Often times, exhaustion is your worst enemy when you have MS. For me that happened last night. As tired as I was yesterday, I could not sleep. My restless leg syndrome was on full force. I had bad pain in my eye (still do even after pain pills) and just could not get to sleep. My legs are probably the worst. It’s very hard to explain to someone what the feeling is. My legs will jerk, I will have an overwhelming need to move them, yet that proves no relief. Often, the way I can get them to calm down is to take a bath. Unfortunately, the new room we are in only has a shower. I took a shower at 1 and again at 3, but it didn’t help as much. Showers make me nervous, I can’t trust my legs and I fear that I will fall. What a weird thing to say… I can’t trust my legs. But when you have MS, your body quickly turns into a different being. I don’t always know what it is going to do. So you learn to stare at the floor when you walk, stay close to walls and avoid stairs. You learn to compensate for things without even realizing it. I do this so much more then I even realize it. I pray that HSCT will be the answer for me. I go into this aggressive treatment with the mindset that it will stop my disease. I don’t expect it to reverse the damage done, but for so, so many it has. That will be a bonus for me.
Unfortunately, the pain did not subside she I woke up this AM, but I am pushing through. We had every intention of going out today. As you can see, Chicago had different plans for us:
This weekend, I caught up with some childhood friends. Over the past 20 years, we have lost the closeness that often happens as you grow up and move your separate ways. It has been a blessing to me as the group texting provides the comic relief i so desperately need this week. I also received the most amazing gift from my team in Texas. A framed picture of everyone wearing shirts in support of me and a shirt of my own. I cried opening it. What an amazing gift. I keep the picture near my bed and thank God every night for how blessed I am. When I put makeup on and get out of PJs, i promise to post a picture. Every text, facebook message, email or call stops me in my tracks. I can’t imagine what I have done to deserve such support. It gives me such strength and words can never express the gratitude I feel for that.
Tomorrow, I hope to post more about the next step of the HSCT process. This is the real deal and what will change my life forever.
PS – 4 more sleeps until my Rosie gets here.