SOME HINTS ON COPING WITH MS.

Here is a collection of my thoughts and ways of coping, I’m not an expert, and as I’m newly diagnosed myself, I’m still learning and researching about life with MS. However, I thought I would jot down some of the things that have helped me, and that have been passed onto me by others.

I think the most important thing to remember is that MS is not a death sentence, it’s not the end of your life, you just need to adjust to a different way of life, and re-set goals/ priorities etc. Remember, there are many people in this world worse off then you! There are many things you can still do, maybe you need to do them slightly differently, or modified, but they are still achievable. Of course each person is different, and MS affects us all differently, we all have slightly different abilities/ disabilities, and will all have varying degrees of support around us. The key is to lock into whatever support system you have, and use it. Also concentrate on your abilities / strengths rather than your disabilities/ weaknesses. Try to keep a positive attitude, which isn’t easily done sometimes. Keep a sense of humor, this is a great help, especially when things seem bleak. Try to look for the ‘funny’ side of things.

One of the best things you can do is get a good, strong and understanding medical team around you. People who you can relate to, and who are willing to LISTEN to YOU. It is vitally important to have a GP, Neurologist, Physiotherapist, Occupational Therapist, and whoever else, that is going to understand MS and YOUR needs, not just a ‘textbook’ carer. Nothing about MS is a ‘textbook’ case. YOU need to feel comfortable with these Professionals about ANYTHING that is worrying you.

It is also important to be able to talk openly about your feelings and worries with other support people eg. Spouse, family, friends and carers etc. Remember they are not mind readers; you have to tell them if you’re not having a ‘good’ day, or if something is worrying you. Remember the old saying: A problem shared, is a problem halved.

I’ve also found it very helpful to talk with other people with MS. This is where I’ve found the OZMS Forum to be great. They are very supportive, and help me thru the times when I’ve been feeling ‘down’. They’re all very friendly and have a great sense of humor The Group also has some great links to other MS information and sites.

One thing I’ve found helpful is to trying to keep busy. If you sit around thinking too much, you are likely to start feeling ‘down’ and loose the motivation to get things done. Life goes on. However, if you are feeling down, talk to your Dr, as depression is common, and you may need Professional help. There are many things you can do to keep busy.
Use the internet to research, join support groups, try your hand at building a web site (its not that hard, and there are many easy to use programs around to use eg. Tripod, Geocities and many others). Keep a journal of your thoughts and feelings. Write your experience as a story, or maybe write poetry etc. Go to your local library and research. Find a new hobby. Just don’t take on too much all at once. One thing to learn is some relaxation techniques, so you can make the most of your rest and sleep periods. I have found some ‘relaxation’ CD’s and Videos/ DVD’s very helpful. There are some good ‘breathing’ techniques around too.

Keep active, within you capabilities. If you are doing physiotherapy, ensure you keep to a routine for the exercises; maybe take on swimming as an extra exercise. For me, this web site has been part of my physic, as 4 weeks ago I couldn’t use my left hand for typing, so computer work became part of my occupational therapy. Going for short walks has also helped me to regain some of my balance and is building my stamina, which eventually helps with the fatigue problems. Your health professionals will be able to guide you into the areas best suited for you, your needs and abilities.

With coping with everyday life, there are many things that can make life easier for you. One of the keys is to adjust the way you do things to help conserve energy, which will help with the fatigue problems.

- Plan your day, don’t cram too may things into one day.

- Plan ‘rest’ periods, after each ‘activity’ eg. If you are going shopping, plan to have some ‘quiet time’ before starting another activity.

- Learn to delegate. Ask someone else to do some of the day-to-day chores. A roster system may work for your household for chores like: washing, hanging washing out, sweeping, cooking, dishes etc.

- Another thing I’ve found helps with fatigue is eating a balanced diet. Eating small meals often, but not over-eating will help with maintaining energy levels. Fresh food is best, the less heavily ‘processed’ food the better, as the body usually finds processed food harder to process, (thus using more energy).

- Writing all appointments and commitments on a common calendar that is easily accessible to everyone. This way there is less chance of over doing things, and everyone will know what is going on within the household.

- Have a small whiteboard handy in the kitchen (I’ve got a magnetic one on the fridge). As people think of things that need to be added to the shopping list, write it on the whiteboard. This makes finalising the shopping list a lot easier. You could do the same for jobs to be done etc.

- If you don’t have family living with you, enquire about ‘home help’ from your local council etc, or ask a friend or neighbour for some help.

- Contact your local MS Society for help if needed, your health professionals may also be able to help steer you in the right direction.

- Don’t be afraid to speak up and ask for help. There is help out there; you just have to plug into the right resources.

The most important thing is to learn to say ‘No’, or ‘Now is not a good time for me’ and to ask for help when you need it, even for small things.

And please remember, these are only my thoughts and ideas,
Do your research, however, in the end, you have to do what is right for YOU!

 

I plan to add to this site over time, so please come back to visit, and don't forget to sign my guest book on the main page, thank you.