Probably the worst thing, after the horrendous pain of ulcers, is the fatigue that comes with Behcet's. There really aren't any vitamins, magic teas, herbs or drinks of any kind that actually help. You're just tired some days, bone-tired, weary tired. No matter how much you've slept.
I was reading about the fatigue in "The Essential Guide to Behcet's Disease" I am thankful that most days, I do have plenty of energy for a person my age (59). Its the days when I don't have any energy that I worry about. For example, last year, I was cooking Thanksgiving dinner for sixteen people. I woke up and knew it was going to be terribly difficult for me to get through it all, despite having done much of the cooking and prepping ahead of time. Somehow, dinner got on the table, but if I didn't have a truly terrific family, I would have never made it through the clean up. My daughter is so wonderful, making sure everything is neat and tidy and shooing me out of the kitchen. So are my sisters-in-law.
Today, I got up and knew it was going to be that kind of day. Took me all kinds of time to get going. I met a friend for lunch, and driving home, the fatigue just settled over me like a shroud. So after writing this, I'm going to take a nap. Ordinarily, naps refresh people, or so I'm told. I've never been a napper. Lately, though, the fatigue just wins and I have to close my eyes. I wish I woke up refreshed. I wake up cranky and more tired than ever, and feeling sorry for myself.
One of the remedies for fatigue recommended for Behcet's are amphetamines: dexedrine, ritalin, adderal. I never thought I would want to take an amphetamine......took my share back in the sixties when speed was a street drug. I guess I remember the jittery, sleepless part of it, and not so much the fun I had dancing at the blues clubs. At any rate, I try to take as few medications as possible these days, and my rheumatologist just adjusted my colchicine upward, so I'm taking more of that.
I am going to ask him about something to get me through those days when my legs and arms feel like lumps of sodden clay. Of course, he'll probably think I'm a drug addict, but nothing could be further from the truth. If your quality of life suffers, you suffer. I have been laying around far too much these days and I need to get up and get moving. Not everyday! I mean, I'm retired, and what's the point of retiring if you can't blow off a day or three? However, I'm married to jumpin' jack flash, who just loves to go places, do things, see people and enjoy life to the ultimate degree. So, I can drag my ass after him, beg off from the social calendar, or get something that keeps me fully engaged in life. I'm choosing the chemical cure. I hope my doctor will agree.
When a person has a chronic illness, they are not the only ones affected. Family members also have to work around your health issues, and I don't blame them for being somewhat resentful. My husband never makes me feel like I'm the whiny burden I sometimes am, and I so appreciate him for that. But it would be nice to be as excited as he is when something fun is happening and he wants to do it.
This is so true, I have the same experience with Behcets, it makes everything that little bit (or a lot) more difficult, even simple tasks. Its great that you too have family around to support you!
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