Chronicles of Life with Multiple Sclerosis
Stigma can stunt recovery. People can feel forced to internalize their issues and stay quiet about them because they are afraid of being judged. Let’s fight the stigma so that more people feel comfortable speaking out and getting treatment.
" I was misdiagnosed with lupus for years before the doctors figured out it was really MS."
Having a bit of an anxiety attack about my ssi review tomorrow morning. Should be asleep since the call could come anytime between 8am and 12:45pm but couldn’t sleep. Decided to look through my pictures on flickr and found a set of Zoya pics I hadn’t seen in a while.
Here’s a picture of young zoya, before she started hating her baths, and was still small enough to sit in my hand comfortably. She didn’t seem so tiny then but looking at her now, sleeping in her terrarium, she’s grown so much :)
Anyway, Just thought I’d share this picture. It filled me with so much love and calmed me down enough I think I may get to sleep soon. People question the power of non traditional support animals, but this is one of many examples from my life that shows how impactful she is on my overall wellbeing. How she helps get me through stress, sadness, bad health days, gives me a reason to get up in the morning, keeps me motivated.
These are random thoughts now, but hopefully soon to be a well written argument in support of animals for those with chronic illnesses.
So tomorrow I have my first SSI re-qualification interview in which I have to prove to a stranger that a miracle hasn’t occurred, no one has found a cure for Multiple Sclerosis and I still have no income, am in incredible debt and haven’t won the lottery. WOO! Then I get to do it all again next Tuesday!
And of course they picked the day I have two doctors appointments to go to immediately after, both of which stress me out… I mean.. why worry about things like that when interviewing the chronically ill, disabled people on your list.
While I haven’t been blogging here to avoid falling into an illness absorbed spiral (and focusing instead on baseball…Go Red Sox!). The vaccine I was required to get before starting Gilenya made it possible for this post. Yes. this post in which I share that I have the freakin’ chicken pox. 34 years old and I have the chicken pox for the first time. To be fair thanks to the vaccine its a mild case… but it sucks and I’m sure I’ll end up getting the shingles in a few years anyway.
Thanks MS! you are forever making my future New York Times Bestselling memoirs more interesting. heh.
You know what really sucks?
You can be perfectly fine - almost feeling normal, even. And then It comes. It comes and whispers:
You’re sick. You’re never going to be normal. Who are you trying to fool?
It makes you miserable, on top of whatever your body’s latest rebellion is, and drags you down so far that all you can do is lie there and stare into space. You’re not crying, you’re not even sad…just dealing with reality:
Look at yourself! Everyone sees how you really are. Your scars, your dark circles, your weakness…you can’t hide it.
It isn’t going to go away.
Everyone tells you “Get better soon,” but we both know how likely that is…
It is a permanent state.
You’ll never be better…
It pulls at your deepest fear:
You’ll only get worse.
And all the positive talk in the world can’t make It go away…not easily, and never permanently.