Being Positive

Out with the family

It is important to find ways of doing things that YOU want to do. For instance, I like playing the board game Mastermind, which I know other people find boring, so I position myself near the computer or with my back to the TV so that my companion can use the computer/watch TV whilst playing.

Positive people

A big help when suffering with MS is the people around you. It is not good to be surrounded by people who just feel sorry for you and express pity. You need people who you can laugh with and can make jokes with, and ultimately people who make something good out of a bad situation. I have a friend with cerebral palsy on crutches who calls himself a 'spaz' (it  is something that he can say, but nobody else can)- you really need to be light-hearted when there's nothing you can do to physically change things. This is something that my family are very good at. We can tell jokes and bad-mouth each other. We are even seen as unkind by visitors to the house but it does actually keep me happy and amused! There are even some people who are close to me, like my parents, who find this very strange and the children's friends think it odd that they are so cheeky to me, a woman in a wheelchair.

It is very important to ask the public to converse with you and not to reply over your head to your companion, as not only is this rude,  it's demeaning and unnecessary. People must not stand with the sun behind them which would make them a silhouette. This would impair lip reading and also be blinding for you, so people should sit down and be at your eye level when communicating.

There are a lot of support groups out there e.g. young carers. But you will have to be proactive in finding the different groups as information is not very forthcoming in the media. Your local county's MS group will be able to help.

You must make the most of yourself i.e. not looking like a sack of potatoes! It is Important to wear nice clothes and to do your hair and make-up, dye your hair, wear jewellery and for women to pay attention to their personal grooming i.e. eyebrows, shaving legs, armpits (men to shave well!). Not only will this make you feel happier it will also give a positive image of yourself to others. This does not have to be expensive, charity shops are wonderful places.

It is very important to focus on all the positives, in what appears to be a big negative but sometimes just one positive thing can cheer you up. For instance, I might go through periods when I have bladder infections which means I get wet knickers and trousers. Yes, this is very depressing but I have to remember, if I'm dry in the morning, last night was a good night and therefore be thankful. "Have a happy heart not a heavy heart" Quote from GP.

Look, no bald patch!

I went through a period when my hair became very thin at the back, due to lying on my back in bed, I even had to have a style that covered the bald patch. A friend of a friend had a three month stay in hospital after an operation, and was suffering tremendously with very thin hair and had a big bald patch. One of her nurses recommended she use a silk pillowcase, and she found it helped tremendously.

So I tried this and it has helped me as well. I can now have the hairstyle that I want.

I can do things that I want to!

Getting out

I used to cycle but I can't now as my legs are immobile, so my husband has adapted an old wheelchair which he can tow behind his bike. This was difficult and had to be done carefully to be safe. The wheelchair wheels had to be removed and adapted by a mechanic friend, which now gives me a wide wheelchair base (a bit like the Paralympics basketball team) and provides better balance. The chair also had to be adapted with rubber cushions/headrest/safety belt, but it was all possible and is great. Now I can be lifted into the chair and join the my family on bike rides. It means I can join in charity rides, pub crawls (at least I wouldn't be caught drunk in charge of a bicycle!) and fun rides, and simply enjoy the country on the National Cycle Network.

Sometimes you need to think outside the box to find a positive solution. Lateral thinking is important.

Independence

It is very important to maintain as much independence as possible so I have been given a Possum Intercom system supplied by social services. This is a remote control that can be set up to operate a range of items. For example, mine can operate the TV (volume and channel), stereo, lights, door intercom and even make phone calls to numbers saved onto the memory. Basically, it can be set up to operate almost anything electrical that suits your needs. The most important thing on mine is the pager, which sounds a small buzzer (which can be taken anywhere within about 100 feet - mine is left in the hall usually, but will work if taken out to the garden) to let someone know I need something.

Sarah