Hi,
I'm trying to make sense of fatigue. Let's say I have many more questions than answers: it's my nature and all the variability of MS doesn't help. I'm going nuts!
I've been diagnosed with MS two and a half years ago: double vision. Double vision is gone. No relapse since.
I am off work, it's been about 10 months. Biggest hurdle is fatigue and trouble concentrating and my job is very cognitive.
I was running before and doing triathlons. I am still running, cycling, swimming. I consider myself very lucky. Although, I'm not working and have more time to exercise, I train a bit less because I lack energy but still get 7 to 8 hours of training in each week. 10 to 12 hours a week was more of my routine before.
So here is the deal... It seems that whenever I speak with a health professional (neurologist, ergotherapist, family doctor, etc) their face is marked by surprise whenever I mention the exerise I do. For example, my neurologist is ramping up his training to complete his first 10k while I can run for 3+ hours straight tomorrow. And when I mention my inability to work, I can't help but feel guilt, as if I were a cheat trying to get paid disability leave and early retirement (I'll be 45 later this year). My ergotherapist, at the rehab center I go to, to help me manage fatigue, thinks I should be able to work. To which I agreed as I was having a good few days. I have a feeling that seeing that I can exercise for hours, she sees I can work. Also, she told me that most people she's seen about fatigue have it constantly, not with as much variation within a same day.
My current symptoms are not visible: periods of fatigue sometimes accompanied by blurry/tunnel vision, headache, nausea, urgency to urinate, and recently heavy legs and some tingling in my left leg.
My neurologist can't say I can't work as these symptoms are not measurable. All he did is order new MRIs.
I was wondering if anyone has had a similar experience where fatigue is not as much physical than in the head: your thinking works as if you were drunk. Some days are pretty OK while others are awful. And going for an appointment usually wakes me up because of the anticipation, I only feel fatigue coming back after that appointment.
Have you experienced mental fatigue and physical fatigue be two different things? When I feel physically tired following a workout, I'm happy because I control it, I know the cause, it makes sense, it's familiar, it will subside with rest. The fatigue in the head, I can't find a cause even with all the diaries and I can't predict when I'll feel better: in the afternoon, tomorrow, later this week?
When I have a good day, I feel guilty, that I should get back to work and all the questioning comes. I believe that I could plow through bad days just as I would plow through for a triathlon, marathon, etc.
When I have a bad day, I wonder why I was feeling the guilt and questioning, that I couldn't even rember how I felt yesterday. That whatever questioning I had made no sense.
What were my questions? Brain vs physical fatigue, does anyone see them as different? Am I just used to deal with the physical fatigue? Am I hallucinating? Any help to deal with this fatigue and the questioning is welcome.
Ronald