About 3 weeks ago I had my first flare in 290 days. Marvelous numbers and feeling very optimistic that this flare would come and go just as others have before it and although it might take longer, no way was I prepared for feeling off base line for 3 weeks. With 20 days and 5 doctor appointments it seems as though everything is checking out just as they had expected. My numbers for MCTD are right in line, my internal organs are working as they should, the tests for other autoimmune diseases have all come back negative. My X-rays show calcium deposits in my fingers which I need to address and am addressing. By all accounts my flare should be over and I should be back to “normal” so what this really tells me is I have a new base line to contend with. Not that a new base line is bad but it means I need to re-think what my body needs. As it stands right now I am needing more sleep than previously so my grand ideas of getting up early and heading out the door for early morning walks and spin classes is not realistic every time I want to. I can pick a day or 2 each week but also have to know that getting just 8 hours or even less of sleep will make me very tired in the afternoon. I did do a spin class this morning with weight training but then didn’t expect to walk at lunch time and instead chose to read. Doing yoga is still marvelous but my several hours a week are just too much now and although I’m in training I have to focus more on book work than mat work.
There are varying degrees of this disease and although mine are varying my fatigue levels daily I need to adapt and change with the varying degrees of fatigue. I am taking more time for myself on the weekends to do yoga, read, rest and yesterday I went golfing with my husband but I just sat beside him in the golf cart and cheered him on. He calls me his caddy but that takes way more work and effort than I was exerting yesterday. Although it still achieved exactly what we wanted, to be together, great chats, fresh air and enjoying wonderful scenery. I prefer to walk but yesterday was very content to ride.
I had started my morning by doing yoga on the beach which was interesting, amazing, and challenging. We took our Sunday class to the lake and found beach big enough for all of us. Some had mats, some had towels but the best I saw which I will do next time is place your towel on the sand and put your mat on top of the towel. This gives you a surface to work on while keep the sand where it belongs, on the beach. I had just a towel and my toes were getting caught in the towel, sand was everywhere, and it kept bunching up. The challenging part was being on un-even ground and find that balance, center and working the core while finding my place within the posture. The amazing part was just what you picture, quiet, peaceful, calming. Nature was our music, the sound of the waves were our center and the scenery was so beautiful. I think meditation on the lake would be incredible and actually on our next kayak trip I will link my kayak to my husband’s so I don’t float off into never, never land and just and mediate while he fishes and guides us around the lake to anywhere he wants to go. There is such natural peace to be had on the lake and adding to it is just that much better.
After all that how can I still be in flare, my life is good, my stress is managed but there is something keeping me from being at my normal base line. Today I just have a new base-line and go back to day 1 without a flare.
Me vs Mixed Connective Tissue Disease 