Here are my weekly stats, it helped that I participated in challenge last week with my co-workers so they kept me moving.
Total – 108,050
Daily average – 15,436
Miles – 41.82
Floors – 246
All in all I’m feel better and looking forward to meeting with a Raynaud specialist to see if we can take better care of my fingers and toes as well as see a new Rheumy just for another opinion about my long term management care. 12 years is a long time to have MCTD and since most people with MCTD move into different categories of MCTD I need to figure out what my life looks like long term and if there are things I can do now to make for a better transition later I’m all in. However, I need to have some guidance and have other people weigh in with their opinions and suggestions. I’m very hopeful for the future but need to properly prepare for it.
After my last post about not feeling I was shocked to see my weekly Fitbit stats. Pleasantly surprised, and a good indicator that I’m really doing quite well and with some tweaks here and there along with a new base line to work with I can start to feel just as strong again. Speaking of strong I have been avoiding weight training because I am feeling fatigue, I’m having some issues with my hands and especially my fingers and some stiffness in my joints but after seeing my stats I realize I need to put the weight training back into my routine and even if it means modifying to lesser weight then so be it. Strength is really important and I can no longer avoid it.
Total = 105,443
Daily average – 15,063
Miles – 40.5
Floors – 235
I’m very pleased with these numbers and it is just a reminder for me that even when I don’t feel completely myself, I can always walk.
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.
No surprise I have been taking it pretty easy the last couple of weeks and not find much time for walking or yoga but more time for sleeping and working on getting back to base-line. Once I am feeling like myself again I will see an increase in my activity but as much as my body needs I’m providing rest without guilt.
Weekly total – 89,063
Daily – 12,723
Miles – 34.2
Floors – 173
My stats are low this week and not because I have been focusing on yoga, in fact I’m really just trying to do either walking or yoga each day and resting a lot. I have been to the doctor’s a few times in the last week trying to figure out where my levels are, what the inflammation is doing and if I’m experiencing changes in my MCTD. I haven’t been able to get back to base line and it has been awhile now so it is time to investigate other things and just make sure I’m not progressing in a way I shouldn’t. There is always a chance my MCTD could progress or change to another type of autoimmune but I also know that I do what I can each day to ensure I’m doing the right things so I cannot stress over the “what if’s” and just need to focus on the here and now. Each day is different and right now although I’m not feeling myself I am certain I will find the right combination to start feeling better again soon.
Weekly total – 90,440
Average daily – 12,920
Miles – 34.81
Floors – 151
I fell off the edge of a flare into full blown flare. It was nearly 290 days but unfortunately I go back to zero and start over. I am not at my base line yet and I know I have to be very kind to myself as finding base line again will be difficult and it may be different. It seems every base line changes from time to time. I did increase my prednisone to try and help the symptoms and feel better but then I have to come back down off of it which is challenging for my body. This body needs things right all the time and I have not been handling my stress and work life very well. Is this my trigger? Is travel my trigger? Is adding hours of yoga to an already full day my trigger? I don’t know what my trigger or triggers are but I do know that I am starting over and have to take it 1 day at a time again.
Truth is, I feel completely bummed by it. I forget sometimes that I even have MCTD until I am quickly reminded and my body decides that now is the time to stop react and remind me to take it easy and get things under control. Until I find this control I will be resting, walking and doing my yoga. Speaking of walking, I also have my stats for the week
Total steps 90,025