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When I was about 15, I was always tired. In the mornings when I wanted to get up from my bed, I always fell down, almost into a state of unconsciousness. I just thought that I had low blood pressure. At the age of 19, my father died and it was a shock for me. When I was told about his death, I couldn’t walk, but after receiving some injections, I was okay again. In my 23rd year, and in the eighth month of pregnancy I woke up one morning absolutely paralysed. Apart from my head, I couldn’t move at all. After calming myself down, I fell asleep and after 8 hours of sleeping I woke up absolutely fine. After giving birth to my second child I started to have great pain in my back and my joints. I was always really tired. I thought all of this was due to the stressful life with my husband – who was an alcoholic. I divorced him, but he remained living in our flat and, for the next three years, continued to hurt me. Police interventions didn’t help me at all, so I helped myself - I changed the lock of the door. My double vision or little “white flies”, pain, headaches, fatigue were all the result of a stressful life. This is what the doctors told me, and I agreed. Sometimes in the morning, usually on Saturdays, when I got up from bed, I would fall down like a cut tree with an awful pain in my back. I would then stay in bed until Monday. One particular Monday morning, I hardly made it to the doctor but because I “was able” to walk, I was told I was a liar and that I was just too lazy to go to work. I was sent to specialists, but the results were coxarthrosis, paraplegia as well as many other possible things. Despite these results, I was still “a liar” according to the doctor. I used walking sticks and I kept working. I was a special need teacher for the young deaf and hard of hearing people. At lessons I was not able to write at the blackboard because I couldn’t stand up. I had to use sign language for the deaf children, but my arms hurt so much that I was not able to sign; I wasn’t able to even hold a pen. After the first lesson I was more tired than I used to be after six lessons only few years earlier. I didn’t live; I just existed. My daughter was only eight and she had to cook for me. I had to go in to hospital and after three stays (three times in three weeks) I was diagnosed with MS. After a “perimolografia” test I didn’t get back on my feet again at all. At the end of the three-week stay, I was asked by the neurologist if I wanted to go home. My first thought was, “am I going to die? They don’t want me to die in the hospital.” I was unable to breathe. We do not have MS specialists in Slovakia. Apart from neurologists there are no other healthcare professionals for MS. If you asked me what an ‘MS specialist’ was, I wouldn’t be able to answer! There is nobody to tell you anything about living with MS. I think I was overdosed by various pain killers for my various body parts – in my bones, my muscles, my headaches, heartaches, stomach aches, I got pills for getting calm, for better sleeping... I “forgot” to eat and drink, I was not able to read or to understand TV or radio. I realised I couldn’t understand English – which was my lifelong hobby. I was unhappy. I had passed three Universities and felt that everything was useless! I went four days without eating at all - my body refused everything. During those four days, I really thought I was dying. I was satisfied and I felt no fear or any responsibility for anything. It was here, it was close, and I realised it was quite easy to die. In a few “brighter” moments I started thinking about my children - what would happen to them? My son was 16 and my daughter was 11. The first three nights I prayed to wake up alive the next morning, and also to live for my children. I didn’t want to make them unhappy, as I knew I would if I died. I asked the Lord to let me live until my son was 18, so that he could be responsible for my daughter. I couldn’t stand the thought that they might live with their father or in an orphanage. My eyes glanced over to the glass fruit bowl brought from my mother’s garden. It was filled with blackberries, raspberries and strawberries. I ate the whole bowl and I felt that it provided me with strength to keep me going for a while. After three weeks I got a wheelchair. I was happy. My children could take me out so I could “see” the summer. My appetite came back and I became hungry for vegetables. I felt like a goat, stopping every once in a while to eat pills. My children massaged my body with warm vegetable oil and exercised my legs for me. My children... As I was a speech therapist, I knew I also had to massage my face muscles, neck and chest for better speech. My hands were still too heavy and weak to do that, so my children helped me again. I exercised my chest muscles too – by singing (Oh! How happy I was when I could sing one short song all at once). All of these activities were very hard for me and made me very fatigued. But I had to... I tried to get up from the wheelchair a “million” times. I fell down a “million” times but I told myself, “the million and first time I will not fall down!” After spending a year in a wheelchair and using walking sticks for a few steps I was taken to the meeting of the Slovak MS Union (SMSU). I got their papers for establishing the local MS branch in our town and I became the chairwoman. I was able to go rehabilitation – a reconditioning stay with the SMSU. I offered to help with their English if needed, and after three months I became a translator and later a manager of international affairs. I have changed my style of life in 360 degrees. I take a lot of clear vitamins (not chemical), I eat a lot of vegetables and I do physical exercises when I have pain. The exercises are the first thing I do to help, they help the blood circulate better which brings oxygen to all the cells. For me, it really helps manage the pain. My new doctor - a wonderful person – gave me magnesium when I told him about the pain in all my bones...and it helped! The orthopaedist gave me vitamin D injection for the same reason and it helped. I press my nerve centres and it helps. Everything helps! But the hippotherapy is excellent. After four weeks in the spa and reconditioning stay with hippotherapy two years ago, I felt my legs re-connected with the earth. I really felt “the life getting into my muscles”. My muscles felt like they were waking up during the nights after hippotherapy. Exercises in rehabilitation pool are extremely helpful and swimming as well, especially in the sea. Everything helps! One just cannot give up. Ten years ago, my friend read my tarot cards for me. I had been using two walking sticks and I had been getting worse and worse. She told me that in my 50’s I would travel a lot. I thought she was crazy. Firstly, I always had a lack of money, sometimes hardly enough to live from, and secondly, I could hardly take a few steps. Now, as a manager for international affairs of SMSU, I have attended conferences in six different countries in the past two years. I work a lot, writing various reports, translating materials, international correspondence, responding to, and writing emails. What allows me to work so hard? Exercise to keep fit, to be able to manage each journey and attend each conference and so on. I have done all the paperwork – translation of the Statute and the Report on 5 years SMSU Development for our application into EMSP and MSIF (we joined EMSP in May 2002 and became a Full Member of MSIF in May 2004). I teach English at home, and my kitchen and bathroom are adapted to meet my needs. Now I can save my energy and I can have the rest I need (not always!). I am happy. I am happy because I can walk using crutches. I still have relapses, but they don’t last two weeks like before, just three days or less. I know why I get them and I have learned to listen to my body. I am happy my children are healthy. When my son was 18, I told God: “ Don’t be crazy Goddie, now why should I die only because he is 18?! Now, when I am getting better and better? I want to take care of my future grandchildren!” My son Peter is now 22 and daughter Veronika is 17. I am happy I can live. And I am happy for what I do for my family, for our SMSU, for our MS Club in Presov. And I am happy Slovakia became a member of European Union. And I am happy I can do embroidery, I couldn’t even hold the needle five years ago! I still have depression from time to time, (now – very rarely) but it is normal in MS and I have good friends – which is the best medicine against depression. Generally, I’m happy.  |
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