This is such an excellent article…I relate very deeply to Michelle’s words and feelings. I was certainly never any kind of world class athlete, but I used to pride myself on fitness. I was once heavily into martial arts (really gung ho). I was once a soldier, and good at it. I still ‘train’ in the pool six or more months a year, treading water vigorously for hours. But even so, I often can barely make it to the bathroom and sometimes go days or even weeks barely leaving my bed, only to fight my way back to fitness afterwards each time.
In the summer, especially, I am tan and lithe, glowing with what looks like health. I am fit but chronically and incurably sick, but no one can see this; I fight skepticism and outright disbelief. Once, I went to the store to get a bunch of those foam noodles to use in my pool. Others line with me and the checkout clerkengaged me in small talk. One gestured to the pile of blue and pink noodles in my cart and asked if I was a physical therapist. I stood there, tensing my legs and core so I would not pass out, fighting hot flashes and nausea, looking muscular and trim and fit in my yoga top and shorts, skin aglow with the sun…and I answered, “Nope. I am the patient.”
I, too, have CFIDS and NMH/NCS, like Michelle. I also have EDS and POTS and MCAD and a whole list od comorbid crap…seems those of us cursed with this sort of disease never get off with just one or two diagnoses. I know what she felt like when Michelle describes episodes and symptoms. I am moved by the support of her teammates…we should all have a ‘team’ like that! Our doctors are supposed to fill part of that role, but more often than not, we struggle for diagnosis, for treatmentfoams we are judged constantly.
On good days, I will often park near the back of the lot and enjoy a chance to walk a little, with my cane(s). But more often, I make use of my handicap placard. You would not believe the looks I get when I emerge from my little red convertible, tan and fit looking, a cane the only visible sign that anything is amiss. People glare. If looks could kill…yanno? I have learned to ignore all that, but once in a while, it niggles at me a bit in spite of myself. How could they possibly know that standing…the mere act of standing…sends me into severe tachycardia and puts me at high risk of doing a world class face plant into the cement? They can’t know, even when I wear my POTSy Girl tee shirt.
A quick excerpt from the article:
Michelle had conquered adversity most of her life. It had to be hard to ask for help.
“It killed me. It’s changed me totally, as a person. I was someone who held her emotions tight, nothing hurt me. I said to myself, J can handle it, I can do it myself.’ For me to have to say to one of my good friends, ‘I can’t do this on my own, I can’t make myself better. Can you drive to the store for me? I can’t do it,’ killed me.
“What I’ve learned is that, by opening up and letting them in on your struggles, you’re helping them, too. They see you struggling and they want to help. By saying no or not asking them, you’re slamming them in the face and you’re hurting yourself, too.
“My teammates ask me, ‘what can we do for you?’ I say, ‘if you’re going to the store, ask me if I need anything. If you’re going to a meal and you notice I’m not there, bring something back.’ They do these little things that make a huge difference. They call me and ask how I’m feeling. It’s like, ‘Oh! They remember me!’ Because you feel so alone at times, and that’s frustrating in itself, to be alone and to feel that bad and then to be on the road and feel that bad.”
Read the article here: CFIDS. Read it. Share it. Become part of the solution.
Like this:
Be the first to like this post.
