First, a pretentious poetic interlude…
As each morning dawns vaguely, I miss me,
sunrise can’t clear my fog obscured brain,
it can’t return the man I used to be,
who unknowingly traded youth for pain.
I’m tired of being exhausted each day,
stiffened and aching, my patience breaking,
a creeping funk that just won’t go away.
When did life stop giving and start taking?
Achy, dragging, spirit slowly waning,
concentration wandering, thoughts stray
restless slumber stealthily draining,
silently stealing who I was away.
I cringe to think I may be whining,
sniveling when I should remain silent.
I don’t want pining to friends defining,
who I became and why they finally went.
But I am not who my sickness decides,
It’s only part of the man I remain,
within sore body a mind still abides,
despite exhaustion, enduring the shame.
Questions are many and answers are few,
and I’m still working on what I must do.
There, the poetic interlude is passed and now onto life with fibromyalgia.
Waking up is an interesting way to start every day, you lay there and take inventory, any warning signs of dizziness? You look for these because if you sit up too fast and the vertigo kicks in you either go right back down or you can fall out of bed, option 3 is either of those combined with throwing up. Stretching now comes with noises as the sinews and ligaments stretch, groan and pop. On your average morning I sound like a box of tictacs being shaken as I finally make it to my feet. Balance is still a bit tricky at this point and even with my glasses on I can’t quite get my eyes to focus as I head for the bathroom. For men, a word of advice at this point: if you still can’t focus and balance, go ahead and have a seat. Picture waking up with a hangover every morning and you’ll have a pretty good idea of what morning is like.
No, I’m not going through my entire day, that would bore everyone, especially me. I’ve already done today once, twice seems pointless.
Morning is definitely the absolute worst time of the day, and by morning I mean whenever quit sleeping, and sleep is really a relative term at this point. Sleep has many purposes, your body uses sleep as a time to do all of its housekeeping, it sweeps out all of the wastes and toxins, it replaces worn out cells and it heals the various dings and dents that you accumulate through the day. The breakdown comes into play when the body doesn’t reach the deep sleep that triggers the restorative properties of sleep. So those chemicals that build up through the day aren’t purged from the brain and muscles, strained muscles and connective tissues aren’t repaired, and you wake up feeling just as tired as you did when you went to bed.
It’s a real pain in the ass. And the Neck. Back. Knees. You get the point.
Eating is a bit of a challenge too, because one of the many many contributing conditions to FMS is Irritable Bowel Syndrome. Irritable is such a wimpy word for what you get from this. Irritable? Try tantrum, or pissed off beyond belief. One of the first things you discover is how many things have tomatoes in them, and tomatoes can be positively hostile, they are just the right blend of natural acids and compounds to become a gastric grenade. You learn in a hurry how to eat or you learn in a hurry that there are some things that no amount of clenching can contain. I have a nearly encyclopedic knowledge of every public bathroom in a 60 mile radius from my house. One other thing to avoid, sudden altitude changes. Driving through the mountains or flying? You will be looking for bathrooms quite often.
FM patients are thought by many to be an anti-social or loner types, I’m a bit of a hermit myself and I can attest there are reasons why.
* If I’m not reasonably sure my gut is in check I stay close to the home porcelain.
* Interacting with people exhausts me, you ever noticed how you don’t enjoy being around people when you’re tired? Same same.
* I break out in spontaneous rashes so new environments can expose me to something I suddenly find myself allergic to. Then again I can become allergic to something for a while and then just as quick I’m not again.
Exercise is a mixed blessing, everyone will tell you that exercise is essential, and I agree with that, but exercise for the sake of exercise is really high on the kiss my ass scale. I prefer my exercise to have a point, something that I want to do enough to make the hurt of doing it worthwhile. I like long walks, in the outdoors is sort of a problem because heat causes rashes and cold stiffens my joints to the point I can hardly move, so I walk around with my wife in big stores and malls, like the mall walkers you see in the massive shopping centers. Playing with the dog is hard work, he and I play house soccer with a tennis ball and it can last for hours if the dog has his way. Strangely enough brewing is hard work, a brew day consists of bending, lifting, standing walking, scrubbing and generally wearing yourself out.
Perhaps the worst thing of all is the “FibroFog,” it’s a haze that seems to settle over your mind and affects your concentration, your cognitive functions and your memory. When you ask somebody three times in a half hour what they are watching on TV in the other room it gets old, especially when the say “the same thing as I was 10 minutes ago,” and you have to ask what that was. My PDA is filled with notes that sync with my computer so something is always reminding me of things. Not to mention the white board, the cork board and the post it notes that surround my desk. I hate walking from one room to another and not remembering why when I get there, or forgetting what I meant to write down in the time it took me to find a pencil on my desk.
But, the most irritating aspect is ignorance on the subject, especially on the part of doctors. I listened to one that explain he didn’t believe in FMS, he took it rather personally when I asked him if his branch of medicine involved grass skirts and wooden masks. Ignorance is one thing, but allowing preconceived notions on his part to affect the healthcare of others is unconscionable. Medical knowledge is constantly evolving, it wasn’t that long ago that some doctors didn’t believe in anesthesia and cut on patients with no more than a belly full of brandy to sustain them, and when I choose a doctor I want one that is up to date on things, if they turn out not to be, fire them. Doctors work for, and answer to, you, and if your doctor doesn’t do a good job why keep them around?
Finally, watch your medications. There are drugs out there that have the potential to do more harm to you than the condition you take them for. Anti-depressants that have the potential to make you suicidal as opposed to depressed, arthritis medications that can give you strokes, cholesterol meds that can harm your liver, sleep aids that can make you sleep walk and wake up at the bottom of the on the stairs in severe pain after a fall. Ok, the last one is all me, the rest are all a few of the dozens of precautions and warnings I read when I was prescribed something.
So how am I doing right now? Cold weather has set in so I’m stiffer than usual, especially my left shoulder which barely moves but I tortured it through a bottling day yesterday, I bottled up a few gallons of hard cider and that exercised the hell out of it, and the rest of me, especially the bottle capper. I’ve been running random fevers all day, so I’ll lay down a bit and get back up and do things as I feel better. Conventional wisdom says take a day or two and lay around till you feel better, but I don’t like to stay down. I’ve read too many stories of people that didn’t get back up after a few days, its too easy to accept the bed or the couch. We picked up a really nice shiatsu back massager that does me wonders too, a 20 minute nap leaning back against that does me wonders.
So, I’m sore, absent-minded, a little grumpy and marginally anti-social. Same-old, same-old.
© 2008, Tim Boothby. All rights reserved.