Life is filled with “Little Miracles”. Things that happen unexpectedly but amaze you. They aren’t big or earth shattering. When you tell other people about them, it may not seem like a big deal to others but for you they are. Well, one such thing happened to me today.
Since I started my Myozyme infusions, I’ve tried to manage my expectations. I know Myozyme has done good for some patients but it’s still more or less a case to case basis. It affects people differently. Some good, some less than ideal. So I’ve already told myself not to expect much. I’m not going to suddenly get up from my wheelchair and start dancing. No, nothing like that. In fact I’ve already accepted the fact that I may never walk again. My hope was to merely get off my breathing machine, even if it’s only during the day time. Lessen my dependence on my Bi-Pap machine. That would be fantastic.
I took my first steps towards that goal today. I consider today an exceptional day. I was feeling good and strong. I woke up without having a lot of coughing. My lungs seemed clear. I wasn’t feeling sluggish. I went about my morning routine. Stretching, assisted biking exercises and then onto my morning meal. I had oatmeal today with half a mango. I had some coffee with milk. Regular stuff.
I usually go to the bathroom afterwards to do my business prior to taking a shower. Now whenever I go to the bathroom, I don’t have my Bi-Pap machine with me but my aide and I developed a technique already to assist my breathing. Basically, he makes a fist and pushes it against my stomach in a pumping motion. This helps pump air in and out of my lungs.
After doing my business, I was transfered to the shower. I told my aide to stop pushing first. I wanted to try and see if I could breathe on my own. I tried it and felt good doing so. Seconds turned to a minute and a minute eventually turned to eight minutes. I was breathing by myself. Although not like a normal person. I couldn’t talk much, I was concentrating hard on my breathing. Towards the end I was desperately gulping in air. I managed to complete my shower though. I was transfered to my room without being assisted with my breathing. By the time I got to my bed and the Bi-Pap was placed on my nose, I was gasping and really thankful I’m breathing with assitance again.
I felt a deep sense of joy. I did it. 8 minutes on my own. Something I have been unable to do so in years. One thought kept me going while trying this exercise. That was the though of telling my parents that I was able to do this. I wanted to give them some good news. Something to show them that the past year and two months weren’t for naught. I’m showing some signs of improvement. The biggest of which is simply the fact that my condition has not gotten significantly worse. It’s remained the same if not slightly better. This is proof enough.
I called up my mom and dad to share the news with them. Both of them were happy.
I was able to repeat it that afternoon. But it was a little easier when I did it this time since I was on my wheelchair and I had a pillow on my lap I could push my stomach against. I breathed on my own for 15 mins, while getting my hair cut. I was exhausted after.
Little miracles. Nothing big for other people but certainly a miracle for me. It was definitely a good day.