It doesn't matter how much I tell myself it's not my doing, it's the RA. Even though I have a good reason for rationing my energy I still have that sense of being haunted by the things I am not doing.
Self preservation and pacing is necessary, but even after all this time I don't always convince myself it's true. Deep down I still feel that I can do anything - it's just that when I do what I think I can do or should do, then I pay for it for days.
Too often before you can even make a good start on an activity your body quits on you. It has many ways of forcing you to do what it wants. In fact it has the upper hand. The brain may be the controller but the infrastructure (body) needs to be sound for you to carry on.
1. Do I get so little done because of the activity of my chronic disease?
2. Is the illness worse and making me more tired?
3. If I exercised more would I have more energy?
4. Was I always lazy? (Note: Reading and eating peanuts was my favorite pastime when I was 11. May have been a bad sign)
RAcanuck put this another way in her blog post:
"After a while your head can get kind of abusive towards yourself, you should be doing that! Why can’t you do this? It’s like a complete separation between what the disease does and what your mind thinks, is it because our eyes cant see it? or because we feel it and we’re ignored and discounted by most? I and surely most folks were taught to not be lazy and to get things done, it’s not a bad thing really unless you end up with AI disease. Then you're stuck on that mindset and your body is stopped in its tracks, the two don’t jive really."
Before you get too discouraged think of the points made in this article titled Consequences of the inflamed brain
"sickness behaviors...are not symptoms of weakness induced by the infection, but rather are an organized set of changes designed by evolution to keep the organism (you) from foraging and thus being subject to predation during a time of weakness"
care2.com
I also found another paper titled Fatigue In Chronic Disease which is helpful despite being published in 2000. Fatigue needs more attention.
I also found another paper titled Fatigue In Chronic Disease which is helpful despite being published in 2000. Fatigue needs more attention.
Once, when I complained about how I was forever behind the list and incredibly frustrated by this, a friend of mine wisely suggested that perhaps my list was too long. It helped. I'd never considered that my list was too long, but indeed it was. Not just because I only have so much in me per day, but because everyone only has so much in the mood for the day. It was a subtle shift in focus from blaming me/my ability/energy/RA, to pointing out that I have a tendency to overestimate what I can do.
ReplyDeleteThis is a great article Annette and one which we all battle with along with our RA. The guilt is awful, we're women, mothers, fathers, workers and to slowly have to 'confess' that we can no long do this or that (at least without paying dearly' is super hard. My mind is 'almost' always willing but the body, meh!!
ReplyDeleteThat's a good point Lene. I think I expect to be able to do at least 10 hours worth of things in a day and now I am finding that is pretty ambitious. I am sure that like you used to I just keep on in front of the computer for too long.
ReplyDeleteYes Gilly, We are always struggling with the 'want to' vs the 'capable of doing'. Right now I feel like folding the wash is too much work.
ReplyDeleteWe have an event called "Doors Open" here where we can tour public buildigs and it sounds like too much walking to be fun.
I used to love to walk everywhere as a youth - I'd walk (and catch buses) for hours. Nowadays I have to accept that I have about 6 hours a day (on good days) for work and recreation. The rest must be sleep and resting. I've come to realize that I get a lot more done when I lower my expectations. It sounds totally counter-intuitive, but like Lene said, if I have a list a mile long, I just get down on myself and beat myself up and get nothing done. If I focus on just one thing, I'm much more productive.
ReplyDeleteThis actually goes back to my working days. I'm a perfectionist (in recovery) and when my brain started misfiring with the chronic fatigue of the Sjogren's, etc, I had to start checking and rechecking my work. My bosses would moan that I didn't multi-task, but the truth was, it was more efficient for me in my disease state to focus on one thing at a time and finish it, rather than stop half way through, do something else, then come back later and be lost, have to reacquaint myself with the first project before resuming it, and often having to stop again, only to repeat all this. Not efficient at all. But of course, in science, you are expected to have the most sharply honed mind, and unfortunately I lost that when I got ill.
In my present job, technical writing at home, I have to resist the efforts of my colleagues to do more than one thing at a time because it will make everything take a lot longer.
Short lists are very good, and also, realizing that you will get more done if you rest when you need to. I was an incredibly hard worker as a teen, and that work ethic persists, but I've had to modify it to continue to work successfully.
Blessings,
Jane
When they talk about setting goals in the self management courses they always stress that you have to make them achievable and limited to the possible.
ReplyDeleteI'm with you on the multi tasking. One thing at a time is becoming the new normal, and though I often read emails and write of look for pictures with TV or music playing, when it gets to the scientific area I need to turn things off and concentrate.
Physical strength is so desirable. I really miss it. Good to hear from you
I'm with you on the new normal - it's certainly different. I'd love to go out in the garden - there's so much to do. I do a little bit as I can, but it's like taming a jungle. My neighbours are all extreme garden nuts, and they're retired, so they look at my garden with a kind of disapproval. Of course, they have no idea what my day consists of - mostly work and then rest.
ReplyDeleteJane