6 years on and I’m still learning.

I was inspired to write this entry after I took a turn in the gym. One of the reoccurring themes of my MS journey is heat sensitivity or heat intolerance, also known as Uhthoff’s phenomenon. I want to share my experiences with heat and exercise.

So, what, we all get hot? True. But do you experience any of the following? Blurred vision, double vision, fatigue, heavy limbs, feeling faint, dizziness/vertigo, hot flushes, cold flushes, incontinence, numbness, mood changes or a burning sensation? I’ve no doubt that you’ve experienced at least two of the following symptoms. Let me explain how Multiple Sclerosis never lets me forget about it.

I woke up and struggled to get out of bed. I knew I was more fatigued on this day than I was the previous, but I felt that I needed to suck it up and just go to the gym. I’m never overly enthusiastic about going to the gym, I was more conscious of my lack of interest on this day because it was very warm. I was anticipating a mini flare up or two. Class began and I kept telling myself to keep pushing and keep going. I didn’t want to make a show of myself in front of everyone. I worked as hard as I could, which in hindsight probably didn’t look like much from an outsider’s point of view!

20 minutes into the workout I remember thinking that the heat was relentless. I felt as though I was boiling from the inside and that my body was melting.

(Side note: Roughly 6 years ago the right side of my body went numb and I had pins and needles. The symptoms that accompany flare ups generally dissipate after around 6 weeks. But, sometimes those symptoms may linger. I have yet to regain complete feeling on the lower right-hand side of my face (the cheek to jaw area) and a patch on my right forearm also has diminished sensitivity.)

I noticed that the numbness on my face had begun to tingle and spread upwards from my cheekbone and stopped just beyond my temple. My whole body just started to slow down. My legs began to feel weak; I was telling them to move, but it was like they had been filled with cement. Lifting them was becoming gradually harder. I thought the session would never end. I’ve grown accustomed to mini flare ups during training; blurred vision and the spreading of numbness usually, but this workout took a lot out of me.

Once I got home the fan was switched on. I must take lukewarm to cool showers. If I take a hot one, I end up with tremors, blurred vision, dizziness and numbness spreads around my body for a few hours after. Far from ideal. Towards the latter half of the day I began to feel a bit better.

The following morning, I had another gym appointment. It was much cooler today than it was yesterday. We began the circuit style session. The first round wasn’t too bad, I pushed myself and was doing alright. Then, out of nowhere during the first stage of the second round I felt a warm flush run through my body from head to toe. Out of the blue I was roasted. Just like that, my mood changed. I felt angry. I started to feel very weak. I remember thinking that the weights should not feel this heavy. I physically could not raise my hands above my head no matter how hard I tried. I was telling myself that I can do it, don’t make a nuisance of yourself. Then my vision blurred.

Rising from the bench to move onto the next piece of equipment I got a sudden case of the spinners. I could liken it to coming off a merry-go-round as a child. I walked to the toilet while holding onto various pieces of equipment to make sure I didn’t fall. I wanted to cry. I felt defeated. I go to the gym to try and better myself and yet my body stops me from doing so? That’s irrefutably unfair. I splashed cold water on my face and wrists in a futile attempt to cool down. By now I was seeing double. I was beyond frustrated. I waddled back to the gym floor and was adamant to try again. And I did. But not for long. I was ready to collapse. And so, I had to be driven home. I slowly trudged up the stairs, stood under the water in the shower, cried and went to bed.

The most exasperating part of this illness is its invisibility. How can one experience so much torture inside one’s own body and no one can see it? It’s tougher to deal with MS when no one can see your suffering and understandably cannot comprehend what I experience. And people think I’m mad for disliking summer! Upon reflection, I didn’t do myself any favours. I knew my body was telling me to stop, and I suffered the consequences as a result. I’m still learning to take these symptoms seriously and to know when I need to just stop. I’ll get there! Chin up and keep going.

I can go the distance.