“Fitness plan” for lupus

My appointment yesterday with my occupational therapist went really well! Usually I go to her and feel that I disappoint her because of how little progress I’ve made since the last appointment; she never gives that impression, at all, but I feel guilty nonetheless.

I finished uni in about June 2012, so it’s been nearly two years since I moved back to my small hometown, living with my parents. Soon a year off molds into the next one, and I’ve made no progress career-wise. As my health has gotten worse, too, I have felt how I’ve ground to a halt, and for a long time have been trying to pick myself up out of it. Both my occupational therapist and psychologist told me I aim too high, by coming in and saying “I need to sort out my entire life”, or that my current goals are things like “Tidy the whole bedroom, organize all my things, sort out a course, go back to uni”. Too much. And then inevitably I stretch myself too thin and have to take such a break that things tend to relapse again, particularly the state of my bedroom!

More recently I have been learning to accept that it’s o.k. for me to say no to things, to take breaks, not push too hard, and look after “number one”; however, this can be hard to balance with my stubbornness to push myself too hard. Also because I have been off uni for so long, my “base level” of activity has decreased a lot, and this means that the smallest tasks can feel like such a big deal for me. I have long known that I need to increase my basal activity level in order to build some stamina – to get “fit” by lupus standards, which isn’t much by “normal” standards, but hey! Being disabled has its own level. 🙂

Having decided to go back to school this year or next year, I acknowledge I’m going to have to increase my fitness quite a bit from what I’m managing now (which is barely able to get out more than once a week, if even) to getting out most days, walking around campus. This time the occupational therapist, Jill, and I worked out a more explicit plan, which combined with the mini-goals I write here will hopefully be better for motivating me. It’s kind of based on the “Couch to 5K” system, which you can find more about here. As the name suggests, it’s a plan to get beginners from the couch to being able to run five kilometers through weekly stages, which you repeat until you find it fairly easy and comfortable before moving on.

Now, I’m not ever going to be able to run 5K, but my plan should still allow me to build significant fitness on a personal level. We defined each part of my plan as “weeks” like the Couch to 5K, but “stages” is probably more appropriate. The key is to choose relatively small things, a few of them, things that you can slowly build up over stages. If I suddenly aim to get up, get showered and dressed and into town every day, I can tell you that is never going to happen! Also, I know from experience that trying to meet too many goals only works in the short-term, as my body permits. So along with the five mini-goals each week, here is the outline of my fitness plan so far:

Stage 1:

  • 5 reps of my two core exercises for physiotherapy, once a day
  • Walk to the shop near my house, which is about a 0.4 mi walk all round according to Google Maps, once a day
  • Volunteer in my charity shop, once a week (I’m scheduled on Wednesdays) – on Wednesdays there is no obligation to do the other tasks, as it’s already such a venture

Stage 2:

  • Continue the walk to the shop each day
  • Continue the volunteering once a week
  • Increase my physio from Stage 1 to doing 5 reps twice a day.
  • Shower at least twice a week (I tend to shy away from showering if I have nothing scheduled because it’s so strenuous despite having a seat in there; I feel kind of sad I have to put this as a goal, but, hey I do wash!)

We had said to do Week 3 the same when we still labeled them “weeks”, but the general idea is to repeat these stages each week until it gets easier and I feel comfortable moving on. I have written on the sheet of paper “IF I FAIL ONE DAY –> DO IT THE NEXT DAY!” (Jill didn’t even like the negativity of me using the word “fail”, which is a good point!) This is the advice I give friends on many subjects, particularly self-harm and addiction, and for self-harm I follow it myself; I don’t count how long it’s been since I have not harmed, so that each time I do relapse, I simply tell myself “Tomorrow is another day”, and try not to beat myself up too much for ruining a long stretch. As with anything, you only really fail when you stop trying, so no matter if I miss days, or I do relapse with self-harming, or whatever issue is at hand, I must simply continue on the next day. One of my favorite adages is a Japanese proverb: “Fall down seven times, stand up eight.”

Hopefully as Stage 2 becomes easier for me, then I can make some more increases. The key is to go slowly. I shy away from doing my physio every day because there is so much of it that I feel I’d be doing nothing else all day; but hopefully by getting used to a higher basal level of activity, doing the core work will be more normal for me, and adding in something else will feel like a small extra rather than both of them feeling extra as they would if I started doing the whole lot now every day. I hope to add my physio slowly, move up to volunteering twice a week (as I volunteer at another store but don’t often get there as I give the first priority), maybe extending the daily walk, for example. I’m still going to get tired, I’m still going to be in pain, and I’m still going to have to use my walking sticks, but I think life will be a bit more manageable with this higher basal level of fitness, and it means that I won’t so much have to take days off surrounding scheduled events, have to save up all my errands for one day and then pay for it for days afterward. And importantly, I hope it means that I will manage if I do get back to school. 🙂

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