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Monday, October 8, 2012

MS Stealing My Spotlight

Today, I am lying straight in the middle of happiness & frustration. I am happy that I am getting so many benefits from my physical therapy. I am at that point when I have regained balance and am functioning enough to feel like I can manage walking without being scared I will fall at any moment. Falling is typically in the back of my mind, but after & during a flare the road ahead is much more shaky. So I am better at my walking and my balance is much better, so now my pt moves forward with strength training along with balance training. I can feel my arms and legs getting stronger each time I'm there. It makes me feel hopeful and, well, kind of like a super hero. Really, it does. The control it gives me back makes me feel like I can take on the world and even chase MS around the corner to hide in fear. For a day or two. Not a cure, but a definite help.

So why the frustration part? I'm tired. I'm really tired the past 2 days. My legs have felt rubbery and some pain too. And my face is hot or well... weird. Over the Summer I began to notice this new MS phenomenon occurring on my face. It has been very strange. Typically, in my whole four year MS experience, I would become red on my cheeks if I became overheated. Flushed, but on an advanced level because the red would be darker than an average "blush". If I was in the sun too long, it would show like a sunburn & people would comment about it. This summer this began to change for me.

I could feel the change. I can feel my face become red. It is a weird sensation. My cheeks feel as though they are changing to rubber or something is lying across my face, like a mask. It gets a numbness almost to it, but I'm not touching it & if I do touch my face, the spot I touch loses the "numbness" for that moment. The redness not only is on my cheeks, but also as a circle of redness on my chin & forehead & nose. Yep. The clown image you are now imaging has not escaped my thoughts either. I've had people tell me I need to put on sunscreen, that I'm getting sunburned or asking if I'm ok. The feeling of my face reminds me of that tightness you feel when you use a facial mud mask on your face & it has dried all the way & is time to remove it. Except it's my actual face so it'll be staying in place.

Here's the kicker. This can happen when I'm indoors, in air conditioning & sitting on the couch. It's MS. It's my new sign. The sign that I need to slow down or that my MS is debating a flare. It doesn't always lead to one, but it is a "warning" to myself. It's happening now. Right as I type this and that's why I am frustrated. I've been taking good care of myself. If I need a break, I take one. I don't overdue it and I have been pacing myself. Today, I went to PT at 8:30am and was home by 11am and had lunch with my husband. I put my feet up to watch a show with him & I could feel it starting. the slow creep of redness and tightness across my cheeks. The heat or burn spreading across my cheeks.

The first time I felt it happening I had to stop & think of where I was. I was not moving too much or taking on extra stress. I was sitting in a cool environment and answering an email. I turned to husband and asked "Are my cheeks red?" Husband (H): "Ya, why?" Me (M): "Because I can feel it. Are my forehead and chin red too? Like 2 little circles?" H: "Yes, what's going on?" M: "MS. It's my new tell. My new sign that MS is lurking. It used to only happen if I was overheated from the weather or during some physical exertion. Since this last flare I've felt my face change and it does it at all different times now." When I'm out now & people will say, you need to get out of the sun or you have a bad sunburn. I have to ask them if my chin and forehead are red too? If they respond yes then I have to explain that it is MS and another weird byproduct of it for me.

So today, I feel like a superhero with a face of the villain after he'd had acid thrown on his face. Happy and frustrated. I will relax and take care of myself and hope that it is not the beginning of a flare because MS has taken enough time from me this Summer and as far as I'm concerned it only can have a recurring role the rest of 2012. I will be the star of my show and MS needs to quit trying to steal my spotlight.

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