We’ve all heard this phrase, and it’s a particular bug bear of the invisibly chronically ill. So what does ‘sick’ actually look like?
You can be obviously physically disabled, e.g having a missing limb, but you’re not ‘sick’ as in unwell and you can still function pretty well in everyday life, albeit with a few adaptations. The Paralympics showed just what physically disabled people are capable of, I didn’t see anyone with M.E//CFS/Fibromyalgia compete though, and there’s a reason for that.
So how else can you look sick? Not having any hair? Plenty of people have alopecia and have no hair and they’re not sick.
Celebrities with full on flu still go on chat shows, dosed up with flu meds and once they have their hair and make up done, they look the picture of health, even when they feel like death. They don’t look sick either.
I’m very tired today, body feels weak and shaky, kind of like when you get the flu. Hands and wrists are moderately painful. The “knot” where shoulders, neck and back meet is throbbing, not super painful because I am laying down but it will if I do too much. Eyes have been really dry.
Shoulders,neck and upper back have been really bad over the last few days. Hips have been extremely painful. Knee’s and ankles a dull throb. Ugh. On day two of Naproxen (500mg twice a day), hopefully in another couple days I will feel better.
I’m back from one of my usual breaks. No matter how hard I try I can’t seem to write EVERY day and stop for months at a time in a pretty regular cycle. My most recent discovery is that really warm weather makes me really sore, the high pressure doesn’t get along with my joints. Still not as bad as when the weather turns crappy like it has been the last few weeks. LOTS of rain, seems Mother Nature is making up for the dry summer. With the cooler temperatures the pain and stiffness, particularly in my hips, feet, shoulders and hands. Certain joints in my feet have been giving me grief. The Raynaud’s Phenomena in my feet has gotten steadily worse, my toes are pretty much icicles all the time now. Drives me bonkers, I hate it. The cooler weather has also woken up the pain in my upper back, so I’ve been feeling pretty sore and tired and frustrated. There’s been no change in medication or anything like that. My body has almost completely reverted to it’s super food sensitive state. In December I will be going back to see my Rheumatologist, so I’m looking forward to that. Psoriasis is getting more noticeable on my scalp and eyebrows, still very mild though all and all.
You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know. I do have information that you can’t…
Left knee Right knee Left foot Right thigh Here are some pictures of my mystery bruises on the knee’s and thighs, the one on my foot is a bruise from wearing a pair of shoes that was a wee bit too big. Shouldn’t get bruises from that. Posted from WordPress for Android
Things have been busy. The Little Man is walking and getting into everything. It’s also summer which means camping trips and such. I was feeling really good with all this heat. I did my best not to complain because it got REALLY hot REALLY fast. Something has gone funny under the surface though. It’s still warm but things feel broken again. I am seriously thinking about investing in a barometre so I get some warning at least. The burning pain of the infamous “T-Zone” has been mild. Hands/wrists, hips, ankles and feet have been bad. The second joint of my right big toe, the Medial Cuneiform, hurts A LOT and makes walking an interesting adventure…here’s a picture:
My shoulders have been pretty bad this week too. My right one is particularly pissed off, I did something to it picking up the boychild last night. I’ve been experimenting with only taking my afternoon dose of Lyrica if I feel crappy. Not sure of that’s affecting how sore I’ve been lately or not. Either way, it sucks. The Psoriasis on my head is getting pretty bad, I can actually see the red scaly spots now.
Woke up in a lot of pain this morning, an 8-9. Bad stiffness, pulsing body pain, particularly bad in my hands and wrists. I’m exhausted emotionally and physically. I feel empty, drained. But I am taking great joy in watching my son crawl around the house, learning new things, surprising me with his comprehension. I asked him if he wanted milk, he nodded his head yes. I had suspicions that he was starting to understand what that meant, it’s really neat to actually see it in action though.
The reason I am feeling the way I am today is due largely in part to my day yesterday. My cousin, a cousin who I loved very much, was killed a couple weeks ago while operating heavy machinery at work. He was a young man with small children and a very amazing human being. His funeral was yesterday in Courtenay. Getting there involves a two hour ferry ride and a two hour drive both ways, 8 hours of travel. And then a very moving ceremony. While it has helped me begin my healing process, my acceptance of what has happened, it was exhausting and extremely hard for me.