This is such a sick joke. I actually thought the last few days, maybe this is the beginning of the end. I think I’m going to get better now… What’s wrong with me? Am I going to spend the next 20 years thinking this is over every time I have a day when I’m able to move? I’m so angry about the tease. I’m so angry about the Catch-22: I can’t move without hurting myself and, if I don’t move, I’m hurting myself.
I had a horrible night’s sleep. Didn’t fall asleep until nearly 2am, had nightmares, awoke constantly, had drenching sweats. Today I feel like a truck hit me. All of my muscles feel inflamed. I’m hunched, I’m hobbling, I’m creaking, I’m wheezing. My spine is rebar, my eyes are embers, my head is a rotten apple.
But my mood isn’t plummeting into despair. It’s just sitting in anger, which, for me, is much more manageable. My stages of grief (denial, anger, bargaining, depression, and acceptance) seem to be mixed up. You’re meant to go from depression to acceptance. I’m going backwards. I was in depression last month, denial yesterday and today I’m angry, so let’s get straight to bargaining: I would give a limb to be out of pain. I would give two limbs to not have this disease. No contest. I will never, ever work myself close to death again and neglect all my friends and family. I will do nothing but altruistic work for the rest of my life, if this is taken away. I could bargain for days.
Now I hope we can just jump over depression and get straight to acceptance.
It’s tough. It’s really, truly a horror. Keep on keeping on and eventually the good days will get more frequent.
I was diagnosed in 2007. Its really hard. The grief cycle is different for everyone. I tend to keep going through different stages too. Even she. I think I have accepted it then something will happen and I will get angry or depressed. It is no fun. It does trick us. On days we feel good, it is normal for us to want to get up and enjoy it and do things we haven’t been able to on a while…and then the next day we pay for it…sometimes a few days..sometimes a week.sometimes longer. I’m still learning to pace myself…its just harder because I live alone.
I really think learning how much to restrain oneself even when things feel “fine” is one of the hardest parts of this illness. I think the only way to figure out what things are too much is to try them a few times and get consistently run over the next day, which sucks. And even then, I find I keep trying again a few months later, thinking surely NOW I can do that. …Nope.
Trying to come to terms with the realities of what I just can’t do anymore has been a huge source of pain and loss, and I’m frequently forced to look at other things that I’ve tried desperately to hold on to up to this point, but I’m realizing just aren’t good for my health.
It’s always a difficult balance between trying to keep enough to keep your sanity and will to go on, but not so much that you’re constantly crashing.
Anyway, long and rambling comment, but in short, I totally understand the struggle and the wish that somebody would just take a limb or two and leave you otherwise healthy. Hopefully someday all of us will get out of this somehow. …Possibly with all four limbs in tact, even.
I hope the good days become more frequent soon xx