This week has proven that no matter how hard I try, it's there, lurking around the corner waiting to pounce.
Not only am I in the middle of a fibromyalgia flare up caused by what I can only assume was over working my body last weekend, but the signs of rheumatoid arthritis are fairly high right now, and the idea of dealing with that is just exhausting. Especially since I won't even be able to begin the testing for any of this until I get back from Utah and Colorado in several weeks.
Something else I've noticed is that one illness triggers another. Despite having a decent control on my OCD lately, the pain has caused it to turn it's ugly head and yesterday it became the driver of my mind.
Hours were spent yesterday trying to distract myself from the constant exhaustion that comes with having OCD. It's like having a computer running scenarios in your head non-stop. When stress is an added factor, the scenarios increase and the effort put in to figuring them out is doubled. Despite it all being in your head, you feel like it's all happening right then and there. Adrenaline kicks in, and mixed with typical fatigue you basically just sit there unable to move even though your heart is pumping away like you've been jogging.
I've been thinking about my family reunion and what'll happen if I have a flare up in the middle of it. How will I explain what's happening to me? Why I can barely move, yet I look like I'm perfectly fine. Why I'm in a lot of pain, even if I'm not injured.
A book I bought recently in helping to deal with chronic illness suggests writing a letter, and they even offer a format to copy and change. So I figured I might as well write one out. If anything it'll serve as a reminder to me that I can't do everything all the time. That even on the good days, I should prepare myself for the bad days. And even on the bad days, I should know that there are good days around the corner - somewhere.
I have chronic illness.
It's not all in my head. The pain I feel is very real. I suffer from multiple chronic illnesses, several of which have been diagnosed, and the others are in the process of being tested. They are not fatal, or contagious but are life altering. I can't control how often I feel good, or how often I feel terrible. The hardest thing is knowing that I could wake up tomorrow and feel just fine. It's a lie. I'm not fine. I'll move around like normal, and act like I can do anything. It could last days, weeks, or even months. And then out of the blue with very little warning, it'll hit me and suddenly I'll go back to being unable to accomplish the simplest of tasks without severe pain and a multitude of other uncomfortable symptoms. It's frustrating because if I can be normal one day, why can't I be normal the next? Sometimes because of this factor, I feel like everyone in the world is looking at me like I'm faking it. Making it up. That I'm lazy or seeking pity, when I'd like nothing less.
There's no way to take a pill and have everything go away. It's too much, and there are no cures - just ways to try and manage the onslaught of symptoms that come my way. Some days are better than others. Sometimes I can sleep without taking pills. Sometimes I lay awake at night, tossing and turning despite taking double the recommended dosage of over the counter sleep aides. In fact, I take vitamins every day, and sometimes I might as well have been taking skittles, the good they do. Some days I'd like nothing better than to have my feet rubbed, and other days the softest of touches on my skin feels like someone scratching a sunburn.
If I am functioning normally, it means I am having a good day. This doesn't mean I am getting better, or that I am cured. A good morning can turn into a terrible afternoon. Like someone pulls the plug on the machine that is my body and I just stop working. Aside from the occasional change in weather that triggers a flare up, I have very little notice about when I'll have a bad day. This makes planning events, outings and regular errands stressful and exhausting. I get irritable due to the frustration. I get sensitive to light, noise and temperature. I feel guilty even though I can't control it. I feel like I'm the broken piece to the puzzle that is everyone else's good time/life.
Every now and then a sharp pain will shoot into my side, up my back, down my thigh or up my calf like a hot needle, or en electric shock. On my worst days, a change in lighting or sound will bring a pounding into my head that will leave me curled into a ball, unable to open my eyes. Most days my skin feels hot and uncomfortable, like when you have the flu. When the fatigue hits, my arms and legs weigh three times as much as normal, and it takes every last bit of energy I have just to get out of bed. Sometimes I don't make it that far.
Waking up is difficult. Getting out of bed takes effort and most days it feels like I am three times my age. The muscle stiffness and inability to bend certain joints prevents me from walking normally. I have to lean on things and people, hobble and limp. Long term injuries from a car wreck when I was two don't help. I have little balance, and I trip easily. I bump, drop, slip, spill and have little coordination.
The days I summon strength to get extra special things done takes it's toll and requires days of serious rest. Some times I can attend a weekend convention where I'm walking non-stop, other times I can go grocery shopping, come home and completely crash from fatigue and pain. My limitations are real, and I often am unable to see them.
Another problem I deal with is something called fibro fog. Where my memory and concentration is off. I can remember word for word conversations that I had fifteen years ago, but I'll forget everyday words at the drop of a hat. Sometimes thinking about talking gets difficult and I'd rather just sit and watch a simple TV show (anything that I don't have to pay attention to the storyline is great) or listen to music.
In addition to my physical symptoms, I also deal with depression and obsessive compulsive disorder which have their own set of issues. Normally I can only control one at a time, though on a good day I can trap all three. One will eventually get out and it's a guess at which one it'll be. Depression sneaks up on me upon waking, when I have to think about dealing with the pain and fatigue. Stress will trigger both my fibromyalgia as well as my OCD, and sometimes you'll find me repeating words because that is one of my compulsions. There's nothing you can do to fix me - I just have to let things run their course.
It makes me angry, limits my life in certain ways and I get frustrated easily. I don't like to be taken care of, though sometimes I know I need to be. If I say, "I'm fine," I'm lying - but really, I can only say "Everything hurts" so many times before I feel like I'm just complaining to fill dead air. There's little that can be done about it, so a part of me thinks, "Why even say it out loud?" I don't like talking about some symptoms due to embarrassment or shame. I am twenty-eight years old, and I shouldn't feel this way. Talking about my illness is also difficult because I am constantly afraid of being "upstaged". Because I am only in my twenties I often hear, "Oh you think you have it bad now, wait til you're my age!" Validation is important. It keeps me thinking logically. If I'm constantly told that I shouldn't be in pain, I will agree with you and try to force myself into acting normal, only to suffer the consequences later.
Also, I have doctors to care for me. There are people to tell me what therapies to use, what pills to take and what to avoid. Telling me that I need to lose weight will not help me, because I try. I try to eat healthy, drink water and exercise as much as my body can without suffering. I lost seventeen pounds last year. It's slow, but working. Just because I'm overweight does not mean "being fat" is the reason I am unhealthy. Talking to me as if that's the case only makes me feel even more defeated. Suggesting things do to to help is fine, but I'd rather have an understanding ear and a gentle hug than someone who just wants to fix what's clearly broken.
For those who understand and try to help, I am so grateful. People put up with my sour moods, my limited abilities and my slow movement - you people are saints and angels in my book and you made the bad days much better and the good days wonderful.