Sunday, October 13, 2019

Slow down does not mean stop

Taking a time out is not as easy as one might expect. When I discovered that I would need a break from work to take care of my health, I assumed that meant scheduling one healthy activity after the next. I envisioned a big weekly schedule of events that would fully account for my time off to ensure that there was not one wasted moment.

The reality was that I was drained and didn't feel like doing much of anything. When I talked with my therapist about my need to feel that I was getting something accomplished, she reminded me that I was getting something accomplished. Rest. That's the thing my body needs most.

Pain, whether chronic or acute, takes a lot out of you. It's exhausting. I'm accustomed to the fatigue of psoriatic arthritis, but any overuse of my back causes more discomfort as a form of tired that I've never experienced. There are no words that I can find to describe what I feel when I reach this point. I've been trying to describe it and officially give up. :)

The key reason I'm not able to work now is this horrible pain in my low back but the psoriatic arthritis and emotional distress only amplify this need. Still, doing nothing isn't realistic. And, that wouldn't be what I need. Physical therapy is my primary activity and I love to spend time in the pool. That's the one place that I can take a real break. There is no pain in the pool and I can appreciate this opportunity to feel normal. I've got doctors appointments and a weekly session with my therapist. But, this schedule does not create a fully satisfying lifestyle.

Scott and I had tickets to see Aladdin The Musical Friday night. It occurred to us on Friday afternoon that I may not be able to comfortably sit in our center orchestra seats, so I called the venue to ask about handicap seating. They generously provided us with seats in the back of the orchestra level that would allow me to stand, as needed. These seats also had a bit more support than the other seats, so it was a much better option for us.

When I have walked too much (which is sadly not that much walking) I find that my leg will sometimes want to buckle. My back won't allow me to continue walking. Since the performing arts center we visited on Friday night is large, I knew it would be difficult to walk. I had to swallow my pride and use a cane for support.

Yes, I have to slow down and take care of my health. But, that doesn't mean stop. It just means that I need to find a healthy balance. How do you find that healthy balance when  you're struggling with a disability? Here are some ways that I have found:


  • Ask for accommodations. If there is something that you really want to do but you worry that it's too much, try some creative thinking. Just like switching my seats for Aladdin, it might just be a matter of asking.
  • Get the tools you need. I sometimes enjoy cooking, but standing in the kitchen can be very difficult for me, at this point. Rather than give it up entirely, I try to find simple, easy to cook recipes. Amazon was also a life saver! I ordered kitchen mats that make it more comfortable to stand and they arrived in just one day.
  • Find fun new hobbies. After my knee replacement surgery a couple of years ago, I started a cross stitch project that I never finished. I decided to start on that again. I've also found more time for reading. 
  • Don't isolate yourself. I'm a very social person and, if I allow myself to become too isolated from my friends, I can get very down. This disability can be very embarrassing for me. It's hard to let people see me walk with such a severe limp or using a cane. There are so many times that I have to cancel because I just am not up to it. But, I still have to allow myself time with others. Invite friends over. Spend time with people who you can be yourself around. They will understand if you're not able to go run a marathon with them!
  • Be flexible. We had a family game night that started around the kitchen table. It wasn't long before my chair was causing a lot of pain for me, so we moved into the living room where I could get comfy in my recliner. I'm a creature of habit and believe that games should be played around a table, so this was not super easy for me. But, this is the way I was able to keep enjoying the night with my family.
  • Take care of yourself. If your body tells you to rest, do it. You don't have to keep going. Order take out and relax.

How do you find a healthy balance? Please share your ideas. I'd love to be able to use them for myself!

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