When you have a chronic illness you lose the control over your body, your physical wellness, that you used to take for granted. One particular problem I have is balancing work, rest and everything else. It would be ideal if I could work four or five days a week and then have enough rest time to ease off my symptoms so I could continue working happily the next week. Of course, this presumes there are only two things to consider, work and rest. There are many more things to consider obviously and that is one part of the problem.
Energy is very limited in my life. It is very easy to “overdo it”. Sometimes five days of work is too much. If I encounter extra stress, a night out, an after-work work commitment or a sixth day of work or effort on the sixth day (say, a child’s birthday party or for me this week, a day at uni) then I will have overdone it and my body will certainly tell me about it. The idea that I can just have a good sleep and it will fix it, or toughen up and bear it or put it out of my mind and I will get over it, does not work. Let me say it again, advice concerning mind over matter DOES NOT WORK. I use caps here not just to yell at you, but to yell it at myself as well. Some days I foolishly think I can ignore my symptoms and press on. It never works. Never.
In the old days before chronic illness reared it’s head, I did stupid things like driving with a migraine, teaching while coughing up chest infection, and working in customer service while experiencing the heights of chicken pox (sorry if you were infected by me, but my boss wanted me to work). Nowadays I know five days at work means at least one recovery day of full rest, perhaps two. That’s work without any stress, just getting up, getting ready for work and going to work five days in a row demands at least one recovery day. Even if I am feeling OK, rest must be included in the following day or couple of days. Recovery days must have a level of rest where nothing much happens. No shower, no jobs, no lifting, no cleaning, etc. I have things I do to keep me sane on those days and I have learnt how to have close to complete rest. If balance between work and rest is working well then those rest days are often quite comfortable. However, when I have “overdone it” I end up having high pain and low energy. Some people label this a flare. Flares can be short, perhaps a day, or long, for weeks. On flare days my body does not listen to my determined but fruitless efforts to help it.
Another problem that occurs time after time is that the timing of life events means that I can not just have a full day of rest when I need it. Work needs me to be there. Or my family needs me to be there. Or I need to go to appointments or do jobs like shopping. There are ways around some of these jobs, for example I order my groceries online and have them delivered, which helps enormously because grocery shopping can be very exhausting. But I can’t avoid leaving home all the time, especially because I work. Today, for example, I needed to not move. It is Sunday, so resting could happen, no work. I just worked the first week of term, a busy five day week and the pressure to do many things at once, as often happens. Then I had a full day at uni on the Saturday. That uni day should have been my rest day, but I couldn’t rest, so the need for rest “snowballed” until Sunday.
When you have a chronic illness, often sleep does not refresh your energy and that was the case today. I had slept well Saturday night but it did not fix the aftermath that I would feel from my six day week. This morning I suspected that I was in a lot of pain, but I have become somewhat adept at ignoring it if I can just take some meds and sit in a comfortable place not moving and reading something engaging to distract myself, then sometimes I am not sure how bad it really is. Until I move that is. Then I feel hurts that I don’t understand. For example, I spoke to my sister on the phone for five minutes. That hurt my hand like a bad cramp and it was only five minutes. I must have had my foot sideways because when I moved it the shooting pangs of pain made me “oowww” quite loudly. When I am really bad, even not moving hurts in random places all over my body. This morning, every move of my body to get up from bed was met with a wince or an oowww-type noise.
Unfortunately, as well as resting today, I also needed to go to the chemist for meds and I needed to buy some materials for class tomorrow. I rested and waited until I could not wait any longer. The afternoon was definitely well under way and I needed to move. I needed to shower. I needed to drive up to the shops. The effort of having a shower took the last tiny piece of energy I could muster. I got through the shower and dressed and went to the kitchen. Then it hit me. Sliding to the floor with dizziness and anger at the pain, I am forced to stop. I stopped briefly until the dizziness subsided and then I decided to turn to sugary food. That gave me a false energy, enough to get ready and head out. I had no choice, I had to go. Struggling around the shopping centre, I waited too long to get a shopping trolley to use as a crutch. The “old people’s'” walking cart on sale in K Mart looked so so tempting. But my mind regularly tells me I don’t want to look disabled. I don’t want to look how I feel. I feel like I ran a marathon and fell and was squashed by a pack of marathon runners. There was a marathon today but I certainly wasn’t in it. Jobs done, I made it home. Now I have to make sure I rest as much as possible this evening so I can go to work tomorrow without feeling like this. Imagine trying to teach with the pain mentioned above. It’s not fun.
I am never sure if the resting is enough, but it is all I can do. There were many more things I wanted to do this weekend, but they were never going to happen with this illness in my life. I have a new level of activity these days and I have to force my mind to stop thinking of things I want (and need) to do and make myself rest. If I don’t rest enough, all this pain will lead to a massive crash, a flare with the additional issue of fatigue, a fatigue that could make me couch bound for days or weeks. Every day is a new day and I never lose hope that the next day will be a good one. That is how I get through and how I manage to keep working.