I don't feel all that inspired to write tonight, but I feel like these are the times that NEED to be documented, because it is the reality of living with illness. For about a month my body was allowing me to be slightly more active and so I took full advantage by going on errands and beginning to exercise again. Without warning my body decided to shut down again, so now I feel the repercussions of that last month.
The one thing that has stayed constant is the exercise. I take a day or two off here and there, but otherwise it has been consistent. I used to walk but now I utilize my bike. It's refreshing to be out in the clean air, but I know I have to balance things out or else I end up sowing into the Fibromyalgia bucket and it really does like to collect my energy, as limited as that is!
Since the weather is beyond freezing right now (which I love, love, love!) my body has decided to start having spasms and cramping everywhere again. This time of year is not Fibromyalgia friendly in the slightest. My skin hurts more then usual. Last night the sheets felt like they were stabbing my legs, and today I had to remove my necklace because anything touching me feels horrendous. Even my hair is hurting. It's pretty insane what this illness does to a person. It's right up there with cancer in my book, but not as recognized and therefore, written off as not as dire.
Trust me, it's dire.
They say it's not fatal, but I choose to disagree. EVERYTHING is impacted. Mind and body.
This week I have a first time appointment at a Rheumatologist. I am dreading it. Unless you've been to dozens of doctors within the span of a few years, you may wonder what the big deal is. Well, one is the appointment itself. Getting dressed in something other than pajamas, riding in a car, having to re-explain your entire history- including EVERY medication, EVERY ailment... it's a lot. I used to enjoy going to doctors appointments.... but after these last few years of being dismissed, patronized, not believed, and discredited, I just don't have it in me to have faith in the medical system. I am appreciative for it, and I have maybe 3 or 4 positive doctors experiences, but for the most part, an appointment with a new doctor causes palpitations and dread. I absolutely cannot stand when someone says not to stress or that it'll be fine.
DUH.
Obviously. You know, those of us with Fibromyalgia are pretty damn strong. You think we complain? Ha! You don't know the half of the half of what we go through every single moment of every single day. So, to tell us how to feel about OUR disease is maddening. When you go through it yourself, then you get to have an opinion. It sounds harsh because IT IS harsh.
Anyway, I'll go and give my extensive history and be assessed. This is necessary for my SSI appeal, and I need regular care with a specialist versus going to the clinic. With all of my ailments and especially with Fibro, a regular doctor does not suffice. The most disheartening thing is that going to a new doctor will not do anything. That isn't defeatist. I'm being honest. I spent years going to doctor after doctor, gathering diagnoses along the way, and being put on different medications. Now, I am at a point where I am on what medications aid me, but there is still no cure. So, a new doctor will only be affirming for like the 4th time that I do have Fibromyalgia, she'll press all my tender spots, she'll tell me I need to exercise (which I do but they'll say it anyway), and they'll tell me what they do know... which is so incredibly limited that it is almost laughable.
I heard somewhere that Rheumatologists are starting to deny patients with Fibromyalgia. The reason being that this illness stems from Neurological issues... but Neurologists are not taking us on yet, so we basically are lost in the between place. It's so infuriating!
I am praying for that marvelous day when they will be able to detect this disease with a blood test, with a scan, with anything concrete, because sadly, that seems to be the only way the world will take us seriously. There is an article I read that says that a brain scan showed evidence. Here is the link: http://www.mysquirrelbait.com/brain-scans-detect-fibromyalgia/
This isn't a la la post about how everything is oh-so glittering with sunshine, but the reality that Fibromyalgia is completely rude and being ill sucks.
Was my progress real? Yes, it is real. I have come a long, long way from that broken, beat down place. My moments of optimism are genuine, but these dark moments are just as imperative to feel, explore, and grow into and out of. It took me ages to understand that being in a bad mood because I am sick is okay sometimes. Hell, if others get their knickers twisted after a day or two of sickness, then I believe we are entitled to a few days of grumpies, my fellow Fibro warriors.
I have absolutely no energy. A shower a day is a huge task again. Exercise is NOT a cure to all of you who think it is. I am being active despite the feeling like slime, and guess what? I still have Fibro! Gasp. My neck hurts to hold up, my skin feels like it is burning and being stabbed, and all I yearn to do is sleep.
BUT when we feel like that, we still do what we need to. We text people back, we watch a tv show with a loved one, we shower, we do laundry, we sit at the dinner table, we make phone calls, we do paperwork, we carve pumpkins, we take pictures, we force ourselves to eat food that tastes gross.
We do this because we are champions.
Truly.
