Ms is getting worse
in the last several months my mood has been down.my MS symptoms have been getting worse. It was a time of adjustment. It was very hard to accept the level of disability.. I have lost my best coping strategy. Reading has gotten me through the hardest times of my life. The nights of pain I would read. In the last six months my eyesight has deteriorated greatly. I can no longer read books. I have a lot more arm and hand spasms. So doing things is a lot harder and there is a lot more I cannot do. it has been harder to drive my power wheelchair. I have not been able to go home in a year. Even driving my wheelchair around the hospital has become very difficult. My arms and hands spasms so much that I have trouble feeding myself. So emotionally I've been in a very dark place.For months I have stayed in my room. Some days I did not get out of bed. My MS symptoms have gotten worse I have been sick. I had no energy. Doing anything required energy I did not have. I did not want to use the assistive devices. I wanted to do everything myself and not ask for the extra help.
I do not know what happened or if I just needed time. I am enjoying life once again. I have gotten the Dragon naturally speaking software. So I can once again type on my computer. It is great instead of typing I speak and the software types for me. This has allowed me to enjoy my computer once again.
I am getting a new driving system for my wheelchair. I am going to have a touch pad. It will be a lot like a mouse pad on a laptop. I will be able to drive my wheelchair with one finger. I am going to have a tray and the touch pad will be held on to the tray by Velcro. This will allow me to go from left-hand drive to right hand drive a very quickly. They are also going to put arm pads and elbow blocks so my arms will not fatigue. I was told by my occupational therapist that this will allow the to use my chair more without the hand and arm spasms.
I also have started using talking books from the Canadian national Institute for the blind. It has given me some of the joy I got from reading.
I also got A writing aid. It holds my pencil for me. It allows me to once again to the crosswords in group. I have once again started to reach out. It seems I have come to the light at the end of the tunnel. I am learning to accept that assisted devices and I am once again filling my days with activity that has meaning. I am leaving my room and interacting with other patients and volunteers and staff members. The dark emotional void that I have been living there for months has dissipated I once again feel joy.
I have decided not to fight the MS symptoms. Taking the high-dose steroids each month has caused health problems. After last month dose. I got a bad kidney infection. My blood count also went down.
I think I am finally accepting I have MS. I am living with the symptoms. And finding ways to enjoy life despite the disability.
I am asking for help with my personal care. I am using the assistive devices. I am once again leaving my room and talking to friends. The nursing staff have noticed a big difference in how I am talking and acting. They think it is great that I have turned the corner.
My life is enjoyable and I find it is once again meaningful. I am helping other patients just by talking to them. There are a lot of patients who are very lonely. So taking time to talk with them help them and by doing so it helps me.
I have asked volunteer services to set me up with volunteers. They can assist me with the various activities that I need help with.
Sometimes it is the hardest thing to do to ask for help. But once we do we find meaning.
I do not know what happened or if I just needed time. I am enjoying life once again. I have gotten the Dragon naturally speaking software. So I can once again type on my computer. It is great instead of typing I speak and the software types for me. This has allowed me to enjoy my computer once again.
I am getting a new driving system for my wheelchair. I am going to have a touch pad. It will be a lot like a mouse pad on a laptop. I will be able to drive my wheelchair with one finger. I am going to have a tray and the touch pad will be held on to the tray by Velcro. This will allow me to go from left-hand drive to right hand drive a very quickly. They are also going to put arm pads and elbow blocks so my arms will not fatigue. I was told by my occupational therapist that this will allow the to use my chair more without the hand and arm spasms.
I also have started using talking books from the Canadian national Institute for the blind. It has given me some of the joy I got from reading.
I also got A writing aid. It holds my pencil for me. It allows me to once again to the crosswords in group. I have once again started to reach out. It seems I have come to the light at the end of the tunnel. I am learning to accept that assisted devices and I am once again filling my days with activity that has meaning. I am leaving my room and interacting with other patients and volunteers and staff members. The dark emotional void that I have been living there for months has dissipated I once again feel joy.
I have decided not to fight the MS symptoms. Taking the high-dose steroids each month has caused health problems. After last month dose. I got a bad kidney infection. My blood count also went down.
I think I am finally accepting I have MS. I am living with the symptoms. And finding ways to enjoy life despite the disability.
I am asking for help with my personal care. I am using the assistive devices. I am once again leaving my room and talking to friends. The nursing staff have noticed a big difference in how I am talking and acting. They think it is great that I have turned the corner.
My life is enjoyable and I find it is once again meaningful. I am helping other patients just by talking to them. There are a lot of patients who are very lonely. So taking time to talk with them help them and by doing so it helps me.
I have asked volunteer services to set me up with volunteers. They can assist me with the various activities that I need help with.
Sometimes it is the hardest thing to do to ask for help. But once we do we find meaning.
Replies
I am so happy for you it sounds like you are doing very well. A entity did some modifications on my house. Ramp to come in the house some work in bathrooms it makes it a lot easier living in my home. I am glad you are in better spirits stay strong my friend!!!
I am so glad you have taken a fresh approach to things and feel better about it. I too, have a really hard time asking for help. I feel guilty asking anyone in my house to do anything. Therefore, they do nothing. I am wearing myself out doing it all while they watch me or just ignore me but I can\'t seem to bring myself to ask that they do any of the housework. I admire your courage.
Gentle hugs and joined at the heart, Linda
You are an inspiration! Thanks for sharing your journey.