I grew up in Berne, Switzerland, the middle of three children. I was a bit of a tomboy but that is probably normal seeing I grew up with two brothers. One of my most vivid and earliest memories is that of having Polio as a five year old.
I used to go shopping with a neighbour and normally, I would be skipping or running beside her but on this particular day I was dragging the chain. I remember feeling very heavy in the legs. On our return the neighbour commented to my Mum that I was not my usual sparkling self. Apparently I had a fever a few days before and Mum thought I might still be recovering.
I spent the rest of the morning in the playground and when Mum called us in for lunch, the boys ran ahead up the stairs to our appartement. I see myself sitting in a huddle at the bottom of the stairs, simply unable to move. I was scared, not only of the fact that I couldn’t stand up but probably more so that I would surely be in trouble with Mum. When I saw her coming down the stairs to fetch me I burst into tears, it was all too much.
My next image is that of sitting on an examination table at the Children’s Hospital. I am screaming because I have just been given an injection in my spine. The pain of it is excruciating and I am complaining at the top of my voice. Both Mum and the doctor are holding me down as I try to get away.
I had to stay in hospital and I remember standing in a cot, holding on to the railing crying my eyes out. I was told that I was there for a long time and became very homesick. So much so that I wouldn’t eat and spent a lot of time crying. My parents took me home and took me for treatment every day. My memory is being in a room full of equipment and I am in a kind of sling with my legs swaddled in hot rags. Exercises and regular check ups became the norm until I was fifteen. My Mum patiently had me picking up hankies and even knitting needles with my toes. My toes are very dexterous as a result of those early efforts. I luckily didn’t suffer muscle wastage but the leg and abdominal muscles had to be exercised to regain their strength. If my legs became tired from walking too much I would just collapse and for a long time I could not run at all . Poor kid, I had to wear ankle high lace-up boots with insoles. I was very unhappy about my lack of fashionable foot wear. Oh to have sandals for summer but school shoes became the compromise. By about 15 I was finally to wear normal shoes and it was from there on that I developed a serious shoe fetish. I adore shoes and over the years I have found it difficult to go past a nice, colourful and sometimes unique pair of sandals, boots or any other type of shoe 🙂
I can say that after 15 I didn’t spend much time thinking about Polio. I was considered of normal physical ability. I was not particularly interested in sport but one of my hobbies, ice skating, didn’t pose any issues for me. Once in Australia I became an avid walker both in my private and professional life.
Fast forward about 40 years and I notice that I often have to push myself just to get through the day. I can suddenly loose all energy; it feels as if I hit a wall and to go beyond is fraught with pain. Fatigue is becoming a contant companion. I am working so I just have to keep on pushing. I end up having all sorts of tests done to ascertain my problems but to no avail, its all in your head dear.
A conversation at the church door after conducting a funeral introduced me to the term post polio syndrome. It has been found that ca 40-50 years after having had polio, symptoms of fatigue, pain, muscle weakness and respiratory symptoms appear and these late effects have been termed Post Polio Syndrom.
I became interested what this might mean for me and I began researching online. Not only did I find a an Australian register for people who had Polio but there was also a lot of international information available. I contacted the Swiss Post Polio Association and apart from sending me their latest information, they referred me to a doctor who specialised in this area of medicine. Through him I learned that most Polio sufferers will have some symptoms but that not much can be done other than managing the condition and managing the symptoms as they appear. Muscle weakness is progressive but it can be managed. He advised to connect with Polio Australia, through whom I started to have access to education, research results, as well as personal support with other members. I have attended a national Conference as well as regular NSW Seminars and meetings.
I have started to give my body a chance to gain some balance. I have changed my attitude towards my way of Being. I rest to avoid hitting the wall too early in the day and these days I dont get to the point of losing all energy very often anymore. I listen to my body’s needs much better and at times I have taken recommended supplements to help the muscles repair better after exercise and strengthen the immune system. I find now that I allow myself to be boring and spend my evenings retiring early and taking a rest during the day, I can keep my physical levels of fatigue, muscle weakness and pain under control. I have just undertaken an in depth sleep study that will give me an updaten on my respiratory issues during the night. I had been using a CPAP machine but after some weight loss it needed reviewing.
And so the journey continues.
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