This month I’ve had a very rude awakening about just how much physical therapy helps me. As someone with POTS and EDS, I have lots of chronic pain, particularly in my upper body and limbs. Whenever you go to the doctor or physical therapist, they ask if you can rate your pain scale from 1-10, 10 being completely unbearable. I’ve had very wide ranges, but the more I am able to go into the office and have hands-on work done, as well as doing my monitored strength and mobility exercises, the better I typically feel.
This article about exercising and living with EDS is well written and super-relatable. My insured PT visits ran out this month and I’ve only been a little over a week without care, but my pain levels have quickly shot up to an 8. I can’t focus on anything entirely because of how much everything hurts, and I can’t do the activities I’ve worked up to because of how much it hurts my shoulders and arms. Sleep is the only thing that relieves my pain right now, and I need to get back to my therapy sessions as soon as possible so that I don’t lose the progress I’ve worked so hard to get. It’s so frustrating living in a body that depends so heavily on doctors and working out the right way, but the thing that is the most difficult isn’t the time or effort put into all of this; rather, it’s the expense and toll this unwanted illness takes on myself and my family. I’ve always tried to remain positive and focus on the good in my life without allowing myself to dwell on the fact that it’s not fair for a young twentysomething to be sick, however it’s a lot more difficult when I feel like everything in the healthcare world is working against me. I don’t want to debate politics on this blog — ever — but one thing I do want to touch on is that I very strongly believe that people with disabilities should be cared for and given as much help as necessary to have as much of a chance at normalcy as possible. “Normal” hasn’t been attainable to me yet, but I feel blessed enough to not constantly have sharp, intense pain that I am grateful for the help I do get through physical therapy.
In the meantime, I’m going to continue to do the best I can by doing my gentle stretches, mobility exercises, and managing the pain the best I can until January comes when I can get back in a normal routine. I have a pretty big doctor’s appointment today, and am hoping to get some relief from my pain tomorrow, so if you could say a little prayer for me that would be amazing. I’ll be back on this little corner of the Internet soon, but wanted to write a quick update about what’s been going on lately since I haven’t been great at keeping y’all updated. Love and hugs to you all.