Unpredictability

While I am so thankful to have good days as well as bad, the unpredictability of lupus makes my life so much more difficult than I think otherwise. At least when things are more constant, you get a better feel for your limits, and are in a better position to make plans according to them. It drives me up the wall to make plans and have no idea whatsoever whether they can actually come to fruition!

Haha, don’t get me wrong, I don’t wish for more “bad days”! I’m just very bad at knowing my limits, and it’s the thing that my doctors get on at me for. I do have pain every day, but when I have those rare days when I’m managing to do a lot with relative ease, I don’t have the willpower to slow down! It’s exciting to have a burst of energy (by my standards!) and when you spend most of your life wishing for energy, it’s near impossible to think logically and not use it! Of course, depending on what I’ve done, I’ll be paying for it in the days that follow.

Then again, even on “normal” days, I know if I have an outing, I’ll have to pay for it the next day. I’m sure many other disabled people know of having to schedule your life around energy and pain levels and other events, rather than simply your time. I frequently have to refuse outings while I feel fine and able, even if just a short trip to the shop or something, if I have something scheduled the day after, because if I go out today, who knows if I will be able to get up the next day? It can be very tiring to have to think far in advance any time something physical comes up, and in ways it means I’m restricted further than perhaps I would be if I just took the risk.

The same thing is tough with mental health, of course. It sucks to make plans and then find out at the time that you have absolutely zero motivation to act upon them even if you physically could. But often, I find I have so much motivation to do something, but my body’s not having it! I often say that if my sister and I were one being with my motivation and her physical strength, we’d be unstoppable! This week she has a week off from work, and we had planned to really tidy out the bedroom and organize much of our stuff, donate much to charity, and so on, but here I am in bed with bad flank pain, plans out the window! (Now to find a way to convince sis to just go for it without me; I can sit at the side and motivate her, haha!)

I’m just kind of feeling annoyed with my inadequacy today, hence this post. I make plans with the occupational therapist to sort out my life, the chaos that is my bedroom in particular, but then waking up each day can put a halt to even small plans no matter how motivated I feel. I tell my physio that yes, I’ll make a schedule for the basic stretches and stick to it, but as the weeks continue, I realize it’s not as easy. Positive attitude can help, and I’m a stubborn person so I do often push myself too far because I’m determined to get something done, but if the body’s not having any of it, optimism can’t work miracles. It’s still a strange feeling for my determination to fail me, but it’s always a work in progress to listen to my body and not feel like a failure for saying “No, I can’t do that today”. It’s o.k. to be “selfish” and look after number one first!

(I still wish wizards would appear and clean my bedroom though.)

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About wolfennacht

I'm a 25 year old disabled polyglot who mainly spends time writing novels and poetry, teaching myself languages, and reading too much. I use a wheelchair. I am currently a grad student in biomedical science. I mainly blog about my physical and mental illnesses and procrastinate writing on my crochet blog!
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