Wednesday, July 13, 2016

Painsomnia #TheStruggleIsReal

The struggle with having a virtually invisible disease like Arthritis, is that I think people actually forget that I am a REAL patient with REAL symptoms. 

Although I’m doing really well on my triple-combination-treatment therapy, I still struggle daily and experience flare-ups once or twice a week. 
One of my struggles is sleep. 

These days, I sleep about 4-5 hours a night -if I’m lucky- and my current record for the no-sleep marathon is 42 hours. 
I’m actually quite functional on even 2-3 hours of sleep, as long as I sleep well once or twice a week, but lately, I haven’t even gotten that.

My main problem is stiffness. 
I’m constantly getting in and out of bed just to crack my joints. Last night, I even did some “in the dark” yoga because I was desperate, but no cigar. Even though I lay with a hot pack virtually every single night, it doesn’t quite get me comfortable enough to sleep. I don't know what the deal is! And the only time I actually can sleep is when my body gives out...at really strange times...like when I’m driving or in the middle of a really interesting lecture or during dinner. No bueno! 

For those of you who know me personally, I tend to typically be a pretty high energy person and oddly enough, that hasn’t changed! I just pass out at inopportune times. Then, after a quick nap, my body is up and ready to go again! You’d think that’d mean that I take naps every day, but I don’t, because I want to SLEEP. AT NIGHT. LIKE A NORMAL PERSON.
I’ve even tried losing weight and working out to help my body feel more tired, but again no cigar!

All this is for the purpose of clearing up any idea that just because I look fine, I am fine. 
I am trying really hard and I do feel pretty great a good majority of the time (You should see all the stuff I can do now! :) 
However, I think that a lot of people get the misconception that just because I’m on treatment, I’m cured. This is not true. 
I am a real patient with RA who has to deal with managing a life, despite pain and stiffness. I’m a normal person with an abnormal immune system. I'm still figuring it all out.
 This is simply my journey.

The one thing I hold onto is this:
It is not the problem, but how we deal with the problem that truly defines character. 
My problem is Rheumatoid Arthritis.
What's yours?