#she wanted me to have a cane from the get-go but my physical therapist didn't want to 'give up yet' so | Explore Tumblr Posts and Blogs

strwbrryvagabond · 2 months

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I need advice on mobility aids, so I figured who better to ask than people who use mobility aids, right? Long post, TLDR at the end.

I've had really terrible chronic lower back pain for a while now, it's right over my spine over all of the small of my back. I finally went to the doctor about two months ago, mid January ish, and was told I was probably a bit hypermobile but I didn't meet the full criteria for something like Ehlers-Danlos since I've never dislocated anything (thankfully, just broken a looooot of bones) and neither of my parents has any hypermobility issues. The doctor put me in Physical Therapy, and I just started my third month

Being completely honest, I am VERY BAD about doing my PT at home. I forget, I was down with the Flu in February, and all I can bring myself to do most days when i get home from school is take off the back brace I've been wearing and lay down.

The other day during lab (I go to a tech school for Cosmetology) I was having a lot of trouble standing, more than usual, so after a lot of debating, I asked my teacher if it would be alright with her if I brought a chair over from our manicure area and sat down while working on the highlights I was doing. She said it was alright so long as no one else started doing it, and so I brought a chair over, put it as high as it would go, and got to work.

I don't think I have ever done highlights that fast and that well in my life. Because I wasn't taking a break to sit or lean against my station every few minutes, I just worked straight through and got done with way more than i would typically finish in a lab period.

This is where I get nervous though. I'm worried that I just want a mobility aid, be it a cane, rollator, or what I wished for in the moment, a wheelchair, so that I can work faster. I'm worried that I'm just looking for a reason to neglect my physical therapy and an excuse to sit down. My mom who has been to both doctors visits thinks he's taking me seriously, and my physical therapist is great and checks in on my constantly.

But after three months my back still hurts constantly to the point where I don't even know how to rate my pain on a scale of 1-10 because I am so used to it. My physical therapist and doctor think I just have back posture, which I do, my back is too arched, and that I just need to strengthen my core and upper body and that will fix everything. But I'm scared that that won't fix it, that nothing will fix it and that there's just some nebulous thing wrong with me

I've been looking up wheelchairs recently, and thinking of that day in lab and how much better I felt, but I'm worried that I'm doing it all for the wrong reasons. Even if I was in a wheelchair I would still be all up for physical therapy, it usually makes me feel slightly better for the rest of the day, and I do genuinely need to improve my upper body strength for my career, it's abysmal. But I just don't know what to do. This is a long ass post, sorry

TLDR; I want a wheelchair or other mobility aid to deal with my lower back pain, but I'm worried I'm doing it for the wrong reasons. I need advice.

Thanks :)

#mobility aids #need advice #chronic pain #disability #wheelchair

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sam-the-pancake · 10 months

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Saw a post talking about how you're never too young for a disability or illness or to need a mobility aid and we wanted to talk about our experiences. (It got longer than I was planning. I have more I could say but I managed to fuck up my thumb typing this on my phone and I know if I save this as a draft I'll forget it exists).

We were 8ish the first time we fainted. Nothing was thought of it or done. We fainted twice more between then and when we were 14 and fainted at summer camp. I have a feeling that if it hadn't happened at camp in front of a bunch of adults (who are mandated reporters) that my parents still wouldn't have done anything about it.

Following that time at camp our parents brought us to a bunch of doctors and had tests done. I don't remember much of it, but what I do remember is the neurologist. He was the last doctor we saw and he basically said "nothing's wrong just drink more water and electrolytes". So our mother started buying Gatorade and coconut water for us, but it didn't help much. It stopped it from being terrible, but it didn't make it completely better. By this point I was walking around the house with my vision fully blacking out every time I stood up to go to a different room.

When I was 16 the exercise intolerance was so bad that I couldn't work out anymore. I quit the rowing team that I had loved. I am almost certain that if I had been involved in a different sport that I would have had to quit sooner. I learned just a few years ago that rowing is an exercise that is more tolerable for exercise intolerance, like a recumbent bike. I got "lucky" in a way.

When I was 19? 20? and living alone at college I took matters into my own hands and told the nurse on campus (an amazing woman) that I believe I have EDS and POTS and want to see a specialist. She didn't really know about either disorder but she looked them up with me and decided to refer me to a cardiologist and a neurologist. In the few years since then they've both run many tests and found "nothing wrong". I convinced my cardiologist to send me for a tilt table test and of course that came back inconclusive.

When I was 21 I started using a cane anytime I left the house. I don't actually use it for balance but to reduce pressure on my lower joints when they're in pain, and day-to-day to reduce fatigue. If I don't use my cane I won't make it through the work day without my fatigue and back pain becoming crippling to the point that I can't sit up anymore.

In the last 6months I found an amazing GP who heard my story and decided to get shit done. She sent me to a physical therapist (also an amazing woman), got bloodwork to prescribe me various meds that are actually helping, got me on a waiting list to see an EDS specialist, and sent me to a sleep expert. At my most recent appointment I asked if we could talk about her possibly prescribing a wheelchair and she immediately said yes and wrote the script. Between her, my PT, and Gary the wheelchair guy from NuMotion's help I'm now waiting to hear if insurance is going to cover it.

I'm in my early 20's and I can't cut or mix my own food. I get home from my teaching job and I take a nap then eat the dinner my (also disabled) partner made, and then go to sleep for the night. I don't have a social life. I don't have the energy to do more than one thing in a day. Saturdays we do laundry and Sundays we grocery shop. That's what my weekend is. Sometimes if I have extra energy on a Saturday I can shower too. People don't talk about it much but struggling with personal hygiene is a major issue I have due to my disabilities. I started taking "cat baths" when I was less than 12 (washing the important bits with a washcloth while sitting on the toilet/floor). My sensory issues due to being autistic also affect this and make it hard for me to shower even when I do have the physical energy.

When I started physical therapy, my physical therapist asked what my goals are, long term or short term. I said I want to be able to shred my portion of chicken and mix it into the rice myself when we have dinner. My secret goal is to be able to do it for my partner as well so they can rest after cooking. I said my long term goal is to be able to rock climb again, but I understand that that might never be possible for me again.

I'm not even 25 and I'm mourning the loss of every interest I've ever had other than reading, and even holding a big book open is too much for my hands sometimes. I cannot live independently. I'm lucky that I have a low impact job that pays well enough for me to support myself and my partner. They can't work but they're able to take care of the housework and cooking and moving groceries and other necessities that I can't do myself. I try not to think about the future because I don't know what a progression of my disabilities would mean for our ability to live away from our abusers parents.

#host #pancakes talk #vent #rant

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