Today is 266 days of being flare-up free and now I’m really starting to think when will it come? Some might think that at this point I just should think it won’t happen again but my brain is going in a completely different direction. The other day I was dealing with a high level of fatigue and thought that was my first sign of flare, but not true. After my battle with fatigue I went to Bikram and felt a little dizzy after coming out of a pose where my head was below my heart. That was a first so again I thought; ok this is the beginning, but no not true. Yesterday I went to my weight training session and worked out hard with some serious heart pumping weight training and heavy weight so I was worried about being dizzy as well as what my body would do after. Today I woke up very sore but again no flare. I just finished my Insanity Class and although I was utterly exhausted and sweaty I felt really great. So why is my brain thinking the worst? I honestly think because I have not come to accept that my MCTD can truly take a back seat in my life.
For the last 10 years although I don’t dwell on it and I don’t let it stop me from doing what I would like to do, it has always been at the forefront of every decision I make. I chose to make decisions in my life based on feeling good or not and if I might not feel good for days after. In the past if I was completely exhausted I would shut down and rest, now I realize I can be exhausted while staying connected to family and my husband but modify my rest with fun ratio. For Instance, although I really wanted to stay home and rest on Sunday in the past I would have just said no my health comes first and although my health is still important to me, I went with my family and husband out but I just sat and rested while with them. I did sleep so well that night and probably better than if I would have taken a nap during the day.
I still have to listen to my body as everyone does but I don’t have pretend I’m the delicate flower my husband thinks I am. I am stronger than ever before and more determined to put this MCTD in remission. From the beginning of my journals I wanted to be able to say that my MCTD was in remission. Technically I don’t know how long I would have to go without a flare to be considered in remission and considering I still take all my medications daily maybe that keeps me out of the remission bucket but I do know that I feel great, I haven’t flared, and I’m trying new activities all the time with my new found strength.
The 3 biggest “S” for most of us is strength, sleep and stress. With strength, on any given day I can feel really strong and other days feel like I’m starting over again. With all the spinning, Insanity, weight training, walking and Bikram I have been doing most days I feel really marvelous but I do have chronically fatigued legs. Almost every day that I wake up I feel like I just did a heavy set of quad, hamstring and calf work the day before. Sometimes I have and others times I haven’t but I am really working my legs every day in some capacity and therefore the subtle fatigue is new, interesting, and a reminder that these legs are truly working hard most days. I give them a break during my Bikram and walking but my hamstrings remind me that they are there keeping up each and every day with my increased activity.
Sleep has been a big deal for me because there are many nights I sleep a ton and I wake up so well rested. All of a sudden I’ll have a night that I don’t sleep an ounce and it throws my next few days off. If I do a little activity before bed it seems to help but if I do a lot of activity my body just won’t rest. I love to sleep and I take my sleep very seriously. I know how incredibly important it is and my goal is really to get as much as possible.
On the other hand I realize that stress is a silent killer. I have a ton of stress and my body is constantly fighting stress. Living with MCTD is stressful, the amount of activity I endure can be a stressor, and life in general is stressful. We all try so hard to keep our stressor to a minimum and if we could we would eliminate it completely but I have not been able to exert that type of control in my life and guess that others have the same problem. It would be wonderful to reduce stress to almost nothing and live a peaceful quiet life. Perhaps one day I will find the secret and be able to do just that
As each day that goes by and I find my more days in my journal where I’m flare-up free I wonder if this is my new normal. I have gone 245 days and it wasn’t too long ago that I was striving just to hit 90 days without a flare-up. This morning as I was writing in my journal that I have completed 245 days without a flare-up I felt so accomplished. Not that I can control everything about my flare-ups so feeling accomplished might not necessarily be the correct emotion but it was there. I have been doing more travel for work and that can always increase my fatigue which can cause a flare-up. I did feel a twinge of a flare as well as a cold coming on but my super immune system took over the cold and the twinge of flare went away with.
I don’t know if the sore throat I was thinking was a twinge of a flare was really part of the cold but either way within a few hours it was gone and I was back to feeling good again. My base line is always changing in terms of fatigue, fluid increase or decrease, stiffness, sleeping or not sleeping, weight gain or loss, or even strength. As it stands now my base line for feeling good and managing my MCTD is at a record high. The swelling in my hands and feet is also at a record high which means my baseline of normal has changed. As it was presented to me, it is not only fluid but build of tissue that is part of the arthritic symptoms of MCTD. Although my doctor doesn’t believe there is much I can do about it I continue to research to see what I can find out.
Having swollen hands and feet is uncomfortable, makes daily tasks difficult but it is something that I have to work through. My strength has increased so much in my body with much stronger legs, arms, and core so as I’m lifting weight I find that the weight doesn’t feel heavy but my hands are not strong enough to hold the new weight I’m lifting.
For instance, yesterday was my training session and I had to grip a large weight with my finger tips for the exercise. The weight itself was not heavy but my hands and fingers were slipping and I could not grip it the way I need to. We adjusted and grabbed weights that had the same weightiness but that I could grip with my whole hand to help support it.
I’m thankful that the trainer I have now understands my situation and gets me as a person all at the same time. He will notice that I want to push through something but at the same time can tell that I’m just not ready and asks me to back off where I just might push through. He also notices when I’m energy is a little low and tries to help me get it a bit higher. There is so much I want to do and so much I can do but there have been times in my life that I didn’t know if I should. I trust that he will be honest with me about whether or not I should and then I can take it from there. Everything in moderation unless you are the type of person that needs more and then moderation just doesn’t work. When I first started seeing him he kept saying I need to see a down day. Now he realizes that Sunday is my down day. It is the day I go to Bikram, take golf lessons, spend time having fun with my husband or family and that to me is all about taking it easy but still staying active in life. We now work with this activity as part of my life and not part of my exercise routine.
I can use Insanity, weight training sessions, spinning, running and striking as my exercise but keep Bikram, golf and general playing as life relaxers. That to me means balance and that is what I’m striving for.