It occurs to me that in my first post, I made it sound as if my disability has been some kind of steady process. This is, for better or for worse, not the case.
What was probably the first relatively major manifestation of my collagen problems showed up when I was 12. I started tearing the fascia in the soles of my feet. They called the condition plantar fasciitis because of the inflammation that resulted, but my tearing was exceptionally bad. I’ve never heard of anyone with a case as bad as mine. Fascia is the connective tissue that surrounds muscles, bones, and organs. In the case of the plantar fascia, the part I was damaging, it is actually what supports the arch of your foot.
At any rate, I slowly did quite a bit of damage to joints in my teens and early twenties. Through frequent sessions of physical therapy, I was able to enjoy some recovery from them – not the total recovery a normal person expects, but certainly regaining the use of my previously injured joints. I was probably in low amounts of pain constantly; I learned to ignore my body pretty completely by the time I was 20 and had to re-learn to listen to it when I took a yoga class in college. The yoga class without a doubt prevented a surgery on my shoulder (which would have likely had a poor outcome). It also kept my joints in general relatively stable for a year, for which I am deeply grateful.
At any rate, things continued in much the same vein – injury, slow and incomplete recovery, continued low-grade nagging from previously injured joints – until August 2007.
I had been accepted into a law school across the country from where I grew up. I had wanted to go far; I figured, this was the last time in my life when I was certain that all I had to worry about was me – no kids, no boyfriend/husband, no pets, not much furniture (all of which was left with my parents).
Three days before I left, I woke up stiff and sore in my hands and feet. This scared me; it was not the first time this had happened. The previous time had been after a severe viral infection – the doctors thought that my immune system had gone into overdrive and started attacking my joints, worst in the hands, but present in many of my joints.
The next day, all of me was sore.
The day after that, I went from sore to truely in pain.
Ever since that day, I have been in constant, unceasing, unremitting pain. We have tried an enormous arsenal of medications, which at best make the pain bearable. I have not had a day where I felt no pain since then. A good day is when the pain is just background noise, present but possible to ignore. A bad day, well, I don’t make it out of bed except to eat and use the bathroom, and I do my best to sleep as much as possible, because at least if I am asleep, I am not actively hurting.
We don’t really know what happened that August. I have my suspicions – I believe I developed fibromyalgia. Fibromyalgia is also known as ‘central sensitization’, which I believe to be a more accurate term. In recent years, they have discovered that people who experience fibromyalgia actually have some slight differences in their brains, and in their nervous systems. Fibromyalgia often happens after an illness or an injury – a result of too much pain that sets off the nervous system so badly that the nervous system begins recognizing other sensations as pain. For me, vibrations are particularly painful. It has also made me light and sound sensitive – flashing or intense lights will give me a headache, as will sounds above a certain volume or at certain pitches.
At any rate, the whatever-it-was in August 2007 is what actually made me become disabled. It has continued to worsen, though we do not know why. I have slowly lost my ability to keep up with ‘normal’ life.