I was actually taken back, as I read the words that I had subconsciously typed. One by one, each word appeared on the screen and I read…
“I don’ think I can do this?”
It was last week when I read about a woman who has struggled with PMR for 4.5 years and had reduced her Prednisolone to 2.5 mg daily (just for context, I’m reduced to 65 mg daily!). After reading her story, I felt like I had been kicked in the teeth!
She was, understandably, feeling down and discouraged because she continues, after 4.5 years, to be plagued, by relentless, unyielding, debilitating fatigue. In her own words; “It feels like my gas tank is running on empty.”
My first thoughts were, “Wow, I can relate to this… I know about this crippling, perpetual, exhaustion!” And it was actually kind of cool, that here was someone else I could relate to; a kindred spirit, a compadre, a virtual friend who felt what I felt.
Then, I panicked. And from there I started to “freak out!”
I realised, “Hey, wait, I am only 90+ days into this nightmare! She’s been dealing with this for… WAIT, what? How long did she say? Did she say 4.5 years? WTF! Nooooo! No way… I can’t deal with this shit, for another 3 or 4 years!
Seriously! I don’t think I can do this!
Yeah, yeah, this is where you get to call me a Drama Queen, you get to call “bullshit” on me, you can snigger at what you think is my clever use of theatrics to try to write a more interesting story… I truly wish it were any one of those!
But really… I honestly do not know if I am strong enough, brave enough, tough enough, or if I have the fortitude to live like this for several years!
Did that word register with you? I said, “years!”
I’m already dangerously close to my “sell by date.” In 3 to 4 years, if I’m not literally “expired,” I’ll be past my sell by date. By the time I start to feel better and have worked my way though theses shitty autoimmune diseases, I’ll be on the wrong side of 67/68, with most likely an abundance of other “elderly” health related issues and quite possibly on my way out anyway!
So what now? I just accept this living hell for the next 2, 3 or 4 years… Only to get through to the other side and expire anyway, like a freaking quart of milk?
I wish I had the words (and the writing skills) to express just how paralysing and disabling these destructive diseases are. The continuous pain and the infinite and total exhaustion have to be inconceivable to someone who has not experienced it.
Imagine, for a moment, you. You’re thinking about completing one of the ordinary, mundane tasks that you might do on any given day; change the sheets, vacuum the floor, walk to the market, clean the bathroom, whatever.
Now picture yourself, completing that task. Notice that it has taken you twice as long to complete the task, because you’re breathless, you feel stiff and your arms and shoulders are refusing to do what you tell them to.
Now, feel yourself, very suddenly (as if someone has hit you over the head with a ton of bricks) consumed by an overwhelming feeling of utter and complete tiredness and a total lack of energy.
This isn’t any old tired… you are ready to drop, tired. Shattered, totally drained, knackered to the point that you MUST sit down or you will fall down.
You get to the couch and you collapse.
Maybe 45 minutes later, you realise you’ve just been sitting there; totally zoned out, staring at a lamp! You don’t know where the time went; you feel kind of numb and a little confused; and you realise that’s it. That’s you for the day. You are spent, cooked, done.
Let that sink in… All you have done, is change the fucking sheets!
You’ve changed those sheets a million time. You’ve done it without even being conscious of what you were doing. You’ve done it and moved onto five other chores without giving that particular task, a second a second thought, but not today.
Today, changing the sheets has beat you.
Changing the sheets has kicked your ass.
Changing the sheets has crushed you.
Sure, it may get better.
Maybe you’ll get to the point where you can do one or two chores a day before you crash and burn. Maybe you’ll go out for lunch with a friend; then it’ll be home for a nap. On a good day, maybe you’ll take the long walk to the grocery store; you’ll do the shopping, carry it home and make a nice dinner… but, you’ll most likely pay for it by spending the entire evening “recuperating” on the couch.
The agonising and undeniable truth here is that your life (MY LIFE!) has been irreparably changed, forever.
Things will never be as they were.
The best case scenario? Maybe I come out of this tailspin somewhat easily, with only minimal scars. Maybe the diseases settle down in 2-3 years and the symptoms subside; I’m able to get down to a tolerable dose of .5 or 1 mg a day; the side effects, of which, are minimal. I’ll be plagued by few if any “flares” and the pain and total lack of energy will be manageable. Maybe, I’m no longer a total loser sitting on the couch twiddling my thumbs, staring at lamps. Perhaps, I am once again a productive member of society!
From my mouth to God’s ears.
Between now and then… Yes, yes, I know, “there are a lot of people out there who are way worse of than me.” Yes, I get that I’m being a being “overly dramatic and a BIG BABY about this.” Obviously, “bitching and moaning is unbecoming and not at all attractive in any way!” “People hate whiners!” I understand this “is not the end of the world” and I should just “shut the hell up and suck it up.”
Yup, got it.
However…. as Evinda Lepins said: