Managing Day to Day Life With Multiple Sclerosis
Managing Day to Day Life With Multiple Sclerosis
Managing day to day life with multiple sclerosis is a roller coaster ride. One day you feel fine, the next you feel like a wrinkled balloon. Sometmes its a mental issue other times its a physical problem. Sometimes its both. I have passed the Relapse Remission stage of multiple sclerosis. For me its evolved into Secondary Probressive.
I worry
Will the new problems be with me for the rest of my life? Its the old old problems that need to be controlled. For me the root of the problem is doing too much.
Managing Day to Day Life With Multiple Sclerosis
Managing life with ups and downs makes planning incredibly difficult. Unfortunately this is part of the MS package so live with it. Accept it. Concentrate on making life easier to manage? Do something positive.
You are in charge
OK so lets agree that doing nothing is not a part of the plan.
- Always try to be in charge of the disease rather than the disease being in charge of you. This is not an easy strategy but who said life is easy.
- Living with MS is a state of mind.
- You need to have a positive state of mind.
Occasionally there is a bitter pill to swallow
People have described me as go-getter. I’m disabled and I cannot walk without something or someone to help me. I’m no longer allowed to drive. I am fiercely independent and I hate asking for help Sometimes I have had to relent. I have had to accept that my life has changed.
Life changer
This has meant tweaking things, adapting my coping strategy. MS is a progressive disease, so I am continually adjusting the things that I enjoy doing. Occasionally there is a bitter pill to swallow when I can no longer do something that I enjoyed and brought me pleasure. That is why MS and other progressive diseases are so hard to live with. It really is a life changer.
There are ten posts that follow on from this one
Plan B Have an alternative option
Walking is good for you One of the simplest and cheapest of all forms of exercise
Right tools for the job Use the aids that keep you safe but they wll change with progression of MS
A healthy life Try to take regular exercise
Multiple sclerosis and stress Think of ways of reducing of stress
Make time for exercise This helps the body and the mind to stay healthy
Always be able to ask for help Don’t try to be a hero, ask for help at the first sign of trouble
Manage your life and depression I talked for an hour and the counselor listened
You’ve been diagnosed with depression Learn to accept that you have MS
Make your life easier What can you do to make your life easier?
Hi Patrick
The new Welcome page looks good! When you say:
“I worry – Will the new problems be with me for the rest of my life? Its the old old problems that need to be controlled. For me the root of the problem is doing too much.
I worry more, much more, about how much worse it’s going to get!!! I’m not a negative person and up to now (my 70th year) I’ve always been a half glass full person. But this MS gets to you bit by bit. I do bounce back though with some new idea or possible treatment. At the moment I’m going back on LDN (low dosage naltrexone) after being off it for 2 years, which coincided with my worst period of deterioration, we’ll wait and see!
Hello John,
I am quite sure you are not alone. Anxiety is a killer but it is important to be a ‘glass half full’ person. Thats what I use to get through every day. Is there an active MS branch near you or an M?s thrapy centre in striking distance. There are people there suffering the same problems. Talking to other sufferers really does help to put things into perspective.
LDN. I tried it about 8 yearsago, not terribly impressed and stopped about 4 years ago. It was having no noticeabe effect on my SPMS. The same with cannabis and THC spray. I do accept that different things work for different people.
I believe there are two things which help to keep the MS at bay. Self belief and exercise. I am a busy person and I am responsible for the kitchen and cooking. I might moan about clearing up the kitchen but I’m sure it helps me to combat the MS. Also smiling helps.
Try to be positive, it really does help.
Patrick
Dear Patrick,
You are so refreshing to read. I feel the same way with this MS- Somedays good, some days-blah! (mostly tired!) But I just keep on goin’! Thanks for your optimism!
Kelly Connor