The problem with having a rare illness, whether it is rare because it simply doesn’t occur often or because it is under-diagnosed, is that you don’t know how it can affect you. Every ache or pain or abnormal symptom could be from the rare disease or it could be something new. So eventually you start to look for others’ who have the disease and you form a community (There are many amazing Ehlers Danlos groups on facebook) and in this community you are able to share similar symptoms and eventually get to know what to look for in the disease and what to expect. When I was first made aware of this disease I scoured the internet to find patient experiences and what actually living with the disease was like. You can read a medical link that will tell you which symptoms are associated with Ehlers Danlos, but it doesn’t quite compare to knowing what a patient deals with on a daily basis. So I plan on dedicating some blogs to that daily experience. This is the first one:
Living with EDS and its friend POTS (Postural Orthostatic Tachycardia Syndrome):
My day started with my alarm going off at 7am so that I can take my medications. I go back to bed (Thank God! I have enough trouble sleeping as it is!). I wake up about a half hour before my alarm goes off due to the pain in my lower back. I curl up in the fetal position to try to alleviate it some before I have to get up and be active. The alarm goes off and I reluctantly get out of bed, feeling as exhausted as I did when I went to bed the night before. I walk around my bed, in order to open my blinds, cracking various joints in place as I walk. *crack* there goes my left hip, that one’s a “trouble” joint for me. *Crack crack crack* and now we have left knee, somewhere in my back, ankle.. I finally get to the window and decide to stretch. Big mistake. I get lightheaded, dizzy, start to loose feeling in my extremities and can no longer see. I thrash out, hitting a teapot and then fall to the ground as I fully lose control and start to twitch and spasm. Within a minute or two I gain back my senses, wake up enough to realize what happened and to stand back up. Luckily this time I fell on a pile of pillows that I took off my bed the night before. I check my teapot to make sure I didn’t break it on the way down (Yay! It’s still good!) and finally open the blinds. I then take a shower and go about getting ready to go into my research lab (Bio major grad students unite!).
While in the lab I take in all the various aches and pains. The muscles of my legs and back hurt. My back muscles are visibly swollen and feel like a rod running up along my spine. I guess that’s from the hypermobile spine and the extra work the muscles put in just trying to stay vertical. I sit down in lab as often as possible. Standing hurts and I begin to get light-headed if I stand for too long so I’m either sitting or leaning against something. At one point while moving around in the lab I experience a run of palpitations. I just ignore the “flip-flops” going on in my chest and continue my work. Also while moving around the lab, I’m in constant pain from my unstable joints. You can hear *Crack! Pop! Snap!* as I move as the joints constantly shift, some subluxing and then relocating. I finish with the work in the lab and make a trip to the hospital to see if some of my test results from the day before are available yet. The EMG resutls are in and yay for no myopathy or neuropathy! Although I am disappointed that I still do not have an answer as to what is causing some of my symptoms. I do have some difficulty reading the results. Lately my eyesight has gotten very blurry, especially with writing and it is causing me to have significant difficulty while reading at times. I’m hoping the MRI results will shed some light on possible causes. I’m also waiting for the results of my MRA before I can start my one new medication (Midodrine). I want to make sure that there are no abnormalities in my brain vessels before I start a drug that is known to have dangerous elevations in supine blood pressure.
Then I go get lunch. I don’t eat breakfast because it makes me sick and nauseous to eat so soon after waking up. For lunch I eat at Taco Bell. I used to love drinking their flavored Mt. Dew soda, but I can’t handle the caffeine anymore. It shoots my heart-rate up to 130+ easily and causes horrible heart palpitations. So now I settle for drinks that do not have as high of a caffeine content. Once I’m done with my food, I struggle to get out of the seat. I was sitting in a booth and unfortunately I have to get out on my left side. Being my “trouble joint” and all, my hip likes to slide out of place at any given opportunity. So I support myself on the table and *crack* my hip back into place before I’m able to put my full weight on it. Before I learned this little trick, I used to try to place weight on it right away and would get a STABBING pain and fall as my hip gave out, unable to support the weight. Thankfully I’ve realized its game. Every now and then I forget and do fall though.
After lunch my day’s over! So here I am writing this blog. I’m currently laying on my bed typing away. My back hurts from being in the same position for too long. My ankles are unhappy with their positioning as well. The knees are starting to ache and eventually I’ll have to move them. My wrists are not pleased with the typing (*crack* *crack*). This is my average amount of pain. It is manageable and is no where near as bad as it can get. This is also a relatively lazy day for me. It’s spring break and classes are not going on. I am trying to take advantage of the chance to rest.
That ends today’s activities and I believe it’s time for me to get off the computer. The words are blurring together and my wrist has *cracked* five times now…err…six… within the past twenty minutes (seven -_- ). Definitely my disease presents some problems that I have to work around, but it’s my “average” now and as far as days go, this wasn’t a bad one.
Until next time Dear Reader 🙂