I have been
in a flare-up for the past two months, and it’s just starting to come down. This
has meant that I’ve had to take higher doses of prednisone to cool down the
flare. Well, I’ve been on prednisone for about two years non-stop now. Every time
the dose starts being tapered off, I fall into active disease again. But I do
feel fantastic when on prednisone. The fatigue relieves… a bit… and I m able to
do ‘normal’ things like exercising. I have been exercising on and off for one
and half years now, and during this period I have learnt a few things here and
there on the challenges, so I hope writing a bout it will help someone.
I discovered two words “adrenal fatigue!”. It’s listed as one of the side effects of long-term prednisone use, but I had not given much thought to the subject. Until I experienced it. I had reached a period where I was approaching remission and I had been able to keep up with strength exercises and cardio five days a week! After a few weeks, I realised that I could not lift weights that were previously quite light for me. I talked to the instructor about it and he told me about adrenal fatigue. After further research, I discovered that, although other people go through adrenal fatigue after weeks of exercise without a rest period, for us on prednisone, it also occurs when you have been on a high dose then it’s tapered off. This is because of adrenal insufficiency (Younes & Younes, 2017) or adrenal suppression. Prednisone is a glucocorticoid, which is similar to a “glucocorticoid steroid produced by the adrenal cortex” in our body (Nicolaides et al. 2018).
Therefore, when this steroid is supplied by an outside source, production of the hormone in our body is suppressed, and when tapering off begins, the body has to kind of ‘remember’ how to produce this steroid to achieve rest- stress homeostasis (responding to stress in the body, for example, physical activity). As such, one of the challenges I noticed while working out, is that the body does not ‘pick up’ as it should. For example, I start running, and instead of getting tired then my body responding by increasing energy release, I just get more and more tired. Eventually I had to take 4 weeks off exercise because it got so bad even daily chores were impossible for me because of the fatigue. Some days the fatigue was so bad that I felt like my heart would stop beating. I went to hospital a few times and found that my heart beat was slow! It was quite scary. I thought I was going to die☹
It follows that my prednisone dose had to be increased for some time, and during this time I learnt that I had take it easy on my body. So nowadays I only exercise 3 times a week when I am not feeling too sick. Lately I have been doing power yoga and some cardio-exercises (running, other times just fast paced walking). Still, three times a week. Sometimes only two. I have accepted that I cannot do more than I can! And I am trying to adjust to that. But it is hard for because by nature, I am an extremely physically active person. It is a daily struggle to accept the things we must give up because of being chronically ill. It feels like pieces of ourselves are chipped off every day by disease. We must still be relentless! And redefine who we are as the changes come, and embrace our new selves believing the best we can that this new version of who we are is enough and it is beautiful!