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…
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 had my full dose infusion of Rituxan yesterday in my home. Definitely the way to have an infusion. Got my dogs with me for some puppy love, relaxing in my chair and catching up on DVR. The infusion was started very late which was a downside. My nurse had an issue with a prior patient and an infusion that was already scheduled late was now started at 6:30pm. Rituxan, like Ocrevus, is a 5-6 hour infusion so you could…
Yesterday I wrote about the seriousness of weakened chest muscles and multiple sclerosis I’m scared of this MS symptom. I haven’t seen my doctor yet but I received some advice from people that I thought I’d share that would also help. Purchase an Incentive Spirometer . There are many types of spirometers but this one is used to help increase patients lung function. 2. A humidifier A smart idea to keep moisture in the air to keep congestion as loose…
It’s Valentine’s Day here which always marked 3 things for me: The lover’s or lack of one Holiday The weekend I moved into my first house with ex-husband The start of a major MS attack that lead to my diagnosis less than a week later Today marks 21 years ago that I was diagnosed with MS. Crazy!!! Almost half of my life I’ve spent with MS. It is hard to remember the times without the disease. Maybe that’s why I…
This week is about being happy in the place you are in today. I wrote a blog this week entitled my life today. https://multipleexperiences.org/2019/01/29/my-life-today/. When I’m writing a blog sometimes I don’t know exactly where my blog is going, the words just flow themselves. This was one of those blogs. I had a comment on the blog from someone that simply said “This blog brought me joy”. My reply was, “me too”. When I was writing the blog about my…
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,…
