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My Sister (Sylvie) has MS - A Reflection. (Page 2)

written by Matthew in the early 2000s.

It was not in my opinion even the friends and ideas the net opened up that were crucial in Sylvie starting to cope with MS. The bottom line was the eventual psychological decision she made that she was going to fight this and make the best of it she could for herself.

This included not being ashamed of having MS, a big thing I think for any sufferer the feeling there must be something wrong with them for them to be this way. A feeling, that never totally goes away?

Sylvie's statement that she was not ashamed was to do a parachute jump for charity and publicise this I the local press. Even though I went with Sylvie when she did this I did not realise how important this was for her!

It may not have meant she was confident about the future but I was an important step towards more confidence. It was also was good as it brought her new friends in Sheffield who met her because of MS and brought out the true friends in her previous circle of acquaintances.

Learning more about MS was important for Sylvie, the inter-net being an essential source. Sylvie kept finding new things that might help against her MS and would always experiment to see what worked for her. Sylvie the scientist won't mind me saying that she has probably made herself a human guinea pig in many ways as she has tried many things that have not worked.

To me the most important things seem to have been Sylvie's decision to make the most of her life no matter how difficult, finding the correct diet for herself, meditation and the ability to develop a life of her own for herself. One that is as near as possible to what she would describe as a normal life. One involving family, friends, a partner, interests, a purpose and eventually work.

I think that Sylvie has found a partner in Steve who accepts her for what she is and took her on (as a brother would always say about a sister), even though she had MS has been an important for her self-esteem.

It has been the combination of support from family, friends, a partner, having interests & a purpose that, have been crucial to her progress. The main reason for the progress is still Sylvie herself. If the person with MS will not or does not want to accept it then there is little one can do.

Sylvie has changed her MS from progressive to relapsing remitting due to her stubborn mindedness whilst we have seen others suffering get worse and sometimes die as they have decided they have had enough. I have an idea from Sylvie's experiences that can be tough and that it takes a lot to be pig headed about it. So again I will pass no judgements on others decisions as I have not suffered MS, I just thank god my sister is a stubborn so and so.

As Sylvie has learnt more about MS, so have I, from articles and information she has e-mailed me. My knowledge still is minimal compared with hers as I have not really been pro-active in gathering up information. By reading what she has sent me and listening to her when we chat I think I have picked up enough to be an understanding ear when she needs someone 'independent' to talk to.

I think that is probably the role a brother or sister can take up best being the person who is there to listen. To tell the person with MS that they are right when they are right and not to be silly when they are being tired neurotic and silly but that they should go to sleep or meditate in whatever order is best for them and that. That may sound harsh but the support is usually needed late at night when they do not feel it is right to talk to parents or partner. You as a brother or sister have to listen, agree, discuss and at the end of the conversation tell them to be sensible, as things will not seem half as bad in the morning, whilst realising that as they are so tired they will probably not accept anything you say.

You are someone they can talk to as they are making their own decisions, someone neutral (ish) who is not pressurising them. Who lets them be themselves, sensible, neurotic, many stages in between and does not judge.

Thinking about my role it has been to be there, there is not a lot more you can do in my opinion except be there when they need you. I know the whole experience has brought us much closer together as brother and sister, maybe this would have happened anyway but I'm not sure about that. Sylvie may say I've done more than be there and offer support but that is for her to say not me because in my opinion anything I have done in the process that has helped Sylvie cope with MS pales into insignificance compared with what she has done herself.

On this I can only say WOW

An Ode to Sylvie

Ramble on Sylvie’s MS 1

Ramble on Sylvie’s MS 2

What helps stabalise MS?

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