Yesterday’s diet limitations post made me think of doing an activity limitations post. This is one of those things that can differ broadly among people with Lupus– some people may have few or no activity limitations, and others may have significant limitations.
For instance, Shannon Boxx, a player for the U.S. Women’s Soccer Team, has Lupus, but was still able to play for us in the Olympics in London in 2012. (She has recently retired, in October 2015, but didn’t cite Lupus as the reason– she is now 38.)
However, I have significant limits on my permitted physical activities, due to Lupus affecting my musculoskeletal system, and my central and peripheral nervous systems. I am barred from running, cycling, and weight-lifting, just as a start. I used to tell people that I was restricted to low-impact exercise, but that means so many different things, I stopped using that.
Just to be clear, these restrictions are so that I avoid pain, inflammation, and possible damage. I am *able* to run– but if I run one day– even just a short distance– I probably won’t be able to walk for the next week or two.
😛 One doctor once told me I could walk, I could swim, and I could do tai qi or gentle yoga. That’s it. One of the things I want to discuss with my rheumatologist tomorrow is developing a physio/strengthening program with him or a physiotherapist who is familiar with Lupus. This is certainly an area where more research needs to be done to better serve patients’ needs.
For some reason, rheumatologists seem to hate having their patients see physiotherapists. About a year ago I asked my new one about this as well, and she said she didn’t want a physio coming anywhere near me. Instead, she recommended I go to a gym and tell the trainer to approach me as if I were a 70-year-old. Great! So helpful! I actually followed her advice, but the looks on faces of some of the trainers said it all: they didn’t believe a doctor had told me to say this.
The biggest problem with the current approach to physical activity and people with Lupus peripheral nerve involvement is time. If you have to walk instead of run, it takes a lot longer walking to achieve the same benefits you would achieve with a run. The medical advice is contradictory: do a half hour of activity every day and you will be healthy, but exercise enough to keep your weight down, and your heart and lungs healthy. A half an hour walk each day simply isn’t going to give a 35-year-old like me enough of a cardio work out, especially when my heart has the extra challenge of Lupus and other health conditions.
I try and find hills to challenge my heart rate, go for longer walks (more than an hour, which is not strictly following the rules in the UK…) several days a week, and I do yoga to build muscle, and stabilise my joints. I’ve worked with a one-to-one yoga instructor who is familiar with the dangers of hypermobility (which I have), so that I know how to approach a new yoga practice in a way that’s safe for me. I have to be careful. Sometimes even body-weight exercises are too much for my joints and muscles to handle, and I have to do extreme modifications to make it work. But I have to make it work, because the only other choice is to turn into a bump on a log, and get sicker and sicker. Hard no from me.
Wondering what’s going on with these posts? Check out my explanation HERE!
This Isolation Life 