Adult female stands in the middle of an analog clock. She is pointing to specific times representing time management and scheduling.

Self-Care: I Set Small Goals & Limit My Activities

Whether you realise it or not, you are dealing with everyday struggles and an unpredictability that comes with having AS. Pulling yourself out of bed, exercising, making your dinner or even just showering is 100 times more difficult for us people with AS than with people who do not have it.

The unpredictability of AS is what I find the hardest. The same activity may either cause me to be bed-bound or absolutely fine. It's hard to plan for the unexpected.

When you are chronically ill it is vital to know your limits and listen to your body. Having AS means that each day, even each hour, you may have different limits. Learning to listen to your body is so important. Learning about your limits is trial and error. This can mean resting, listening to your body, exercising, walking, sleeping, or anything at all that can help you.

Planning for the unpredictability

I love to plan. Before COVID-19 I would like to make plans with my friends or boyfriend for the next coming days; last-minute plans are usually not my thing. Having AS means my pain and fatigue levels are very inconsistent and unpredictable, and some days I will generally feel unwell. If you're like me and you like to plan, instead of not making plans, make the plans and tell the person that you will have to see how you are feeling on the day.

I am happy and grateful that I got sick last year during a global pandemic. Because at least the whole world also must stay at home too and I'm not alone. I’m not missing out on doing things with my friends. Therefore, I haven't had to limit my outings as much.

Between lockdowns, when I was seeing my friends, I would set a limit of how long I would meet them. I would also let them know that I might need a "time-out," where I need to stop talking and have a lie-down.

Set yourself small goals

During the lockdown, I set myself limits and small goals for the day. I set limits for the amount of time I spend going on a walk, doing yoga, stretches, and doing gentle exercises. I limit my time in college and I allow for breaks when needed. I also limit the time I spend sitting or lying down as this makes me stiffer. I always ensure that I get up and walk around the house or stretch on days where I need more time resting.

In my experience, not setting yourself limits is a recipe for disaster. You will end up in more pain and have more fatigue. At least if you limit yourself to something you can stop at the limit and you have still accomplished something, you have not failed. If you can go past that limit you have achieved over your expectations and that is a big win for you!

During my journey, I set limits and goals that were too high, this leads me to feel disappointed in myself. So, I decided to set myself small goals and smaller limits. On bad days, I just about reach these goals. And on good days it makes me feel great that I can do more than what I’ve limited myself to!

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