As I understand my condition more and more, I’ve realized that sometimes it is possible to feel really demoralized and disheartened. There’s nothing to hide about it; there really are some days that pull me down, especially the days I feel as if I am not achieving something. These are usually the times when I forget for a moment that I don’t need to be achieving things at the same rate as everyone else. It gets even harder because I am so used to having goals, deadlines and objectives that this, my present, sometimes just feels like an empty space of nothingness. I think that’s good in a way; this empty space of nothingness has been helping me more than anything else ever did. I need this empty space for myself. But on some days, this very empty space can feel disorienting. I think I was addicted to wanting to complete tasks all the time, and now I’m forced to slow down. I choose to slow down too.
With so much pain and so many things to do for the body, there are times when my yesterday, today and tomorrow begin to look the same. For someone who has to deal with such increased mobility in her body, some amount of stability in the mind (some sort of routine) is always helpful. It brings a level of assurance. I need this stability, this balance, and this certainty that things will stay a particular way. There is just too much instability, uncertainty and imbalance to deal with otherwise!
I’ve noticed that each
time I start to feel bad about anything present, I start to feel bad about future…. and the times I feel bad about future, I feel worse about everything present. Feeling worse about my present situation can ruin my day quite a bit. If I’m not able to find a way to motivate myself (or at least be okay) being where I am, it’s even harder to feel hopeful about future. I like to feel that I am still achieving smaller personal goals in order to be able to achieve the bigger ones later.
One of my main goals these days is to have a certain amount of control over my own body so that I am able to at least look after myself to some extent. This means that I need to be able to do some really basic things in order to feel a little less dependent on people around me when it comes to my own body.
So because I still love to own a planner (My 2015 Planner is this gorgeous Turquoise hardcover planner from Kikki.k), and I still feel ridiculously happy when I can strike things off my to-do list, AND because I want to make sure that I keep going, I come up with weekly goals for myself. I try to write very specific ones, but I know that they have to be flexible; just like my body – if there ever comes a day I am not able to do something, then that’s okay. If there ever comes a day I don’t feel like do
ing something and want to do something else, then that’s fine too. There is no need to kill myself over certain things because I know that no matter how much I try to be in control, things CAN happen. Things HAVE happened. These goals are not meant to stress me out, they’re meant to remind me that I am capable of doing what works for me AND that I still have a direction; even if things feel unclear sometimes.
These goals are just simple list of things I want to be able to do today that will make me feel good today. Bigger goals and dreams can take a back seat for now (or they can nicely marinate themselves at the back of my mind). The last thing I want this to-do list to do is to make me worry about future so much that I spend all my energy thinking about tomorrow, and forget that today is in fact more important than tomorrow can ever be. I did that too much in the past and though I can argue that it worked back then, that very attitude doesn’t serve my present at all.
What doesn’t serve my present can’t possibly help my future. Can it?
I don’t think it can.
So this is what I do:
Every Sunday night, I sit at my desk and think about ten things that would make me feel good about myself in the present moment. I ask myself, “What are the things that I would feel great striking off my to-do list at the end of the coming week?” and “What are the things I can do for my mind and body to feel a little bit at peace with where I am?” At times these goals are slightly more ambitious. But there surely days (and weeks) when my one and only goal is to get out of bed and at least walk around the house.
This to-do list is a mix of things that are directly related to, or totally unrelated to my physical health. I’ve had goals like “Start working on blog”, “Purchase blog domain” or even things like “Meet a friend for coffee”, “Don’t miss naps this week” and “Drink more water” . So yes, they tend to vary quite a bit every week.
Here’s my list for this week:
5 April 2015 – 12 April 2015
- Pilates Sessions X 2
- Reply to Sarah (with points)
- Finish off current book: Macrobiotic Diet
- Pool Walk X 4
- Meet a friend for dinner
- Check: Voluntary Service
- Longer Walk X 1 (Beach?)
- Blog Entry X 1-2 or 1 Pattern Design
- Check: latest HMS updates
- Order next batch of books
Once I am happy with my list, I open my awesome planner (I don’t have a photo for this one – maybe next time), which usually has some items already in place (like Physiotherapy and Pilates slots), and start adding some of the weekly goals into the free slots available through the week. I shuffle things around whenever and however I want to, and tick the items off as I get through the week! And this…. feels freaking amazing every single time.
Another monthly practice that I have adopted very recently is to stare (STARE) at my calendar at the end of each month and really SEE what I have achieved. A lot of times we fail to see that even if our days may look the same, there’s actually quite a bit that we have managed to achieve at the end of the month. For me, there are times something pops up out of nowhere – like an opportunity to participate in a charity event or help a friend with something – and these are still tiny achievements at the end of the day.
In the month of March, I got a chance to write a Patient’s Story for Global Genes, started my own blog FINALLY, was able to keep up with Pilates and walking pretty well and also managed to catch up with a few friends! Of course I had my days of pure weakness, total brain fogs and lack of energy
…but I survived!
My Tape Story 