Tonight has been a really rough night on me. Not because I went out and paying for it, no, it’s been an emotionally draining night. The loneliness of have having a chronic illness and not being able to talk about the scary parts is really isolating. Yes, I have family, a wonderful boyfriend, and good friends. I can’t tell them everything, though, about this illness and about what scares me and what I could be headed for in the future. It would break their hearts. It breaks my heart that my family (including N and friend’s I consider family) has to deal with it alongside their own stress and worries. They watched go from a very healthy, active, young woman to someone needing pretty much constant care and dependent on everyone around me. They watch me walk like an 80 year old woman with Parkinsons Disease. They watch me get dizzy and lightheaded and sometimes even faint. They watch me be in pain all the time and there’s nothing they can do about it. My family has gone through so much sickness, so much pain, that we all start to wonder what it is that we did wrong. What are we paying for? My grandfather, a devout Catholic, has become angry because he prays and he prays and all he hears is bad news. It breaks my heart. So, I don’t tell them everything.
My friends have their own lives to deal with, and their own troubles and things to deal with. They don’t want to hear about my illness, whether they say it or not. I know they don’t, I wouldn’t want to hear that my friend is dealing with so much pain… At least, that’s what I hope the reason is. Having a serious chronic illness that takes so much out of the person makes it hard to maintain friendships. I don’t go out much anymore because I’m always exhausted, too exhausted even to shower a lot of time. When I do go out with friends, I always have to cut the evening short because I feel weak, have a headache, etc., which also cuts short my boyfriend’s night as well. Most of the time, I can’t go out at all. I feel like I’ve lost a lot close friends because I simply don’t have the energy to do things. Not being able to drive doesn’t help either.
The worst, though, is when it’s late and I’m alone and I think about what’s going on. How I have no control over what is happening to my body. How, the fact is at this point, I’m not going to get any better. This is as good as it gets, and it will get worse. Maybe a few months from now, a week from now, or a few years from now. The fact of the matter is that it’s going to get worse. Currently, I’m having problems with my spine. It’s twisted and it only takes one wrong movement and it could paralyze me. That scares me to death.