#balance problems

[johnschneiderblog]

'Can I stay in my home ...?'

Our friend Richard Prangley, who's been experiencing balance problems, took a spill on the sidewalk outside a Burger King last Thursday.

He tried phoning me for help but I was Up North. Richard then worked his way through his short list of people who might come to his aid. No luck. Ultimately, a kind stranger picked him up off the pavement and drove him home.

A neighbor then drove Richard to a hospital emergency room where X-rays revealed no broken bones - just scrapes and bruises.

In light of other falls in recent months - plus the ordinary ravages of aging - Richard is now obsessed with the question of how long he can hold on to the independence he fought so hard to achieve.

He feels threatened. He worries about his beloved stuffed tigers and ceramic ducks and collections of collections, acquired over his 26 years in the the house and arranged just the way he wants them.

What would happen to all that, he wonders, if he has to leave?

Sharon I took supplies to Richard Saturday and did what we could to cheer him up and convince him that the setback is temporary. I hope we're right.

[thatqueeridiot]

I probably have endometriosis and I’m currently on my period which means I don’t have the energy to shower and I’m currently proud that I when outside and that I eat more than just candy.

But I also have autism and it’s like 25 degrees outside and we do not have ac. The sweat is a sensory nightmare but the thought of showering feels like a sensory nightmare too and I’m way to tired to do anything.

At the same time, I have a balance problem that gets triggered by heat. And what helps bad period cramps? Heat.

So not showering will mean that I get dizzy and have bad sensory issues but showering means bad sensory issues and being exhausted.

I love being disabled and I would never want to get rid of my autism or my hearing problems but the endometriosis and the balance and dizziness problem can go fuck itself.

[crazycatsiren]

One day. One day I will be brave enough. Enough to trust myself in an attempt at operating one of those motor scooter shopping cars in a store. One day.

[chronic-confessions]

Confession #5,375

One of my friends keeps complaining that I don’t dance. I understand that it’s because she has anxiety and she wants me to go places with her and she likes dance clubs/bars. But it’s also really hard to extend empathy when the conversation is always

“We should come with me to x- oh, but you don’t dance” “Yup” “Whyyyy” “I have anxiety” “Just get over it! Nobody is watching, and they’re all a bunch of white transplants with no rhythm anyway, it’s fine” “Anxiety isn’t rational” *in a half joking tone* “I hate you” “I hate me too!”

Like. I get self conscious about WALKING and commuting on a day to day basis. I have a visible limp, poor balance, and I get people making snide comments whenever I don’t give my seat up for older people even after they see me take my meds. I’m also fat which makes me hypervisible and I’m just not very confident in my dancing which shows. I also don’t drink because of my meds. So why would I waste spoons by getting ready, making myself anxious, hiding said anxiety, forcing my autistic ass to socialize, and then sitting through a night of someone complaining i’m not dancing?

And it also sucks because I also wish I could dance! I wish I could do a lot of things that I can’t because of my multitude of illnesses/disabilities. I don’t CHOOSE to not do things that look really fun. I don’t CHOOSE to be tired all the time. I don’t CHOOSE to get self conscious because I can only wear one pair of shoes without worrying I’ll get some sort of injury.

This also isn’t unique- I feel like this friend just doesn’t hear the way they talk to me. They will make fun of my for things- which I can deal with but- then they turn around and ask me to trust them even though “other people” make me feel embarrassed to express certain things. As if they aren’t contributing to what makes me talk to them the way I do.

I don’t feel like I can say anything though because, as insensitive as they can be, they feel more fragile than I am so. I just have to deal with it for now.

[fibromyalgiais-blog]

Fibromyalgia is...

Needing to take an elevator instead of an escalator because it makes you too lightheaded/dizzy/nauseated, you are a high risk of falling because of balance/lack of strength to hold onto rail, and/or your mobility/assistant device(s) aren’t escalator friendly.

[crazycatsiren]

Me: "Another huge bruise on my leg? What the hell?"

Also me: "Why ask, I trip on air."

[fibromyalgiais-blog]

Fibromyalgia is...

Loosing your balance frequently (even when standing still).

[chronic-confessions]

Confession #2,335

I hate reading that when you are diagnosed at an earlier age that MS symptoms can be a little milder or a bit different. I hate reading that the worst symptoms usually come later in the disease or near the end of the disease, which I’m guessing they mean is just later in age but the end of the disease can be different for different people. I’m 22 and I can barely even remember what I ate for breakfast, if I was awake to eat breakfast, what the hell I just paused on netflix to type this out. I mentioned my memory problems to my neuro, he recommended some kind of vitamin or something like that, and I forgot what it even was before I even left his office. I keep not wanting to talk because my word finding keeps getting worse, I keep just listening to new music because I forget what playlist I usually listen to or was going to listen to when I opened spotify. If you ask me what my favorite song is the answer is always going to be different and it’s not because i’m indecisive. My sleep schedule is horrible because I keep forgetting how many times i click the snooze thing on my alarm to take my meds. I don’t like driving because part of me is worried that I’m going to get lost and what if I also forgot my phone that day, or what if I forgot to charge it. Every damn thing about MS is frustrating; the pain sucks is horrible, the lack of balance can get just embarrassing, the trigeminal neuralgia can get to be the worst thing in the world, the 19 pills a day feels excessive, but the memory. Mine has never been great anyway, I can’t remember being a kid for shit because of shit with my parents and apparently my brain’s plan was to try to forget it all but I’d like to remember shit now. This pausing in the middle of sentences because I can’t remember what stuff is called or what I was going to say so I don’t want to talk at all fucking sucks.