Like this year's awareness campaign says, you probably heard the diagnoses and went: "sclero-what?" Or in my family: "es-sclero QUE?" And when it was repeated slowly...scler-o-der-ma...you shook your head yes in agreement, and still didn't know what the hell the doctor, or your friend/family member was talking about.
If you were the one that was diagnosed, you probably thought:
Thank God, at least it's not cancer.
And then, as the doctor began to explain what could potentially happen to your skin, lungs, esophagus, kidneys, hands, feet and body...and as you began to live with the never ending pain, fatigue, skin tightening and miserable medication side effects you begin to think:
Dear God, why couldn't have been cancer?
At some points, the thought of being diagnosed with something a bit more predictable. Something more people understand and support. Something with the hope of remission or even the certainty of death is all we really want. No illness is easy, but at times, being metaphorically thick skinned while literally getting thick skinned can be impossibly difficult.
All we want is to catch a break. One day off from the pain, the pills, the fatigue and the discomfort. But those breaks are few and far between. We experience just as many good days as bad, if not more of the latter than the former."Look what this disease has done to me! Changed my body so much that even my eye shape is different. Sometimes I may not act like it but I go through A LOT on a daily basis. I don't want a pity party, I just want the world to know about a special group of people who smile in the face of adversity and conquer whatever may be in their way."
If we want to make the most of our "good days," we have to learn to how to balance our free time between social gatherings, personal and household responsibilities, and rest.
Pain in our joints and muscles and all over our skin comes with the scleroderma territory, but sometimes a symptom even more debilitating than the chronic pain is the chronic fatigue.
Jovana- An amazing Sclero-Warrior/San An Support Group Leader
"My fatigue is like the heaviest 'ball and chain' pulling on my joints and lungs. It is never ending."
Chronic fatigue is: sleeping 12 hrs, waking up and not feeling at all rested.
Chronic fatigue is: showering only when you really have to (or smell) because you know that showering will take all your energy
Chronic fatigue is: patting yourself on the back for making it out of bed and onto the couch for the day
Chronic fatigue is: taking 2 hrs to get ready for work/an outing because every activity requires a 10 min break afterwards (yes, even brushing your teeth, getting dressed and putting on make up feel like a workout)
"I want to do things but just getting up & showering & getting dressed can be so tiring. That it is not worth the trouble."- Michele, Indiana
"My fatigue at it's worst feels like someone plugged a vacuum up to me and sucked out all of my energy."- Wanda, Montgomery, AL
Before sclero, I was definitely a doer. A go getter. My schedule was non-stop. Since diagnoses, it's been very hard to adjust, but I know that if I want to live a full life I have to give my body what it needs. And, to my dismay, it needs more rest than the average person.
"EVERY inch of my body aches. My skin feels like it's going to split wide open."- Trish, Waco, TXI recently sent out a survey to find out what are other scleroderma fighters saying about their chronic fatigue and I included some of their quotes throughout today's post. But there were so many, here are a few more:
(How would you describe your chronic fatigue?)
"Some days, even resting makes me tired."-Jacob, Humble, TX
Others described the fatigue as "running through their veins," "bone weary," and "life canceling."
So, I just ask for one thing, don't say you envy my ability to take naps in the middle of the day. Because more often than not, it is out of necessity and not desire. I work from home because I have to, not because I really want to. I would much rather have the energy to do things...anything..but sometimes I just don't. And, if I cancel plans because I say I'm tired, 95% of the time it's true..and now you know what kind of "tired" I'm talking about. So, don't take it personally...just try and understand.