Let me start by saying: for the most part, no complaints. I'm not complaining. Or malingering, for any House fans out there. Or whatever you want to call it. There are too many horrible things going on in the world for me to spew my own dramatic woes over symptoms that are laughable to the observer.
But this thing is in my head.
I am at a barbecue, talking and laughing with my friends, but in the back of my mind I'm thinking: my quads really hurt and the skin on my lips and fingertips feels too tight. Doesn't anybody understand? Can't they see me wasting away towards disease? I want to tell somebody about it, but who would want to listen? I have skin peeling off of my fingertips and chapped lips? Big deal, we all do, it's been a hard winter. I have trouble seeing at night because my eyes are so dry? Welcome to the world of contacts and outdoor sports. But these changes are different. They weren't there two months ago, but now they are. Such small, subtle changes but they feel like lead on my shoulders.
In my mind I'm starting the slow march towards mixed connective tissue disease. I'm beginning a chronic, progressive disease pattern. I can see the demons in my immune system. They are building strength, and piece by piece destroying me. In a year or two I might not be the same person. Doesn't anybody understand that? I'm floundering on the inside, but the outside looks normal. Doctors can only treat what they see... I don't have any heinous or obvious symptoms, no wierd rashes, no alarming bloodwork. But when I lie in bed at night, it's all that I think about. I've been worrying more and more lately. For as wierd or ambiguous as it sounds, I feel a certain darkness.
I hope I'm wrong. I hope I'm over-dramatic. These symptoms are nothing to the outsider. I look great. I'm running a marathon on Monday. Try to explain that anything is wrong when you're living it up at the Boston Marathon. But it's there.
i came across your blog and wanted to say hi! i also have pm and dm. look forward to following your blog! :)
ReplyDeleteHi Tracy! Thanks for reading. I'd love to hear your story! I hope you are living well despite our disease, and if not, I hope that you have hope for the future.
ReplyDeleteCheers,
K
Hi KH!
ReplyDeleteI'm 28 and I also have PM and fibromyalgia with occasional Reynaud's. I've had the symptoms since I was a teenager but it was only properly diagnosed in 2006. After years of treatment I've finally reached a "no pain day(s)". I guess it also helped that I started eating healthier, not that I wasn't before but I added more fruits, veggies, juices and less meat now. I also started doing Yoga about a year ago. All the stretches feel wonderful and greatly lessens the pain. I'm off the pred now and loss some weight because of it. Mornings are still a huge struggle though. My legs and arms get numb and it takes a few hours for them to be able to function well again. It can sometimes be difficult but just think, you're not alone in this and I made it through so you will too! I'll be following your blog for updates!
Cheers,
Esther
Hi Esther! My first attempt at getting off of Pred didn't go too well, as you can see. I'm back up to 10mgs these days, and I still feel some symptoms poking through. All I want to do in this life is run and ride my bike... I get so scared that it's all going to get taken away sometimes. Hang in there, and I will too!
ReplyDelete