Fatigue is relentless and in my opinion, torturous. Sleep deprivation is used as a method of torture for a reason. Sounds melodramatic? If only. I was once told that if I feel tearful at having to do housework, I must have depression, but I disagree. I have had depression, and it didn't feel anything like this. Depression was like a numb kind of misery, an isolation, living behind glass. Fatigue brings a raw kind of pain, there is no numbness, no protective glass, I feel it all, and it is supremely uncomfortable. Basically, any time when I am upright and have my eyes open, I am in a kind of pain. I feel an intolerable craving to lie down and close my eyes, yet at the same time due to the physical strain of keeping going, I feel adrenaliny and buzzy, so it is difficult to relax or rest.
On a good day, the symptoms of my condition will generally include: soreness and aching all over my body, painful muscle tightness in my shoulders, foot pain, random pain in other places such as knees or back, nausea, heartburn, stomach soreness, stomach cramps, other digestive upsets I won't go into, headaches, ectopic heartbeats, dizzy spells, wheeziness, sore eyes, brain fog including difficulty concentrating, thinking and memory problems, plus fatigue of course. On a bad day, and by that I mean what I call a "fatigue day", added to that will be an additional level of exhaustion, marked by dizziness and pronounced fuzzy-headedness with nausea, and a feeling of numbness in my body, particularly my face. I would compare this to the feeling of being drunk, except without the fun part!
Every day I remind myself how fortunate I am to have my family, a home to live in, food, clothing, warmth and so on. Many people in the world do not have their basic needs met. But human beings need more than just the basics of survival. Love, hope, purpose, adventure, fun, joy- all these are heartfelt desires, and I would say, needs, albeit secondary to the essentials of survival. In my life, I rarely get beyond the basics. Caring for my family- school runs, housework, cooking, laundry, grooming the dog and so on, are what my life is all about. My day revolves around whether I can manage to dust the living room or clean the bathroom, whether I can walk to school or do I need to drive. I am thankful that I am able to manage these basic tasks, but there is so much more that I want for myself and for my family.
My husband and I, a while ago agreed that we don't enjoy gardening, because we never get beyond the weeding and mowing the lawn, to the fun part. I think that is a good analogy for what my life feels like. I would like to be able to enjoy doing things with my family, to be able to focus properly when my children talk to me, to feel part of the wider community in the small town in which I live, to feel I am contributing something to the world. There are many issues I am passionate about and it is frustrating and saddening to know that I can do so little. This is made harder when people around me regularly remind me that I am not contributing enough in their eyes. I am not lazy, I am not selfish, and I do care, more than anyone can know, and what I would like is to be reminded of the value of what I am able to achieve, to know that the level to which I am pushig myself is recognised and appreciated. I think that anyone who is caring for others whilst dealing with chronic illness, would like. My comfort is that I am bringing up my children to be compassionate, aware and with a belief in standing up and speaking out for what is right. In that at least, I hope I can make a contribution.
If I could live without guilt and shame, that would make life easier, but it is difficult to achieve that because there is no external measure of pain or fatigue. Unless we could swap bodies with a selection of people, we have no way of comparing one person's suffering with another. When I feel I can't do something, I am making a judgement based on the level of suffering I can comprehend tolerating. But I have no way of knowing whether say 90% of other fatigue suffers could push through at that level, and the problem could be that I am being weak, cowardly, lazy or selfish, for example. There is no way of knowing. With pain or fatigue, the sufferer must always make a judgement in drawing a boundary as to what they can handle and what they can't. The only thing I have to back up my judgements is that if I push further than I really feel is manageable, I invariably end up crashing. This seems to confirm that I am operating at a fairly maximal level.
I am aware that this post may sound whingey, something I have often been accused of! But I think it is important to talk openly about the experience of living with the symptoms of chronic illness. Maybe that is another way I can contribute and do a little bit of good in the world!
In the meantime, I must finish writing and find a way to get my head around doing an online grocery order... so thankful that I don't have to go to the shop to do it any more, hefting around a week's groceries for six was more than a little too much!