The little things
I usually write here to complain and let you all know how miserable I am, but I just thought I would share some recent experiences with you. To me they are big things, and my husband is very proud of me!
I contacted one of the leading neurologists back home a while ago, just to hear stuff in Danish as well. She told me that with LGMD 2I I am allowed to work out at 80% of my recommended heart rate (220-your age or something like that), and that there really is no limit to how much I can work out. I got a pulse monitor and started a fairly hard work out program after Christmas. I work out in a hot water pool every morning (as I have done for nearly three years). In addition to my usual "light" weight training in the water I have also added jogging in the water. I started slowly on the jogging about a year ago, but have now increased my jogging to about an hour a day in the water. In addition to that I also ride my exercise bike for an hour every night. At night I am now able to keep my pulse at the 80% for most of the hour. Pushing myself a little has turned out to not be a bad thing, at least for now.
In addition to losing a lot of weight, I have also noticed small increases in my strength and functionality on a day to day basis. Walking has become a lot easier, when I feel safe my speed has increased a lot. Yesterday I also noticed a thing, that I am sure you may be the only people who can appreciate. I was able to put on my ear rings without leaning up against a wall, I stood in the middle of the room and put them on. I was able to keep my arms raised to that level without assistance. I know that to "normal" people this may seem like nothing, but to me it means that I am able to somehow increase, and maybe regain some of my lost strength. It has become easier to do my hair, and I have a lot more physical energy than I have had in a long time. My trainer at the pool thinks that I physically have become strong enough to walk up the stairs to get out of the pool, but that the connection between my muscles and the brain has been lost.
Now I just need to get the chemicals in my brain to stop playing games with me, so I can move on and hopefully find joy in life again!