[Image shows three spoons on a laptop background, overlaid is clipart of torn white notebook paper with a red paperclip. On the paper in black text reads, “Learning to Accept Your Limitations: PT and College” and a black disabled logo of the stick figure in a wheelchair. In the bottom left corner is the blog logo]
It has been a while since I have gotten to post because college keeps me extremely busy and I have to ration my energy to high priority things like college, homework, self care, etc. As finals are nearing I have been even busier and struggling with headaches and vomiting a lot more here lately, no real reason except probably a mix of stress and the changes in weather.
I hit a bit of a low point this weekend. Most of the time I am an extremely upbeat and positive person with everything that is going on, but every once in a while it hits me harder and I start to get a bit maudlin. It’s hard to accept my own limitations sometimes. There was so many things I used to be able to do that I no longer can. I have to put my health before things I love far too much it seems. And while I know things could always be worse, they could be better.
This weekend I was supposed to attend my spring LARP event in Maryland, but thanks to a hip dislocation and headaches and nausea I stayed home because I knew I would be miserable. Even if I did have fun, I would suffer from it for twice or thrice as long as the event itself. It was going to rain which meant pushing myself around in the mud and it’s hard enough to navigate rough terrain in a wheelchair when it’s dry, let alone wet. And while I could have taken my walker then I would be in pain from stressing my joints even more after various dislocations the week before. So I stayed home.
At first it was a moment of relief because I knew that I would feel better physically staying home, but emotionally it took more of a toll. A lot of frustration and tears, and watching Moana on repeat for 2 whole days.
I was eagerly awaiting my PT (physical therapy) which was today. I was anxious because not many doctors know or understand Ehlers Danlos Syndrome, so I was afraid of getting a doctor who had no idea what to do, or get a doctor who was unwilling to listen or would push things too fast.
[Image shows me standing with my walker in khakis and a blue and grey striped shirt, feeding tube not hooked up]
I was happy to find out that my PT knew about EDS, knew not to push the movement but that I needed to do non weight bearing muscle strengthening exercises. She was incredibly nice and funny and talked to me like a friend while we did evaluation of my joint strength and did a few chair practices and had me walk a bit so she could see how I walk so she could better evaluate what braces would work best for me.
She told me to let her know when my pain was too bad and we could stop, but I pushed through because I was a bit excited and it felt so good to know I was making an effort. I often feel like people think I do not make an effort because I use mobility aids and because I’m not up moving all the time. So it felt validating to know that my PT acknowledged my pain and weakness and we worked with that to still get some exercises as well as she encouraged the continue of KT tape because it is good at helping with stability.
[Image shows my legs covered in KT tape laying across a couch with a white blanket with owls and a green blanket down towards the feet]
We only had a bit of issues with some buckling of knees when she had me walk with the bars which caused a bit of a sharper pain in my right knee and some bruising but overall I was extremely pleased with my first day of PT and she wants me to come back twice a week and she gave me some chair exercises to do at home.
[Image on the left shows me sitting in lavender shorts with my knees with KT tape and then using a belt to do some strengthening exercises from today. Image on the right shows a paper with a fold in the middle, it has little images of people sitting on chairs doing exercises and text explaining those but it’s not very visible]
After PT I went home and ended up taking a nap once I set up my feeds because I started getting a really bad headache. I woke up throwing up so I missed my class of the evening. I did some PT exercises while watching Moana for probably the 100th time (seriously the best movie ever).
Finals coming up have me a bit stressed out so I’m trying to remember to allow myself time to relax, hence this blog post, because if I stress too much I will become overwhelmed, I’ll get sick and it will make the things I stress about even harder. So I have to take a deep breath, remember my limitations, and do what I can in that moment and try not to overwhelm myself by the future. Present day Grace has to take care of Future Grace and the only way she (I) can do that is by remembering self care and to accept my limitations, no matter how hard that may be.