I went in my pool yesterday for the first time in almost 4 months. It’s the first time I even swam since the middle of January when I was away. My elevator was broken for so long and it is my elevator that is attached to the building with the pool. For me in my wheelchair, I have to go outside to get to the pool when my elevator is broken because otherwise there are steps. Other people wouldn’t have…
This morning I was watching people get in their cars and head out for work. There was a part of me that was jealous. Jealous that their life was easy in a way mine wasn’t. I stopped working three years ago. Since then I had to get an aid to assist me 5 days a week, I’m in a wheelchair when I leave my house and I now drive a handicap vehicle. That’s a big change from the days when…
You’d think a simple game like mahjong would be easy for someone with a chronic illness. Any game card or tiles. After all you are just sitting at a table all day how hard is that? Well now add in a weakened core muscles and for some a hint of cognitive difficulty and the simple task isn’t simple. For me, it’s the core muscles. It’s those muscles that hold your body up helping you sit at that card table. It…
Another beautiful day in NY. I love watching the sun glistening off the waterI’m sorry my picture doesn’t do this any justice. I had a long day yesterday getting back to my normal life post infusion. It started with a double therapy. That was physical therapy followed by occupational therapy. I thought putting them together might make my week easier but it didn’t make my day easier. I followed that 2 hour of exhaustion with an eye exam because why…
I had my infusion Friday and today is Tuesday. I woke up not feeling well. I have a bad headache. My body just feels heavy. I am so thankful I had nothing on my schedule because the thought of going out is overwhelming. I’m even taking today as one of my exercise off days because I just can’t. This is the feeling I was concerned with post infusion. Yesterday I felt pretty good although I got very tired very easily….
I had my full dose of Rituxan Friday evening. The weekend was fair. Yesterday, which was Sunday, I didn’t feel well but I think that was more steroid related. Today I woke up and I felt better. I find I fizzle faster. I have gone into bed before 9 both nights and slept well. Even waking up to use the bathroom has been minimal. I have worked out each day refusing to give in to the fatigue but I do…
I never thought at the age of 47 this would be my life yet I remember being scared when I was diagnosed of being in a wheelchair. I knew what multiple sclerosis could bring about and I feared that when I hit the 10 year mark everything would go downhill rapidly. That wasn’t the case because there were medication developed that helped to slow down the MS progression and more and more have been developed. My life took on a…
First time back in physical therapy today. I should get double activity points on my Fitbit from this and it registers as nothing. I was there for almost 90 minutes and it’s all exercise that it so difficult to do. I mean I’m struggling doing leg lifts with a 2lb weight on my ankle. My sit to stands needed assistance from the therapist so I could either get up from the chair or not fall over once I’m standing. Then…
I’ve had a week to rest since my vacation and I have to say I needed it. I did do my Beachbody Cize workouts every morning. I did get food delivered and cooked. I did reorganize myself,but other than that, I rested. Today I’m going to occupational therapy. This is the easier of the therapies for me because it doesn’t normally wipe me out for the day. I can’t complain my MS symptoms have been somewhat mild this week. Yes,…
Doesn’t take much to exhaust someone with multiple sclerosis. For me it was being out late two nights in a row. I’m paying the price now. Just exhausted. It’s unfortunate that the body can’t handle the simplest of activities. I went out for dinner the first night. Sitting with my friend chit chatting for hours. Far from a strenuous activity. Last night was hair night. Mom and my six week ritual of spending an entire evening in the hair salon…
