Heat Intolerance and NMO

I have a love/hate relationship with the sun.

The winter was long and extra cold this year. I felt an overwhelming sadness by the constant darkness, so much so that we took two trips down south just so I could feel the vitamin D warm my skin. The natural sunlight gives me a boost of energy, it helps me recharge and most importantly it helps calm those pesky neuromyelitis optica (NMO) symptoms that happen in the cold. But too much of one thing is a bad thing…

Now I find myself in the heat of the summer, already scanning the Internet for hotel deals to stay in Whistler next winter. With the heat comes a different set of NMO symptoms that plagues me. The fatigue bothers me the most because I always have a jam packed day and love to keep up to my almost 2 year old daughter. I’m irritated by the weakness in my hands, quietly cursing under my breath each time I’ve almost dropped a mug or struggled to undo a bottle cap.

They call it “psuedoexacerbation”, where symptoms seem or actually do get worse. It can happen in the cold and/or the heat, exacerbating different or the same symptoms. If you’re unlucky like me neither climate is preferred. The cold/heat can slow the nerve impulse transmission to the already damaged parts. Fun, right?

I’ve tried the cooling vests, ice packs, etc. with little or no success so like everything else in life (and this disgusting disease) I find planning helps make things a little easier. Not that I avoid the heat but I’m strategic about when I expose myself. The sun is at its highest early afternoon so I get my tasks done inside then. I take walks or bike rides with the family after dinner time and fortunately my husband does all our yard work. If I find myself in the sun midday I take my time, take breaks and try to drink a lot of water. And always schedule in time for rest afterwards.

It’s much more convenient to take the easy route and complain about NMO but instead I choose to consider it a disciplined way of life, one that requires me to always plan ahead.

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