I am once again finding the need to rein myself back in for a reality check. I seem to have a personality that makes it impossible to be completely honest with others or myself. When asked how I’m doing, I always respond, ‘great!’ ‘I am so much better, I am so blessed, I am so lucky!’
The truth is, I am not great. And I may never be great. I talked to my doctor about how hard it was for me to stay up all day with the kids. How hard it is to work out for an hour a day. How hard life is in general.
She said that the truth about a Stem Cell Transplant is that I may never get completely back to normal, maybe only 80%. And to get there it may take 5-8 years. That is the reality. She said I was crazy for trying to exercise like I was. She said I was crazy to try to run at all.
She told me that I needed to be realistic about what I could do and I needed to start SLOW. Do 15 minutes of easy exercise, like walking, a day. And do ONLY those 15 minutes. I could increase it by 5 minutes every other week or so, but do at least 15 no matter how I am feeling. I need to get my body used to it again. I am starting from ground 0, and I am not completely healed yet.
This reality makes me cry at times. I keep expecting to be able to run miles again, and to keep up with everyone else in fun activities. But I cannot. I get too fatigued, and the more I fight this, the more it sets me back from recovery.
The reality of getting HSCT for MS is that it is designed and expected to stop further disease activity. It cannot make the damage that has already been done disappear right away. The damage can get better over time, but it is still there!
In order to make myself remember this and explain to you all why I need to be happy that I can walk 15 minutes, and smile during the day I am going to give you a sneak preview of the book I’m writing. This is a description of how I was before HSCT.
“My problems with proprioception were not the only issues plaguing me by the end
of 2012. I had also started a tremor in my hands, and I was having a hard time
writing at work. My handwriting has always been bad and coworkers had always
made fun of me for writing illegible orders. Now, it was so bad that it was no longer
a joke. When I was tired, they really could not read what I had written, and neither
I could not cut my own food at mealtimes. This was especially embarrassing in a
restaurant, but even at home, I hated handing my plate to my husband. I also started
dropping things. I simply could not work both of my hands together to do what I
needed them to.
At this point I could not work out at all anymore; I couldn’t even make it up the
stairs to my bedroom without resting half way up most of the time. Stairs became
my nemesis. My office building had a flight of stairs, and when I got to the top, I had
to stop and let my legs recover. They so hurt badly, it felt like I had just
done 100 squats with weights. People had started to notice.
In the course of only one years, I had exited the “Live” stage and moved
right through “Reality” into “Hybrid.” “Do anything” Rachel was a distant memory. I
could no longer tell myself to take one more step and feel confident that I could do
it—or that I would be safe if I did.”