I contracted mono (Epstein-Barr virus) at the age of 22 when my health problems began. I was fit and healthy before this, and part of my routine was swimming at least 3 times a week and working out twice a week.
Exercise used to be important to me
It had always been important to me to keep myself fit. At this point, I had been accepted to join our local police force as a volunteer officer, and part of the training was to get my fitness to an optimal level. I would go running every evening if I could.
With my health now suffering, I realized that I would not be able to take this opportunity any further, and it was devasting at the time as I had worked so hard for it.
In hindsight, I realize that perhaps I was pushing myself too far. I was still doing my regular full-time job on top of all the fitness training to spend my free time as a police officer.
Lupus grounded me
It was such a shock for me to be grounded literally - all I could do was rest! It was as if someone had pulled the rug from under me.
I gradually felt a little better in time, although I noticed that any physical exertion would affect me, and I feel terrible the next day.
I figured perhaps it would take some time as my body was so out of condition. I decided to buy an exercise bike to build up my fitness level gradually. I started out doing 2 minutes a day, but I couldn’t believe how unwell it made me feel. It would usually be the next morning when I woke up that I felt it.
No matter what I did, I couldn’t shake this feeling of my whole body hurting and feel exhausted after any exertion, and then I started to develop heart palpitations that worried me.
Over the years, nothing has changed regarding this, and it has frustrated me so much. I have found even gentle yoga has the same effect on me. The interesting thing is that not all people with lupus have this issue. I’m aware that many lupies can carry on with exercise as long as they aren't flaring.
I must admit I feel quite envious when I see people going for a run or doing a workout. I guess it’s that simple activity that most people take for granted, but I look at them and think, "Wow, I wish I could still do that."
It still intrigues me as I’m not sure if this is some long-lasting symptom from the Mono or if it’s just part of having lupus? I feel like I had a few lupus symptoms, such as the rashes before getting Mono, so I don’t think I will ever know for sure. I have to accept my limitations and focus on the activities that I can do.
Do you experience brain fog?