Hello friends,
Another eventful week has passed. Last Friday I saw the rehab physician who has cleared me to work four days a week. As you already know I also picked up my puppy on Saturday, so I was happy to have a long weekend to spend with him. I had a great 4th of July, with great friends. I hope you did as well! I was really surprised by my puppy though. After the cookout, I decided not to go to the fireworks because I thought the noise might upset him. Imagine my surprise when he went to his bed and slept through it all! I suppose I shouldn’t underestimate him.
This week I ended up working Tuesday, Wednesday and Thursday because of the holiday. It is the first time I have worked three days in a row since April. I am feeling stronger and stronger, but by the end of the day I am usually pretty tired. I have to keep pushing and working hard to walk. Every day my shoulders feel more abused. This just isn’t a long term solution for me. I do not believe that my recovery has plateaued. I WILL continue to make improvements and gains. I have been working very hard on the mental and physical training that I need in order to walk. I cannot say what the future holds, but I can say that wheelchair/crutches are not permanent. It may be one day and I can accept that, but I just believe in my heart that that day is not today.
It is still very hard for people to understand what is going on with me. So many times I have been asked,”If your legs work, why can’t you walk?” While I am no longer dizzy or nauseous, my ability to balance and coordinate the orderly movement of my legs is still quite impaired. When I stand without support, it takes immense concentration to remain upright. If I close my eyes or become distracted, it all falls apart. Without the visual cues and constant internal reminders to ignore the feeling that the floor is tipping to one side or the other underneath me, it is a major struggle.
There has been so much improvement since this all began, but it is still a little frustrating. I mean I trip over my own feet like a toddler. The best way I can describe it is that feeling you sometimes have when you have been out on a boat in rough water, then return to land. It’s the sensation that the ground is moving beneath you, swaying from side to side. You know it isn’t possible but you feel it all the same. The problem for me is that it never completely goes away. Some days are better than others and I am learning to get used to it.
With that being said, all my work is starting to pay off. Today in therapy I have finally made the move to using a cane. I am significantly slower than I was on the crutches or even the wheelchair, but I don’t care. Being on the cane puts me one step closer to walking independently. My therapist tells me every week that I have to slow down and take things easier, but it just isn’t in me. Today they wanted me to walk for five minutes then rest for three. Can you imagine how long it would take me to do anything?! Maybe it’s the ADD, but that is just outrageous! We finally agreed to 15 and 5 instead. The therapist says I am driven, but as if that were a bad thing. It’s just who I am. This disease may have changed my life in many, many ways, but it can’t change my character or who I am as a person. I will continue to push, but I will try to push a little more slowly.
Bit by bit, day by day I am getting my life back. I appreciate every challenge and celebrate every achievement. It may sound strange, but in a lot of ways I am thankful that this has happened to me. I am so much happier and more satisfied with my life. I have so much clarity and take joy in each day. I just wish everyone could see that and understand that there is no need to be sad or feel pity. I am so much better than I was before. This disease may have weakened me physically, but mentally and emotionally I am stronger than ever. I finally understand that while I am responsible for my life and my actions, no amount of determination or defiance can change my path. Where I am is exactly where I am supposed to be. I am learning to enjoy the journey instead of constantly trying to commandeer the wheel. I know that I am in good hands ;-)
Thanks for listening. Talk to you later.
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