The other day I came around the corner of the closet, cutting it too close in my bare feet, and jammed my left pinkie. Wow did that hurt. It’s surprising how many functions that small digit performs. And how often it enters dangerous territory when it’s feeling fragile. The things I do automatically are the places where my toe feels vulnerable. I just gave it a good rub and ended up with more little red spots of blood under my skin. I should put ice on it but I don’t want to be chilled. Today, I AM my little piggy. That is how vulnerable most people with ms feel when misunderstood by people they assume are healthy and should ‘get it’.
Many people with ms report awful, hurtful words spoken to them. “Are you feeling better?” is neither. But to someone who is reminded daily by the symptoms of ms, despairing they will never feel better, that question represents the painful reality of being misunderstood and discounted. As with my sore toe, the perceived vulnerability is everywhere.
I’m in pretty good shape so I do not feel the ‘burn’ of an awkward question. My FL neuro, who knows only the relatively healthy me, said – if there is such a thing as a mild case of ms, you have it. The neuro in NJ would not agree with that assessment. He saw me in rough shape for years. I read of people on the ms pages who land in the hospital with optic neuritis, hooked up to iv steroids. Thank goodness that is not me. Steroids give me glaucoma. Either the ms and inflammation problems with eyes are old and tired and not giving me trouble anymore, or the Coimbra vitamin d protocol and diet deserve the credit.
Why me? More than forty years with this almost untamable creature? Are there really categories that include me and my peers? I think I have a few. Have I tamed it? Can I ever take credit (with a nod to God) for my way-above-average condition? Someone asked me recently if I wondered if I still had ms, That’s a bit like the question that annoyed a friend recently. Her primary care doc asked if she had a neurologist. Really? There must be another way of asking these questions.
I’m eight months into the Coimbra Protocol and this is when the vitamin d is supposed to be stable in my blood and I will have a return to more robust health. I think I’m spending it, moving into our new place. Every day we have a meal there. And every day we bring something. Clear out the house. Fill up our new home.
There is an improvement from the protocol. As far as the move goes, I am able to organize (mostly in my head) what needs to go and and where. I walk the long halls of our new building and occasionally take the stairs.
There were people on Sjogren’s FB page complaining about autonomic dysfunction. I had many bad nights in years past, taking 3 am showers, turning the heat to 78 when it was dropping outside from 84 to 64. Sweaty. Cold. I don’t have those nights anymore. We’ve had that weather and we do keep the thermostat at a consistent 76 but I do not notice what I only recently realized were Sjogren’s symptoms, not MS symptoms. In addition, when I go to the doctor, my blood pressure and pulse are well within the normal range instead of being too low for the cuff or thermometer to register.
The fatigue remains. Nick is busier than usual so he doesn’t mind going to bed early. Usually between 8:30 and 9. Awake at the crack of dawn. I do not like naps and usually put them off and then crash at 7. Yes. The fatigue is still a big part of my life. I make accommodations that are so familiar and longstanding I don’t even notice I’m making them. Like how I walk without showing the drop foot. Unless you were walking behind me and watching my gait, you would not notice.
I will not be exercise walking for at least a few days with my jammed toe. Our new home has a treadmill and two classes of interest. There are many reasons we can’t wait to get there and start our new life.