is the on the person having the problem/differences/challenges whether is autism or needs wheelchair or Deaf you has to work all the extra to accommodate everyone else instead of society making everything accessible and being understanding. Do you know how not fair that is to expect a person to not only work extra hard to function best can but also to work even more extra hard to be the understanding accommodating person for everyone else because they not can handle that you’re different and needs help even if still independent. For us to always be ok making all the sacrifices and being the scapegoat and having our needs ignored , neglected , not understood even by people that we is most close and or depends on that may not know what they is doing or they mean good is harm. Like me was tell Grr a day us with challenges is so much considered a burden that is normal for parents and caregivers to neglect or kill us and most everyone says it’s ok and understanding that we was just to much stress. No wonder me stay scared be a burden. When me was little mine birth family tried to kill me. And me has been abuse plenty. And even not so long ago abandon by people because they not could deal with me and since then mine health has only got more bad and has more needs. Ok for real me am done now. Thanks for reading. And again me will say that me am happy for the good supports me do has.