I open the window for a new post and get ready to type....
And my body says "uumm... No." (*more on this in a moment)
Or I have the words floating around in my brain but when i go to right them down my brain says "see ya later, alligator" and poof! It's all gone.
But tonight I think I may finally have it together enough to write a post, finish a post, and actually post it. *crossing fingers.... well, trying to*
Ok, so I log on here tonight and start looking at the few drafts I had started. Here is what I saw:
- an empty post entitled 'Being fat is killing me.' with no entry.
- a post in which the only words are "Today I am".
- the following entry in BLUE...*
I hate days like today. When my mind is so stimulated and active but my body does NOT want to cooperate. At all. I am not just sore and tired. I am exhausted and every cell of my body feels like it has been run over by a truck. I wish that I could just sleep my way through these episodes. But in this state it hurts to even try to sleep. It hurts just being. And my fingers feel fat and fumbly. I am weak all over, my muscles shake just trying to do the simplest of tasks. My arms and legs feel like they are being weighed down with those lead aprons you see in X-ray rooms. I see flashes of bright light in my peripheral vision, which indicates that I am headed for a migraine. The weakness and muscle fatigue is probably my least favorite part. Writing this, I am laying in bed using my iPad on a cushioned lap desk. Sounds pretty comfy, right? Yup. Except, my arms are so weak that I have to take a break from typing after almost every sentence. And they are very shaky as I try to type. Trembly. I have the sensation of adrenaline rushing through my arms, sometimes legs, too. But I am not frightened or having a panic attack or feeling any of that in my torso as one would expect if it were - palpitations chest pain, tightened guts, sweats - none of that. It's only in my limbs. It's a burning type of sensation and is sometimes accompanied by paresthesia (pins and needles sensation). Tripling my dosage of Neurontin has helped lessen the frequency and duration of these episodes but not taken them away completely. And between all the meds I take we still have not come up with adequate pain control.
I wish I could give you my body for a day so you could feel what I feel. Who am I talking to, you may be wondering. Well, everyone, I suppose. The doctors who don't want to write prescriptions for pain medication, the doctors who don't quite believe in fibromyalgia. (Neither does spell-check, apparently. *gives the finger to spell-check*) My friends and relatives who don't understand what it is like to struggle with chronic pain and fatigue. The people who stare and scowl, because I am obviously too young to have any health problems so why do I need handicapped parking? Why do I only use a cane sometimes? Why could I walk all over creation last weekend but can barely get out of bed today? I wish you could really know how fucking hard it is to be trapped in a body that doesn't do what you want it to. Or does things you DON'T want it to. Like flailing arms and legs. Knees that buckle and give out without warning. Hands that drop things, eyes that sometimes get too blurry to see straight, or feel like there's
We now return you to your regularly scheduled program.
Um, what? No really, McMuffin?? WhereTF did that come from? How did I just drop off in mid rant?? Or was I saying that I felt like a McMuffin? Did I mean I wanted to eat a McMuffin, or that I wanted to be a McMuffin? O-o
Things that make you go hmmm....
And the other 2 drafts, well, it's not too hard to figure out what was on my mind. Feeling trapped in a sick body. being afraid, feeling loss of control, wondering what my purpose is, why I am here, why I should hang in there. Sometimes it really is a an immense struggle. And physical and mental health really impact each other. When your body hurts and hurts and hurts, eventually your mind hurts along with it. And vice versa.
At least it's true for me. In fact, I had a real light bulb moment today about my mental health. I realized that I really do have a distinct cyclic pattern where I'm good for about a year and then I start going downhill. This is usually followed by a few years of roller-coaster-like fluctuations in depression/anxiety/PTSD symptoms, as well as in physical symptoms. I wonder if my therapist has noticed this....
Anyway, these days I am learning to eat healthier, seeing a nutritionist, and have joined a weight management program at a local hospital. I am learning to exercise. I mean, I know how to exercise, I just never cared for it. When I was a kid it was different. I played and ran around, played soccer, did gymnastics and danced, roller skated, rode a bike, skate-boarded, and swam every chance I got.
And that's when my body said "Fuck You" very loudly and the visits to the various doctors began. And ever since then my body hurts. All the time. There is never a time (short of the few times I've been hospitalized and given morphine) when I do not hurt at all. And I realize that part of this is my age. I'm almost 40, things are starting to break down. I get it. But it's more than that. Years of neglect and abuse is now catching up with me... on top of the chronic pain I've been in for the last 30 years. So now I am eating differently, learning to move, and trying to find my best self every day. By that I mean that every day is a new day to remind myself that I matter and I deserve to be taken care of properly. It's hard. Very hard. When you grow up feeling worthless, with no sense of worth or purpose, how do you teach it to yourself as an adult? I never really had a good role model in this area. Everyone around me struggled with food in one manner or another. So now I am having to teach myself and I have to say I am a difficult student. LOL But I'm keeping at it and making strides. My starting weight last holiday season (2012) was 253 lbs. which I believe is my heaviest weight ever. Recorded, at least. I am now down to the early-to-mid-230's (accounting for fluctuation). My next big goal is to break 230. After that 200. And so on.
And I've hit the wall.... I guess I'm done writing for tonight.