National Invisible Chronic Illness Week: How my Illness Affects my Morning

How I generally feel

I found out that this is "National Invisible Chronic Illness  Awareness Week".  To quote a friend, "At my house, every week is invisible illness week". Like her, I decided to use my blog to participate in raising awareness.  Today, I was going to write about how my invisible illness (fibromyalgia) affects my life at home. Then I decided that was too much and decided to concentrate on one part of my day; the morning.

I truly hate mornings. I think that all mornings should not begin until at least noon. But I'm getting ahead of myself

The thing about fibro is that sometimes I hurt. A lot. The pain varies but is generally pressure/nerve and joint related. What that means is that there are moments when I feel like my skin is on fire. The only way to describe it is that it feels exactly like you've fallen onto the sidewalk and skinned your hands. That same sort of burny feeling. Only it is under my skin and all over, not just on my hands. It's so bad sometimes that I really wish the world was clothing optional because wearing clothes hurts. A hug from my son hurts. Picking up things to put them away hurts. Laying in my bed hurts. Sitting down hurts. Standing up hurts because not even the bottom of my feet are spared.

Then there is the joint/muscle pain that really makes me want to cry because frankly you kind of have them all over your body. I think it is probably not right to be able to feel every joint as it articulates, every bone as it moves, and every muscle as it expands or contracts. One should simply not notice that sort of thing. It's just wrong. On top of all that is the fatigue and fogginess that comes from dealing with the pain, and not being able to truly rest because of the pain.

For me, the pain ebbs and flows. Praise God I have more good days than bad, but the bad days are truly not what I define as fun and sometimes these "flares" last for weeks on end until I feel like I am swimming in a salty sea with my raw nerves exposed, my muscles and joints protesting every stroke and so exhausted I can barely think my way out of a wet paper bag with directions on the side saying "KICK".

When I am feeling good, I wake up get dressed and proceed with my day.

When I am in the midst of a flare, I ascend slowly from a murky place that pretends to be sleep but isn't and wish I could levitate because (a) I slept poorly and I am exhausted, (b) I know I am going to have to move and (c) moving means I also have the great joy of standing on my feet (remember that pressure thing? Yeah). Then I move and the first words out of my mouth are generally, "Ow, dammit, pardon Lord," followed by me staring at the floor because next I have to stand up and walk to the bathroom. Sometimes I just lay back down and have a good cry and then start over again. LOL! Then I get up and mince to the bathroom, scaring my dog all the way because I'm muttering "Owowowowowowow" until I can sit down again. Usually by the time I get to the bathroom I'm not hanging onto the dresser and wall and I can straighten my right arm and flex my right hand without wanting to slice it off and my ankles have quit screaming at me. Sometimes my right ankle is swollen sometimes it's not. Just depends on how pissed it is at me for making it move and support me. Also during a flare, my hands feel like they are swollen to the size of small hams and are very tender although they look perfectly normal. My fingers don't hurt but thy feel tingly all the time and I'm constantly rubbing one hand over the other to check for the swelling I feel but no one can see.

You think I am kidding? I kid you not. You're my favorite goat. ~rimshot~

I try to keep my house "company ready" but I don't much go in for company because I honestly never know when I'm going to just poop out and need to get prone someplace. If I didn't feel much like cleaning the night before, I'll generally tidy the kitchen and make coffee. I can't stand a messy kitchen and coffee is an excellent vehicle for sugar, vanilla and whipped cream. I also eat something. Or try. Food in the morning makes me ill.

While the coffee is making I walk my dog because my doctor says I must exercise. When we get back, she drinks some water and I collapse on the floor and wish I was a jellyfish or something else that doesn't have muscles, joints and nerve-endings. I feel like one so I should be one, yes? Yes. God does not listen to this particular prayer of mine. I'm sure He has His reasons for not letting me become a jellyfish. He has not, however, seen fit to enlighten me.

It takes a few moments to get functional again but the exercise does help (if it doesn't throw me into a full blown flare, which doesn't really matter because I have to be functional at the very least no matter what; I am a mom after all, and I have a job). The exercise actually numbs me for some reason. If I do it right, I end up feeling...distant...all day but the pain is equally distant. I tried running but I stopped that nonsense and went back to walking after I couldn't climb the stairs without having to stop and breathe on the way up. I'm also sooo tired.

Showers hurt during a flare. The water feels like tiny pelts of gravel. If I don't shower I will stink so I shower cos I can't abide stinkiness, but it hurts like rolling in caltrops.

Getting dressed is fun. The worst part is unders. If I've walked hard enough, long enough, I'm actually numb enough to get dressed and slowly acclimate to my clothes touching me. Otherwise I experiment with new and exciting ways to not swear. Weekends during a flare mean my softest pjs, a tshirt and fluffy socks unless I leave the house. Weekdays mean I have to wear real clothes to work.

So that's my morning. Like I said, I have more good days than bad and for that I am grateful and feel blessed.

Lord have mercy on me, a sinner.

Relevant Reading
National Invisible Chronic Illness Awareness Week
Fibromyalgia
Morning Coffee: National Invisible Chronic Illness Week