How was your weekend? Despite the scattered showers, it was a nice weekend here. The nautical mile, two blocks from me, starts amping up full speed as of this weekend. With three of the most popular bars being right across from me, it gets very noisy. Unfortunately, the music blends between them so you can’t always make out one song from another. I am always happy at the start of the season. I love the hustle and bustle of the…
I had a good week. I shared my video of me walking in Wednesday. I walked even more during my PT session on Wednesday afternoon. I guess it wasn’t a video fluke of a good MS day. I am actually strong enough to take those few steps. I still can’t get up from my comfy chair but I certainly have hope. I even hit another milestone this week. I had my hair straighten. I had to sit up in my…
I was sitting up at the end of the bed when he got there. I popped right up to stand. My PT therapist said try to take a step. I was standing up with one of those silver walkers. Well, I took a step. It was my first step since the end of December. I then took another and another. I was going forward and back in the small space of my room. I was getting tripped up having to…
I’m actually writing this on Thursday evening. I had a long day. Since the change in my aides shifts, I am up at 7am. This morning I was up at 5. I had one of those MS symptoms that plague me whenever it is a inconvenient time. My feet were in pain. More like my heels. I felt like pins were simultaneously sticking into both my heels at the same time. Neuropathy. I know it well, but this time it…
I woke up yesterday and felt really good. I got up, into my wheelchair and I finally was able to stand on the scale. I held my my balance for a split second allowing the scale to actually show an accurate number. I was 138, fully dressed. I never weighed myself dressed. That is 3lbs from my ultimate weight goal. A goal I never even thought was going to ever really happen. Well I guess there is something to say…
I’m not grey anymore. My daughter dyed my hair yesterday. A grueling experience. Not because of her, but I had to sit in my wheelchair for an hour. I have been really tired this week. On Monday I wrote I blogged I wasn’t having any reactions to my Rituxan infusion. Today I have to admit I might be having a reaction to my Rituxan infusion. I am definitely feeling run down. What is really worse is my hands. I’m not…
Another week, another month. I can’t believe it is May already. I feel like I missed something, like two months. It’s a bizarre feeling, 4 months went by and I did nothing, but they flew. I have been in bed for 4 months!!!! When I wasn’t physically sick, I had some dark days mentally. It was very easy to to give up. It still is. In a conversation I had with both my daughter and my life coach, I make…
I actually got out of bed and ate dinner at the table last night. I am tired of being in this bed. I might not have endurance. I might not be able to take a step. I can usually transfer to my wheelchair with some assistance. Key word is assistance. The aides that I currently have, that “assistance” is questionable. My weekend aide is lovely but her English isn’t good. I would have to translate instructions to her for everything….
On Monday something strange happened with my hands. I actually shouldn’t say strange because this symptom happened every time my fever spiked over 102 degrees. My hands became claws. I call them claws because they fold in and makes it very difficult to grab and pick things up. The better definition lies in this post. https://multiplesclerosis.net/living-with-ms/shaking-curled-claw-hand. I couldn’t hold my fork eating a fruit salad. I tried to eat a muffin and I dropped the thing 4 times before I…
I am very slowly getting some strength. The key word there is slowly. I knew I would need to have a lot of patience. I just thought maybe there would be a little muscle memory. Unfortunately, my problem was because of muscle atrophy, not muscle weakness. It is not so easy to rebuild muscle 24 years into your multiple sclerosis life. I couldn’t maintain the muscle I had before I ended up in the hospital. My disability always got worse…
