Chronic illness and fatigue- It’s more than being tired

I always laugh when I see a list of Fibromyalgia or Lyme symptoms. Usually one of the top symptoms is “moderate or severe fatigue.” Fatigue isn’t exactly humorous but I find that it is so understated when listed as a symptom it’s ridiculous. Moderate or severe fatigue is listed like it’s no big deal, when in reality, your energy level affects every single thing you do.

Fatigue is my #1 most debilitating symptom. There are very limited things I can do about it. I have fantasies about what it would be like to stay awake for a normal time span. I’ve always needed lots of sleep, but chronic illness has made my sleep needs even worse.  So often I hear things like “why can’t you just get up and get going?” or “You would feel so much better if you just got up off the couch.” Believe me, I would be thrilled if forcing myself to get up or forcing myself to exercise made me feel better, but it doesn’t. I’ve never had endorphins, even when I was healthy, I definitely don’t have them now!  Seriously, sometimes I want to kick people who are happy after they exercise because of the unfairness of it all.

There are some long term solutions for dealing with fatigue, like attempting to get more sleep or taking more vitamins (because we just can’t get enough!) There are also short term solutions, namely caffeine, which as much as I love my cherry coke,  isn’t exactly good for you and is counterproductive in the long run. Then there are also managing technics, which I have found to be my best bet. They don’t work as often as I would like them too, but it’s helped me to get by the last couple years.

#1 Schedule Schedule Schedule. Don’t overload yourself. Spread out the things you know you have to do. Avoid procrastinating so you don’t end up rushing around at the last minute trying to get everything done and wasting all your energy.

#2 Say No. This is probably the hardest one for me. I like to help people and I am a responsible person. Those two together make a deadly combination. I am saying no more often even though I hate doing it. I’ve also been dropping some of the extra things I was involved in because I felt they were damaging my health and weren’t tailored to my needs.

#3 Let go of the guilt. Fibromyalgia sufferers tend to be type A personalities. I’m not exactly type A, but I can be a bit obsessive about cleanliness. This was pretty rough when I got sick and my house could no longer be spotless. I’ve had to learn that if I keep a spotless house, I’m not going to have energy to do anything else. I’ve had to learn to let a few things go so that I can enjoy myself once in a while. If my house is a little dusty, it’s not going to kill anyone.

#4 Listen to your body. If you are so exhausted you can’t get out of bed, then don’t get out of bed. It’s easier said than done of course because most of us have responsibilities, but do the minimum you have to do and then get some rest. When I’m beyond exhausted I lay on the couch and read books with my son. If things are really bad, I’ll let him watch TV, because I know if I let myself rest I’ll be a better mother later. If things are really really bad I call a friend and ask for help.

None of these are fool proof methods unfortunately, but they are some things that help me cope and chronic illness is all about coping. There are lots of times when I think I can’t live like this anymore, that this is no life, but I take each day and sometimes each hour one at a time and I find I can manage.

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2 thoughts on “Chronic illness and fatigue- It’s more than being tired

  1. I hate when someone tells me I'll feel better if I just get up and walk around and do something. They have no clue what it feels like to not have any energy at all. They can't understand how I often just need a nap. They don't understand that I use every ounce of energy at work, and often don't anything else to give.
    Gentle Hugs,
    Bonnie

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