#last I heard i desperately needed braces but my mom didn't want to pay for them | Explore Tumblr Posts and Blogs

anxietysroomsupport · 3 years

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Hypermobile anon here. First, thank you so much. It's just nice to know there's someone here for me. And to give a little more info, I have a serious problem where if I'm not currently in pain. I don't remember how bad it was. I know everybody does this, but my brain literally checked out as I was going to bed recently and I fell on the floor. I nearly forgot to tell my physical therapist.about it because it didn't really hurt. So, I can't do the pain scale very well, and I never remember (1/2)

(2/2) It just makes it sort of hard for pain relief when I don't know I'm going to need it and don't have the energy when I do. Also, on the vitamin subject, I know that I've had vitamin d issues before (bad heat exhaustion and allergy scares = going outside less), bad enough that I was close to being diagnosed with hypothyroidism. I'm not sure about the others, but I do know I'm not amazing healthy, so? I take calcium pills for the vitamin d, though. Again, thank you guys for all your help.

We just got a bill from my PT place that says we owe money that we can't pay. They told us up front how much it would be with our insurance, and my mom's been paying each time, but it says we owe 177 dollars. Sure, it's not a lot, but we're not rich and trying to send a sibling to college. If we can't get this sorted out. I can't just not go. 10 exercises I can do at home and 5 appointments is not enough to help a chronic disorder. I cant focus and I have practice in 30 mins. -Hypermobility anon

Same day but later when I'm feeling a little better (my director was very supportive though so that's nice), I'd seen the letter and heard my parents talking a bit, but my mom told be as we got to school for rehearsal about PT. I got upset, and I felt bad because I could tell she felt bad because she didn't expect me to be upset, and in the heat of the moment I said "chronic illness" in front of my mom for the first time. She loudly (not quite yelling) (1/?) - Hypermobility anon

said to me "That is the most self-pitying thing I've ever heard. Chronic illnesses are like cancer". Sure, I probably should've said disorder and not illness, but I'm scientifically right. Then I said "It is, it's chronic pain, I am always in pain" and she said "Well then clearly PT isn't helping anyway" - I??? When I went in after 15 minutes after another girl, since we were both there for an hour and a half, I decided to stop trying too much to hide my crying (useful masks) (2/?) -HSD anon

since the other girl was in the hall to eat, and when I managed to explain to the director, she was understanding and nice, and when I said chronic, she said that I should never have to live with that, especially at my age. And when I mentioned not being able to sing at that moment from my crying, she pointed out how I was singing an empowering song that was about standing against the bad stuff in life, and I was perfect for it. I know my mom was just mad, but it just drained me.

Sorry I keep sending asks so often, I just feel like telling someone this. I decided to put 'zebra' in my bio. It's a thing that people with EDS and HSD sometimes like to call themselves. I like it, so even though I just have my name and pronouns, plus a random joke, in my bio, I added it. It just feels like a step in the right direction to remembering that I don't need google to tell me I'm dealing with this every 5 minutes. Accepting it, I guess. :) -HSD anon

My sleep schedule just keeps getting worse and I think it's my ADHD combined busy days and pain but I just never want to sleep anymore. I can't, I don't want to, and it hurts physically and mentally to just lie there and see if I can fall asleep. 80% sure my circadian rhythm changed to sleep at about 2 am but I get up at 7 and have a chronic disorder that's getting worse because of this I *need sleep*. And I'm so scared I'll mess up, want to make a side blog for it but want to make one (1/2)

for something happy first because I always figured that if I had side blogs they would be ask blogs or for fandoms or whatever. But I got a little better at not caring what other people think, so I haven't really needed one for fandom. But I looked through the tag and felt so comforted by some of the stuff that I just think it would help me. Maybe I'm just extra bad tonight because I went outside but also talked about it a fair amount with a friend I hadn't seen recently who didn't know. -HSD

I wanna talk to my physical therapist about hip braces because I tried a knee one we have and it honestly helps, but my hips are worst so I wanna see if it would help, but they're pretty expensive. It's hard to find dual hip braces, from what I've seen in my research, and even though one more than the other, both cause me issues. Idk, I'm conflicted, because it could help but is it worth all the effort? Also, even if it's under clothing it's still physical evidence (1/2) -HSD anon

