MGA News July 1997

I live with Myasthenia; at first it seemed to rule my life, all our lives. I do not have the illness - my husband Jim is the one who has MG. At first all help, advice and comfort went to allay his fears and get him back on his feet again.

What about the fears of the FAMILY, at first getting a name for the illness was a great relief, no more "24 hr/48 hr/72 hr Virus", "it’s all in his mind" etc etc. We would get help now or so I thought. Month after month going to Hospital and seeing a Neurologist while Jim got worse, I could see him going from a person who could climb mountains to a person who could hardly walk around the garden. Why was Jim not responding to the treatment? Life got worse for all of us, where would it all end? Our GP finally arranged for him to go to the Royal Free Hospital in London. He had to go to London on his own by train; thank goodness we have friends in London who would meet him at the station, I was so worried, I could not leave the children and I felt so guilty, putting Jim on the train by himself as he was so ill.

Would he come back to us, or if he did what would he be like? My chin had to go up & up. A brick wall was slowly being erected around me, trying to be the strong one in the family for my husband and the children; it had always been Jim who looked after us all.

I knew nothing about the illness. Worry is not an easy bed fellow. Thank goodness I have good friends, I could go and have a good cry and get my worries off my chest. It was a very long six weeks, I was now back in the working world after a break of 15 years, I was not feeling very well and our GP thought I had burned myself out with all the worry, I began to lose weight. By the time Jim came home I had lost one stone, I was diagnosed as having Thyrotoxicosis..

When Jim came home he was not very well, but better than he had been, but changed. No longer the healthy out-going person; mood swings, black moods all very hard to understand. I was so tired and still working, the children at school not understanding what had happened to their father, a mother who was tired and shouting WHY?, WHY US? The hospital gave Jim a booklet telling us about MG. This helped to explain what was happening to Jim, but at the same time did not lessen my fears - respirators, wheelchairs - where did it all end, what would become of us.

Our eldest daughter Karen would not talk about her father’s illness, our son Ewen became very angry, our youngest daughter Clair went off the rails slightly. The worry and not feeling well, the rows, arguments all this did not make happy families, I was at my wits end, trying to keep us together as a family. Friends were very good at listening to me, but they did not understand about MG. One day I found myself in the basement kicking a cardboard box, tears streaming down my face (I have to admit now that it got rid of a lot of frustration). Another day after yet another row with our youngest daughter I went to get the car our of the garage, I sat in the car and turned on the engine thinking how easy it would be to end it all here and now. Realisation set in. This would not be fair to Jim, he needed me more, but life was so bad nothing seemed real. What was going to happen to us. For six months he had been off work, what did the future hold.

I sat down the next day and had a good long think, there must be something good in my life, what? Look for one good thing, Jim still loved me, the children were not bad, I had good friends - there were three good things in my life! Yes I would take it from there, one day at a time - look for something good each day. I was now feeling better, I was in balance with the Thyroid, Karen had passed her "A" levels, Ewen his "O" grades, we were all coming to terms with MG. We were pulling together, being there for each other, Karen still not talking about her dad’s illness, Ewen less angry, Clair still a worry at times, yet life went on. We all came to terms with MG each taking a different route. A long year had passed and Jim went back to work, I stopped working full-time and began a part-time job, hopefully my worries were over. I came home one lunch time to find Jim ill again and a very worried Clair. I telephoned our GP and went back to see Jim, I knew at once that something was very wrong, his throat muscles had collapsed, a 120 mile dash to the Southern General Hospital in Glasgow followed. The worries came surging to the surface again, can I cope? Can I be strong again? At least this time I could drive to Glasgow to see Jim.

While Jim was in hospital the ward sister asked him if he would like to have a chat with a gentleman from "BAM" (now MGA), the gentleman introduced himself as Alex Jenkins the Scottish Councillor. The upshot of this meeting was Alex came to visit us at Fort William along with the late Christina MacMillian then Care Officer for Scotland. What a wonderful day that was, Christina and Alex put our fears to an end, Jim had a good chat with Christina and I with Alex. He had been in the same position as myself, as his wife had MG, Alex knew exactly what I was talking about. I could see quite clearly now there is life after MG. I repeat there is "LIFE".

Jim was asked by Christina and Alex if he would become a representative for the Highland and Islands, we became part of the MG family. After two years Alex stepped down as Scottish Councillor and Jim was voted in. This was a huge step as he still tired easily and could not travel very far, but we could keep in touch with everyone by letter or telephone. By this time Jim had retired from work, Karen and Clair married and Ewen working, all fundraising for MG along with friends, a Sponsored Walk one year, a Fancy Dress Climb of Ben Nevis next year, life was jogging along, fears and worries sliding to the back of our minds. Once again MG reared its head and again Clair was in the house when Jim’s throat muscles collapsed, thankfully he did not go into hospital this time.

Clair has been a great help to me, from being such a worry she has turned into such a caring person and will listen when I am worried about her Dad, it has taken Karen a long time but she can now talk about her Dad’s illness and Ewen is always there to help. Jim has had quite a good spell during which we set up the Scottish Forum bringing the branches and representatives together. Then Jim was asked to become a Trustee for the Charity by Geoff Buckley, he accepted (what a long way he had travelled in fifteen years). One draw back was that he could not travel such a long way on his own, so I had to go with him, later I was asked to become a Trustee, what a daunting thought, what could I bring to the Charity? Then I knew "the families" I could talk to them, listen to their fears and worries, let them know you can have life after MG. Take life one day at a time, it may not be the life you hoped for but you can go on holiday, to weddings etc, say yes to all invitations, we will be there if Jim is well, do all you want to do on the good days, lie low on the bad days, change, adapt, adjust your lifestyle, have lunch out if you can’t go out for dinner. Jim can drive again, at first it was only a short distance then he could do a bit more, but we always share the driving even when he is well.

I now find life can be good, but it is the simple things in life that gives me most pleasure, having my husband and family (which has grown, we now have eight grandchildren). In fact living with Myasthenia is not as bad as I first thought, we have all pulled through, the family all involved in some way. Clair did the drawing for our RAG DOLL LOGO, Karen, Ewen and Clair along with friends have just done a parachute jump to raise funds for MGA. I know life with MG will have its up and downs but it will never take me down with it again, I have the MG Family behind me, I only have to make a telephone call and I have all the help and support I need to take me through the next crisis. But mostly I have learned to live with MG.

MGA NEWS July 1997

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