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I have lived with chronic illnesses all my life. Because of that I actually have a hard time relating to how other people see things in the world and why sometimes they get upset with me not being able to “keep up” in certain areas. My lifestyle and the things I do are so ingrained into me that I don’t really think about them. And I don’t really tell people about the illnesses or explain them. I don’t even think that I have ever explained it to my kids’ mom.
I live with asthma, which I don’t really think about. People live with that all the time, and I just simply explain that there are certain things that I can’t be around, most especially cigarette smoke. And that when I get short of breath I need a little break. And then everything is usually okay. But the really disabling one is fibromyalgia. Fibromyalgia is the one I wish I didn’t have and that I could easily forget about. Sometimes I do. When you live with constant pain, you often forget that other people don’t. And you really just continue to do things as much as you can, dealing with the world around in ways that make it easier to cope, and make the pain a little less. With fibromyalgia, exercise and diet are very important. And so is sleep. In sleep our bodies regenerate and heal. If I don’t get sleep or if my sleep patterns change, I can get into such pain that it is debilitating. And I sometimes forget about this, as I manage my illness very well. I exercise more than most people. I eat healthier than most people. And I still feel pain every day. My kids have gotten so used to it that they, at the ages of two and four, always ask if I am sore before they try to play with me or ask me to pick them up. They have never asked why. For them it is normal. I get very sore working a desk job. Inactivity is a killer with fibromyalgia. But I work at a desk all day. And the health and safety people tell me that I should get up and stretch more often. If I did, I would be unable to get anything done. I get up or stretch in some manner about every 15 minutes, just so that I can move at the end of a day. Sometimes more. And I love exercising, especially stretching. I am much more flexible than most people, regardless of age. But if I don’t do a full stretching routine at least every other day, I will lose a large amount of flexibility and become very sore. And it can take weeks to recover from just one missed routine. Sometimes I will do it in sections, stretching my legs in the morning and stretching my back and arms in the afternoon. I take the opportunities as they are presented. I mean a full, hard stretch! I will sit on the floor or put my leg up on a table, whatever. I have had this since I was very young, probably before I was a teenager. It took countless doctors until I was 25 to receive a diagnosis. Before that they all said it was in my head, and I was imagining things. I even had one doctor who asked me to move (lifting my leg back) until it caused pain. I barely moved it. And he stated that I just had weak muscles, and that was the cause of my pain. He didn’t test the strength of my muscles, just where the pain started. Had he tested the strength, he would have found that I was much stronger and much healthier in terms of fitness than 99% of the population (at that time). I was only 19 then. By then I had pretty much lost my belief in the doctors, although something drove me to keep trying. I simply had to know why I hurt all the time, when other people told me that was strange. Living with this has been a huge challenge. I can fall asleep quite easily most of the time. I go straight into REM sleep. But it’s always a light sleep that I am easily woken out of. A noise, a change in air movement, lighting, or even if I fart, will wake me up. I sleep best in a very dark room, with no noise whatsoever. And getting that is almost impossible. I plan to make my basement into my bedroom, once I can develop it. It’s darker down there. And I can more easily cover up the windows. I know that people will think I’m strange. But it’s something that will help with my health. Every day I have to plan. I plan the exact time it takes me to get ready in the morning, and I always allow a little extra. I know that I could get ready for work in fifteen minutes on a good day. That would be a day when my pain is at a normal level so I am functioning like a normal person. But when my pain is at a higher level, I tend to get forgetful. Sometimes I actually forget to eat and will end up skipping a meal entirely. It really helps if there is someone around to help me not to forget things. And I get frustrated when I do forget things, because it always ruins another part of my day. For example, I forgot my tools for my silversmithing class that I teach tonight. This is going to cost me at least an extra hour out of my day. This last week has been tough that way. I’ve been trying to get the time for a haircut. But with these kinds of things happening, I doubt that I will remember to find time for another week. How many people have to worry about something as simple as a haircut? I’m often asked how I can’t find the time to do something. Well, this explains it, at least in part. Being forgetful, because of an illness, really sucks. And for me that is worse than the pain. I’ve learned to live with the daily pain. Being forgetful can really set me back! And I sometimes worry that it will cost me a job. But that’s also part of why I am working towards 100% self employment, instead of part time self employment. I need more flexibility in an employer. I have an extremely hard time working an eight hour day. Not just because of the pain in sitting in a desk. I can’t focus. I get sleepy. It’s not the total hours that are difficult. It’s the all at once. Our industrialised work schedule isn’t conductive to accommodating what I need. How can I explain to my boss that some days I just need to take a nap in the afternoon or go out for a walk? If I don’t, I am completely useless, mentally, and can’t get anything done. But I push through every day, regardless. And I hope that I am productive enough that I can keep going and advancing. So far it has worked. But I’m not sure it’s going to keep that way. And I have relatives that don’t believe me at all. It doesn’t matter what I tell them. It doesn’t matter what I show them. They just can’t get it. And they wonder why I am harsh on some people for their lack of planning, lack of motivation, and for abusing their bodies and souls. I am grateful every day for the life I have, and that it isn’t worse. At least I don’t have cancer, which would kill me. Or lupus, which is supposedly even more debilitating than even the worst fibromyalgia. And I’m harsh on some people who have what I do. I’m harsh on them, because they don’t take care of themselves. They eat poorly, they don’t exercise, and they wallow in self pity. I know that most of the people I know have no idea about my chronic illness. If they read this, then they will learn about it. Maybe my mom will start to understand it better. Maybe my grandparents will start to believe me. That would be nice. But it doesn’t really matter. I’ve already dealt with it. It won’t change how much I love them. And I hope it won’t change how they love me or respect me. Every day I plan. I plan my day, my future, I write down things in a note book that I don’t want to forget. Sometimes I lose my notepads. And that is a great inconvenience. Sometimes they will show up in the oddest places. But I get used to it. At least there is occasionally something still useful in there, such as an idea or a reminder that hasn’t expired. What I do to deal with my illness is a crucial part of who I am. This is something that is so ingrained in me that I never, until today, actually understood some of the differences between what I go through and what it’s like not to have to deal with my illness. I read something that explained chronic illness to someone without it. And it made me understand what it’s like to live without it much better. Yes, I would like that. But more than that, I would simply like those close to me to understand. What I read is called “Spoon Theory” and I recommend everyone to read it.
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