One of the common terms used for Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a flare. I have suffered these episodes of illness on and off since I was about seventeen. At the times previous to the last few years however, I never knew what the diagnosis was. It just went as an unexplained problem, most of my blood tests and monitors reading normal levels.
What happens is a flare up of your symptoms.
For me it is, well, chronic fatigue. It's not just man I didn't get enough sleep last night. It's I haven't slept for three days and my body is heavy and think I'm coming down with something kind of tired. Then the mental load associated with being a single mother, well, rest isn't really an option. As this is a constant for me, I can't just lie down and wait for it to disappear. I find it's better if I go for a short walk within my pacing range.
My pacing is a limit to how much I do in any given day. The idea is I save some energy reserves for the following day. If I overdo my limit, I end up in a crash - a flare up of my more significant symptoms. For me, it usually starts with heart palpitations which then leads to air hunger. The palpitations mean I can feel my heart beating without physical exertion. The air hunger is a feeling of suffocation, like there is not enough air to breathe. Most people would recognise it as hyperventilating but these symptoms can carry on for days if I don't curb how much I do. I also feel weak in my muscles. Like when you see a marathon runner and their legs give out, that's what mine threaten to do. If I ignore that, then the lightheadedness appears and if I ignore that, low and behold, I regain consciousness on the floor where I've fainted.
The last few don't usually occur too often anymore as I recognise it once I hit the palpitations. The problem is currently, I try to counteract it, but a girl's gotta eat. It is not uncommon for someone with severe CFS/ME to be completly bedbound, needing constant care as they don't have the energy to do anything, not even basic human needs like the toilet. It's not a nice thing, but I am thankful my symptoms are only moderate.
You can now understand why I had to quit my job as a radiographer. Eight hours on my feet, physical lifting, mentally draining on top of the physical components. To boot, I had two young daughters under ten and a husband who was on the death side of life. He managed to help me a little; he cooked every night and drove the kids around. Not having that support currently, I am fully aware of how helpful that really was.
Anxiety is one of the things that increase my symptoms, anything out of normal. My body doesn't know how to relax. After fifteen years of living in a stress-filled environment, I only know flight or fight. There has been no other means. It has only been since Jase passed away I have managed to have more regular days, days where my limits were 4000 steps per day. At my worst, I've been as low as 1500. You can imagine, not a lot got done. Washing was a difficult task. Some days, I have to figure out if I have enough energy for a shower. Disgusting, sure. Needed, unfortunately yes.
My girls are still just that - girls. They have sports and school. I try my best to make sure their days do not include me interferring with theirs. So I manage my pacing. I am also lucky to have a supportive network around me. Friends who are happy to jump in and help me when they are able are only a phone call away.
Writing is the one thing I have found that doesn't wear me out too much. Even then, though, I must limit myself to only two hours of sitting up in a chair. My cups of tea forever at my side, my single raw sugar and Australian afternoon tea with soy milk at my beck and call to maintain a small level of hydration. Water causes flares as does digestion sometimes. This is the extreme components I have to deal with.
When I have anxiety and depression on top, it starts to force the symptoms forward faster - I'm exercising mentally and physically without moving. I am lying down trying to meditate or keep my surrounds calm. Once the flare has taken hold however, the only way back is a two hour nap. This is my norm. On the harder days, I measure how much sleep I needed before feeling a sense of normal. I measure how "not tired" I am.
I needed to vent about it today, the mental strain having a significant impact. It sounds counter-intuitive to sit at my computer and type when I could be doing other things but I find the physical stuff is easier if the mental stuff is not getting in the way. It's tricky but manageable-ish. I may not move forward far today, but it helps me move onward tomorrow. For that, I am eternally grateful!
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