Friday, May 4, 2012

How To Learn What Fibromyalgia is Like for Me

Hi there. Miss me? Because it's been a while. I lost the little bit of writing mojo I had worked up . I couldn't think of a worthwhile post that didn't have to do with my body issues. I don't want this to be a blog all about my issues, but this is a big piece of who I am. I try not to let it define me, but it does color other areas of my life. Anyway, I am who I am, and my body is what it is. I'm working on it. It's a work in progress just as I am a work in progress. So, here goes. 

How To Learn What Fibromyalgia is Like for Me:

1. Walking (on a “good” day)-
Sprain your left ankle severely. Have someone beat or dislocate your right knee (might I suggest Tanya Harding?). Try to figure out which side is worse, so you can limp properly. Put on a set of ten pound ankle weights. Put on a fanny pack full of rocks, and turn it so it hangs over your bum/fanny. Find a child or small adult (85-100 lbs should do) and carry them over both shoulders. Now go for a walk on a slight incline. Try to keep up with a healthy person who is power walking. Try to breathe properly and not pant like a hot canine.

2. Walking (on a bad day)-
Do the same as in number 1, but add some jumping jacks before you walk to make the knee and ankle worse, add two more sets of ankle weights and another rock-filled fanny pack. Paint your shoes with wet cement. Let them dry, then put them on. Carry a heavier adult (maybe 120lbs) over your shoulders. Walk up a steep hill.

3. IBS-
(This should be done in freezing weather, so you can sort of mimic the chills) Have someone randomly “spike” your food with a strong laxative, without warning you when or where this will happen. When it suddenly hits, repeat number 2, (no pun intended), take a shot of everclear (so that when you're outside in the cold, you'll feel hot inside and cold outside) and try to get to a public restroom down the road, without drawing attention to your desperate condition or having an accident.

4. Migraines-
Have somebody boot you in the back of the head a couple of times, wearing steel-toed boots, then punch you in the forehead and each temple. Have everyone around you increase their speaking volume, and turn up any radios, computers, tvs, etc. Close your eyes and rub them hard to make “fireworks”. Now squint and try to continue in your normal activities.

5. Depression- Do all of these for years, while trying to care for your family, keep your house clean, hold a caregiving/CNA job, spend quality time with three children and a spouse, and maintain your positive outlook and sense of humor. Try explaining this entire experience to someone who only understands a totally foreign language. Try to make it clear to them that you are not lazy, self-pitying and weak, and that you really are doing your best. Try not to scream when they tell you what they think is your real problem, or what you should do to make it better, or share any other presumptuous, uneducated little morsel, which you, having dealt with this for years, have most likely already heard of and/or tried. Try not to take it personally, or be hurt or offended by it when people come into your home and judge you and turn up their noses because your home isn't up to their standards of orderly perfection. Try to be cheerful and energetic.

6. Fibro Fog/Brain Fog- While doing all these things, try to think straight, speak clearly, and remember words. With forty-seven people of varying ages and IQ's speaking at you and demanding your immediate attention. Try not to forget anything. Names, dates, numbers, plans, etc. Form complete, intelligent sentences without having to pause and collect yourself.

Now, you may have the general idea. Maybe.

I don't share these things to gain pity, or to cause anyone to feel guilty. I'm trying for understanding. I'm trying to explain something that is considered an "invisible" illness, so that maybe folks will not be so quick to judge. I tried to make this kinda lighthearted, but I think I failed in that. But oh well. Hopefully, it will get the point across. 

I have learned to laugh my way through this. Here's a good post about how laughter can help.
And, here is another post about what Fibromyalgia feels like.

"Life is pain, Highness; anyone who says different is selling something." 
Wesley/Man in Black from The Princess Bride

Thanks for reading.

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