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 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 went to my neurologist this morning for a wheelchair assessment appointment. I have an electric wheelchair plus my travel scooter already. My electric wheelchair isn’t in the greatest shape. I bought it online and it is so much better than the scooter but it doesn’t go exactly straight. It goes to the left. I’ve learned how to navigate with this issue but it is slightly annoying. The tires also need some help. Needless to say that’s why I was…
I received a call early in the morning that my aid’s son was sick she wouldn’t be making it to me for the day. However, yesterday was mahjong and I wanted to go. This is why I got a handicap van for my independence, right? So I decided I was going to go. I was more worried about getting out of my house without my dogs running out the door on me. I decided to be very proactive. My word…
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…
I’ve written about this before but it happened again yesterday and it really scared me. https://multipleexperiences.org/2017/01/23/multiple-sclerosis-serious-symptoms-respitory-issues/ I woke up not feeling well. I had this heavy feeling in my chest. Not like the MS hug symptom which is the tightening feeling through your chest like congestion, simple congestion in my chest. I just couldn’t produce a cough that would move the mucus up and out. I spent the whole day trying to cough, using my Doterra oils and drinking tea…
A storm was coming expecting snowfalls of 4-8 inches. I was excited to have at least one snow storm this winter even though it housebounds me. It is very hard to navigate outside with mounds of snow and ice. It is hard to walk if you actually have balance, which I do not. No walker in the world will assist me on snow and ice. My scooter also can prove difficult. It’s like being stuck in the mud in the…
I fell on Friday and slammed my head into one of my hangings on my lower cabinets. I was stunned for a few seconds when it happened. Everyone said “where was your aid?” She was right in front of me but it is difficult to catch someone when they are falling and she wasn’t close enough anyway. Technically she isn’t even supposed to catch me as per her agency. That part I can’t understand but she does anyway. My head…
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…
