Pain, boredom and fatigue are three of the biggest challenges that accompanies a chronic illness. I find pain the easiest to deal with. It’s a constant in my life that I’m familiar with, like a close relative you feel obligated to look after even though you don’t particularly like them and find their company emotionally draining. It’s also my best and wisest friend, the whisper, voice, scream that tells me when to stop doing something that will cause damage and when I don’t listen, it simply overrules me and in a strange way keeps me safer. Mild pain is an annoyance that I only deal with no rare occassions; moderate pain is a like a very heavy piece of luggage that you can’t put it, lighten or get rid of, it’s just always there; severe pain is incapacitating and shrinks the world to just that one sensation in that one moment and nothing else matters or exists and the only thought capable of forming is how to make this stop, have to make this stop. Pain is simple to understand, it’s inevitable and most reassuringly of all, predictable. I know what it feels like and it feels the same every time. There is no changing it or limiting it or avoiding it, there is only deal with it as best you can.
Boredom is harder. I am easily bored. My attention span is short, my concentration levels low and even the things I feel most passionate about is sometimes just not there to spark any emotion. It used to scare me when I was younger, that feeling I would get on a Sunday afternoon when the week is over and there is nothing that has to be done and I don’t feel like doing anything. I can’t immerse myself in a book or movie, I don’t want to talk to a friend, I don’t want to go out, I don’t want to stay in, I can’t sleep, I can’t think and the whole world seems to be running in slow motion and I’m just bored by it all. I still get that feeling and it’s still just as depressing and unpleasant as it was then, but it no longer scares me. I know what it is. Boredom isn’t something that just happens. It’s almost always caused by being overtired. I had a busy school week as a child and it was a struggle to get through all the activities that I had to get through. School, sport, extracurricular stuff kept me busy from six in the morning, sometimes earlier until at least nine at night, sometimes later. Saturdays were reserved for sporting events, saturday evenings for social events which usually involved extended family, the neighbours or a sleepover of some sort and sunday mornings were church and sunday school, then a nice Sunday lunch.
By two o’clock on a Sunday, I was exhausted, I couldn’t concentrate on anything, it often felt like just moving was too much of an effort. The empty afternoon stretched out in front of me and suddenly having time to take stock, I finally noticed my body saying I can’t do anything more, I need to stop, rest, recuperate, take a break from everything. And so I learned to do that. As the years went past and I steadily got worse, the weekly afternoon naps became daily and then, eventually, I needed lots of breaks during the day to avoid hitting that wall of fatigue and disinterest. Boredom is easier to deal with; when it hits, I know I’m overtired and need to rest. It’s not an easy thing to do, but it’s the right thing to do and so I forget about trying to engage my mind in something distracting or entertaining, I curl up in bed and even if I can’t sleep, I rest until I do fall asleep. Unwinding is often difficult, ever seen a small child that’s crying and fussy and tired? We don’t grow out of that feeling, we simply learn to repress the behaviour. I still feel exactly the same way I did when I was three when I’m tired. Logic doesn’t come into it easily and it’s work to realizing I need to do nothing, which feels like the worst thing possible one can do when already bored to death.
Fatigue is a real problem for me. I tire very easily. I try to take breaks, try to pace my activities during the day, try to be sensible and reasonable, but it’s not always an option. Sometimes visitors stay longer than I have energy for, sometimes doctor appointments overrun and sometimes what I need to do just exceeds what I can do, but I still have to do it. It’s busy at the moment and there is just so much that needs doing. Between a mountain of doctor appointments, getting ready to move house and trying to put my life back together again after a long period of inactivity, I’m constantly overwhelmed by too much to do, not enough time and most definitely never enough energy. Thursday’s doctor’s appointment were scheduled late-afternoon and the clinic was running very late, resulting in us being stuck in busy city traffic both on the way in and the way out. By the time we got home, I was crying. Everything hurt and I was so tired I literally couldn’t stand up let alone walk without assistance. It was a draining and pathetic evening and I woke up on Friday in the early afternoon still feeling exactly the same, only now various joints had dislocated during my long slumber and I was in even more pain. It’s Sunday and I’m still recovering. It doesn’t seem fair. Fatigue is not like pain, it’s not something you can push through, where you have at least a little slack in the system. There is no room for error. It’s cruel, strict and unforgiving.
I don’t think I will ever get used to it. I’m bored today and although I stick with the routine that will eventually work, do a little, rest a lot, I’m still tired and I don’t know how long it’s going to last. I miss having a personal assistant, soldiering on without all the help I need is exhausting in its own right. I miss going out. I’m finally feeling better and still I’m stuck at home or in a hospital waiting room. I miss gaming and reading and watching really good television. My relaxation time is mostly spent lying on the couch or in bed, trying to relax and rest and recuperate from doing too much. It’s difficult to remain optimistic when life is swallowed up by a whole lot of not being able to do anything, but it’s not impossible. I’m better than I was a few weeks ago. I’m better than I was this time last summer. Life is taking shape around me, things are getting done. Not necessarily by me, but I’ve learned to let that go. When family and friends offer help, we gracefully accept. Pain, boredom, fatigue will always be challenging issues. It’s never going to let up or disappear or get better. But as time goes by, I no longer feel as if I’m drowning in it and even on days where I do, I know better than to give in to those feelings. It isn’t easy and it is very limiting, but it can’t take everything away. As much as I feel like I miss out on ‘normal’ because I just can’t keep up and keep being interrupted, there is always something that can be done. Not always on the same day or even the same week, but there will be a lull, a slight improvement, a small change that will make it possible to rise beyond it just a little bit. There will always be pockets of life that I can fill with whatever I desire.