My physical activities come to an abrupt halt once that Louisiana heat hits. I have a heat intolerance due to my living with indolent systemic mastocytosis (SM). During the winter months I can go outside and enjoy nature by taking walks. But summertime is a whole different story.
I do enjoy my pool, which is located in the shadiest area of my yard. But since finding out I had severe osteoporosis caused by ISM, walking and swimming don’t feel like enough to stay healthy, build my bones (even with the Prolia injections) and keep my weight down. So, I decided that this summer I would do more to take accountability and regain my health.
My new tools for better health with systemic mastocytosis
I first accidentally found MASTHAVE® app for mastocytosis. I did not even know it existed. I can chart my daily symptoms, medicines I take regularly, other meds when needed and track all my testing that is done, like blood work and bone marrow biopsies. Then there are these charts where I can see how my disease is doing for a certain amount of time that I choose. Charting this made me realize that I needed to do more for my health. If you suffer from SM, I recommend you download this app and give it a try.
Like I said earlier, I do swim daily in the summer, but I felt I needed more. I must be careful with osteoporosis and my bad back, so I needed something that was safe but also enjoyable, so I would stick to it.
I saw ads for vibration plates — platforms that vibrate to stimulate muscles — and started doing research on them. I made my purchase and I have been using one for 13 days now. I get on it first thing in the morning for 10 minutes, sitting crisscross and meditating.
This wakes my body up and it feels fabulous. I have worked up to level 10 while sitting. After that I do safe stretching on a yoga mat, concentrating on lower back stretches. Next, I take on my physical therapy exercises to strengthen my legs, which weakened due to my back being in bad shape.
Twice daily, I do 10 more minutes standing on the plate while lifting light weights. I have worked up to a level 5 and I love it. It is fun, and I look forward to doing this routine every day. I haven’t missed a day since starting.
I don’t know what is true or not with the plates. Some say they’re a gimmick, others that they are good for strengthening bones, lymphatic drainage, strengthening the core and balance. I do feel like it is working my core and balance for sure. But the most important part is that even if the other stuff is not true, I am working out now. Lifting light weights and stretching. Things I was not doing before purchasing the vibration plate.
I also find myself making mindful food choices now that I am more active. I don’t want to mess around and eat junk food when I am working on my health.
Finding my thing, and sticking to it
Living with a rare disease is hard. It’s hard mentally and physically. But we must keep pushing forward and finding ways to better our health. Goodness, just think about what we deal with daily and how strong we are.
We are fighters. And we must continue to fight our diseases head-on and win the war, even if we lose a battle or two along the way. You just need to find something you can do and enjoy. If your doctor says you can, then try the vibration plate. I promise you won’t regret it. Even if it just helps you relax or meditate. Find your thing and stick to it. I am holding myself accountable, and you can find a way to do the same. Let’s all motivate each other and be the best our disease will let us be. Let’s live life to the fullest.
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