Boston: Pacing, Frustration and Looking at the Bigger Picture

Last year I was “diagnosed” with MCTD.  I was taken out of work for a few months, slept most of the day away and felt like I had DOMS but without working out.  (Or I may have been in some insomniac sleep walking Fight Club but something was beasting me from the inside for sure.)  For someone whose release is lifting, rugby and other physical activities it was enough to drive me over the edge. My family could see it, my husband could see it and my friends… I was frustrated all the time and sometimes used alcohol to temporarily numb the pain.
Now I used the word “diagnosed” very loosely because MCTD isn’t a differential diagnosis at all.  Instead its a medical euphuism for “your immune system hates you, your body has done a pick and mix of several different disease symptoms none of which the blood work rules out, but we recognise you are not crazy and something bad is going on.”  (That is directly from a medical text-book FYI)
I self-treated with walking, yoga, massage and most importantly very clean diet.  I cut out gluten, soy, preservatives, emulsifiers and more.  I drove my husband nuts scrutinizing every label in the supermarket and buying bizarre ingredients.  He sometimes complained but never after the food was cooked and on the plate as that was tasty.  In 2016 I had a phased return to work and am now back full-time however it hasn’t gone well.
Just 5 months into the year I am on my 4th course of steroids and 5th course of antibiotics and sound like I smoked 2 packs a day for the last 20 years.  I sleep 8+ hours a night (although not solidly as I have a tiny bladder it seems) and most days need to come home after school for another 2 hour nap.  There are days where I can’t explain basic concepts and I feel like I have floated through the day in a cough medicine haze.  I feel like I am stuck in a bad daydream and can’t remember what really happened and what I had planned to happen.  It wouldn’t be a good day-dream like this:
Needless to say this has continued to impact my exercise regiment but I have become more patient.  Many people with chronic disease discuss The Spoon Theory.  It’s a great metaphor to those who don’t understand the choices I make each day.
Throughout a day you need to do the basics: get showered and dressed, go to work, do more work at home (if you are a teacher), get food into your body and leave yourself a little time to unwind.  I have come up with a new rule for myself that I don’t go to the gym unless it’s a good day… I don’t force myself to slog through workouts which will only make me feel even worse the next day.  It is frustrating as the weight loss is slow but the scale is going in the right direction and I am levels above where I was just 9 months ago.  I have also started a new medication that should calm the immune system down so my fingers are crossed.  So instead of being straight up dead I am more like the living dead:
Besides dealing with the pain, fatigue and fog that accompanies MCTD I still struggle with other things on the back of my mind.  There are things I can change, things I can not and those which I  just need to keep checking off the steps in my plan to get to my goals.  I have set myself a gentle goal of two C25K and two lifting sessions each week.  In September I will be taking on a new adventure as I begin a PhD and hope that at 31 I am fit and healthy enough to run around with the university rugby girls.  As the guru Dory once said…

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