(2/2) of my "invisible" disorder. Also, stopping exercises for a few days because of not feeling well from my covid shot reminded me of just how much time I spend on them, so it's another thing to deal with this. . . Idk, sometimes I just wonder if it would be better to just deal with it. I still have pain anyway, though it might be a little better. Less often, maybe? I don't really remember. It's not stressing at the front of my mind all the time, but the back of it. I'm just conflicted. -HSD

HSD anon here, idk if I mentioned it in an ask already, but recently I had a small breakdown because I was watching something where a character was in a car accident, as was trying to push through having trouble walking even with a hip brace. After a minute, I registered it and just thought "That could be my future". My joints had already been acting up and then they got worse, so I don't know if it was cause and effect? But I don't exactly know what to call it other than a trigger. (1/2)

Physical and emotional effect, at least I'm assuming on physical because I've had a bad reaction to something similar before, but like, I don't have trauma, I think it's more fear of the future. And I don't want to use trigger incorrectly, it's insensitive to those who actually have triggers. I'm just so confused.

Forgot to sign the last ask with 2/2 and HSD, whoops.

Hfnsiwk I'm not ready to walk into PT tomorrow and say that I don't think months of PT have been helping but I have no way to be completely sure because for all I know it's the weather since this is the first year I've known/it's been noticeable. Maybe it's just change, I don't know, but it just feels like such a waste of time if it really didn't help. Plus, I'd stop, and while that'd be great, I do enjoy being stronger, even if it didn't help pain. I have 12 hours and a bad pain day idek. -HSD

Hi Hypermobility Anon,

I think I found all your asks and got them in the correct order. And found your last ask!

I’m so glad you kept writing in. I think you should go ahead and make your side blog - you definitely have enough material for it. Wanting to make a happy side blog also is a great goal to have, but if you don’t know what it will be yet, don’t let that prevent you from doing something you know you want to do and that will probably help you.

You are dealing with So. Much. Your mom especially sounds like she just is not ready to accept the situation. It’s not self-pity to state your actual conditions. It’s just reality.

Forgetting about pain is normal, and really all you can do is try to write it down or make some kind of note about it in the moment or immediately after, so you can refer to it later. Maybe you can track your pain events in your phone notes.

I think your idea to add “zebra” to your bio is a good one, this is part of your life and just something you have to deal with. It sounds like you’re finding a community for this.

Sleep schedules are tricky, and feeling like you desperately need to sleep can make it so stressful that it starts a vicious little cycle. Some strategies to get around this are First, remember that just resting is okay and helpful too, even if you don’t fall asleep. Letting your body lay there to rest is good for you.

Second, if you’ve spent several minutes laying down without falling asleep, its okay to get up and walk around, or any small light exercise that’s comfortable for you. The goal with this one is to get out of the bed for a bit. It will help your brain to re-learn that the bed is for sleeping only, not for laying awake. That association can help signal to your brain to start its sleep-process when you get into bed at night.

Third, it’s really common to have a changing circadian rhythm during your teens and twenties. That’s just a thing that happens and you can’t do much about it, so just try not to worry too much. Sleep when it feels right and when you can, instead of trying to force yourself to sleep when you’re “supposed” to.

If hip braces would help you, you should definitely at least mention it to your physical therapist. You might research online for any used ones as well. A physical sign that you have pain can have good and bad consequences, but I think the good consequence of being in less pain far outweighs any others.

The triggering event you described is not so much a trigger as it is just a genuinely really upsetting situation. You related really strongly to the character you were watching, because they’re dealing with similar problems to you, and to problems you could have in the future. It’s a lot to process. But while you could potentially be in a car accident, remember that television is made to dramatize events and probably made it seem a lot more difficult and scary than it really would be.

Since we know you sometimes forget your pain, it’s safe to say that the exercises are helping you manage it, and you say that they’ve made you stronger in general. Those are good things, and I would recommend you continue the exercises you can do on your own even if you end of ending your physical therapy sessions. We don’t know yet if your pain might have gotten even worse without therapy. You’ll have to find that out on your own if you stop exercising, and then decide whether it’s more worth it to you to continue exercising or to live with the pain. Whichever you choose, it’s Your choice, Your body. Take care of yourself. <3

-bun

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