It's been a while since I've talked about Ehlers-Danlos Syndrome. My blog has had a focus on chronic illness in general; however, I want to write occasionally about my conditions themselves. I feel as if my EDS is progressing, and that scares me.
I always keep a record of when I take my pain medication. Looking back over my March planner, I noticed a sharp increase in the number of times I needed to take it. In an average month, I may take a pain pill once or twice. That doesn't mean I don't have pain though as I use them very sparingly. In March, I took them two, and sometimes, three times a week! I used to have a pain tracking app for my phone, but I don't know what happened to it. I probably deleted it trying to free up some memory. This particular app was very good. You could enter in your pain level, activity leading up to the pain, the location of the pain, the weather, and what medication you took and if it helped. I know several apps track pain. If you have a Smartphone and suffer from chronic pain, you might want to take a look at the app store and see if you can find one that interests you. If I would have had a pain app in use, I may have been able to pinpoint the cause of the increase in my symptoms a little more easily.
In addition to the increase in pain, I've also been noticeably weaker. My already low stamina is even lower. I cannot stand in one place for more than a few minutes. I used to be able to last five to ten minutes. And, even with my shower chair, bathing is a chore. While I'm not standing, I still have to use my arms to wash up. That wears me out. In the past, as long as I was sitting, I did reasonably well. That's no longer the case. I'm so thankful we live in a house that doesn't have stairs. We've lived here three years now, and one of the reasons we chose this house was because it's all on one level, our previous home was not. Now, whenever I have to go up or down stairs, I really feel the pain and notice the weakness.
I am also experiencing more dislocations. My shoulders have always been a problem, dislocating several times a day. When I last saw my doctor, he said I'd developed arthritis in both shoulders. Osteoarthritis is very common in EDS. I know that's what's causing the increase in my shoulder pain. My knees and ankles are partially dislocating nearly several times a week now. I'm just a mess. A worn out mess. Much like this little guy.
I have a few theories as to why I'm progressing. One reason is aging. EDS causes wear and tear on your joints that, over time, will naturally progress. I'm 53, nearly 54, and there's no doubt in my mind, that changing hormones can cause an increase in symptoms. Weather changes could also be a factor. Our March weather was very changeable. We had temperatures right at freezing and as high as the lower 70's. We had rain and snow. It really was a mixed bag. I recently read, humidity levels, regardless if they are in the winter or summer can cause an increase in pain. That makes sense to me. Something else, I had a virus in late February, early March, that could also cause an increase in symptoms.
Since I became ill, I've gone through several spells like this; each time I wonder if the changes will be permanent. Many times, they aren't. Deep down, I know that one of these times, they will be. Realistically, that's what I'm facing. Because I'm dealing with more than one chronic illness, the assault on my body is that much worse.
I'm trying not to let it get me down too much. I know there's only so much I can do to help myself. I've put off going to an orthopedist for far too long. I have to make it a priority. The problem is finding a doctor who understands EDS. Honestly, I'm not sure what they can really do. I'm not a candidate for surgery, and its doubtful injections would help. I'm hoping I can find a good brace that will keep things in place.
I try to be hopeful about the future, but it's hard. My husband and I, recently, found out we are going to be grandparents this fall. To say I'm happy is an understatement. I'm ecstatic! I'm also concerned about the kind of grandmother I can be. My daughter has already asked if I could maybe babysit should she decide to work part-time. I'd love to, but I don't know if I'll be able to. I know I can still be a good grandmother, regardless of my limitations, but it won't be the kind of grandma I want to be. Oh, here's their Facebook pregnancy announcement.
Have you ever faced something like this in your chronic illness journey? How have you handled your fears? I know I can't be the only one who is dealing with these kinds of life changes and a progression of symptoms at the same time. Thanks in advance for any and all input.