It is MS Awareness Week. I am in a foul mood. It started last Thursday when I got horribly overheated. 70-80% of people with MS experience ‘heat sensitivity’. That’s a nice way of putting it. According to www.nationalmssociety.org some people notice that their vision becomes blurred when they get overheated—a phenomenon known as Uhthoff's sign. I love these symptoms that are usually named for the genius doctor that discovered them...generally by listening to their patient. These temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.
Another fun one that I get is Lhermitte’s sign. A brief, stabbing, electric-shock-like sensation that runs from the back of the head down the spine, brought on by bending the neck forward. That’s a super fun one. But it is lessened somewhat by medication used to treat my trigeminal neuralgia and dysesthesias. I guess no one got to name those after themselves.
Last Thursday, as I slowly overheated, I noticed my vision worsening. Followed by a decrease in balance and fine motor skills. Fatigue, the ‘chronic disease knock you on your butt’ type, came to visit around lunchtime. The signals from brain to body began short-circuiting as my damaged myelin nerve coverings reacted to the temperature. All of those ‘signs and symptoms’ mentioned above just kept ramping up, until guess what? I was in a bad mood. Short tempered. Let’s call that Judy’s sign. An almost uncontrollable desire to do socially inappropriate things like smack people who are talking fast, smash holes in windows to increase ventilation, rip the thermostat off the wall and other downright unfriendly actions!
By the time I got home Thursday evening I was a mess. As my body cooled the muscle spasms began. Debilitating for at least an hour. The exhaustion was there for the rest of the evening, I felt as though I’d run a marathon. But why is my foul mood persisting four days later? Because I have not gone back. And tomorrow I must go back. To where? My fantastic new workspace, large and luxurious, giant windows, peaceful quiet…and a thermostat set at 73-77. I have been avoiding it like I would avoid Death Valley. Luring me in with its loveliness. Bloody Hotel California!!!!
While all of those signs and symptoms are awful, it’s Judy’s sign that I am most afraid of. Because that is the only one that anyone else can see! I have the good fortune of having mostly ‘invisible symptoms’. There is my MS Awareness week lesson for all of you. Just because someone with MS ‘looks good’, it does NOT mean they are feeling good. Instead of just saying “You look great!” try “You look great but how are you feeling?”I have a large portable A/C unit at my desk but it can’t fight that temperature, it is not designed for such a use. I have a fan. I went shopping and purchased ‘climate appropriate’ office clothes and some super strong deoderant! I will wear ‘Big Blue’, my trusty cooling vest, invest in frozen foods, a bag of ice and smoothie ingredients. I will bite my tongue when someone says, “you’ll adjust”. I will pull my hair up and wear slip on shoes with no socks. I will run my wrists under the cold water and splash it on my neck every couple of hours…going back to my desk slightly damp so as to allow the evaporative process to help me cool off. Is it altruism for my co-workers, stubborn pride or simply survival? I don’t want to answer that. I’m angry that I even have to ask the question. And thus the foul mood persists. I certainly had some bright spots with friends and family this weekend, don't get me wrong. But the return to the Hotel California has been weighing on me. For the record, this is not the time to suggest that I quit work. I am not going out that easy. Speaking of going out...I'll try to leave you with a little humor...at least from my warped brain.
While learning about the communicable disease process during my studies this weekend- "It is important to know all portals of exit from a reservoir". Indeed.