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You and Yours聽- Transcript 91热爆 Radio 4 |
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TX: 10.04.06 - Multiple sclerosis week: Nathalie Fricker's Diary聽- Me And My MS聽 |
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Downloaded from www.bbc.co.uk/radio4 NATHALIE FRICKER - ME AND MY MS My MS really hit me out of the blue: One day I thought I was a 100% healthy and the next I was diagnosed with MS. It was November 2003 and I was over in the US on holiday visiting my brother, who is a research cardiologist. I was losing all sensation from my bum down and so he took me in to his hospital's ER and they hospitalised me then and there. I had my first lumbar puncture in the ER room! I was in hospital for about a week and everyone kept running around me doing all these tests. I had absolutely no idea what they were doing, why, or the severity of things. By the end of the week, I had 3 doctors in my room telling me that I had MS. The reason they could diagnose me so quickly was that 12 years prior to this attack, I'd lost the sight in one eye. At the time, a doctor said it was nothing, I took some pills, it went away and I forgot all about it. Now it all fits into place. THE DIAGNOSIS On the one hand I was very lucky and was saved years of painstaking questions and doubts of what was wrong with me. I have met many other MS patients that have drawn out and terrible stories before they knew what was wrong with them. For them it is often a relief to finally get the diagnosis because it ends their searching. I, on the other hand, had to deal with the shock of the diagnosis. Ironically the diagnosis itself was very stressful and it took a while to digest and absorb the reality of it all. I was a bit of a mess really. The first months were not pleasant at all, especially as I was recovering from the attack. I ended up confined to bed which was very hard as I am so used to being active running around doing 5 things at once. I found that I could n't even read. I just lay there blankly - surrounded by all these books on MS. HOW DID I COPE I did try to read all the books on MS- but I often found myself struggling to finish them. I do think that it is very important for the patient to be as informed as possible and to help our doctor's understand our symptoms. But at the same time I think it is equally as important to sometimes just walk away from the MS and spend a day forgetting that you are not well. Getting the right balance between the two is what I believe is the root to a 'healthy MS life'. My attitude is that I can still aspire to fulfil my all dreams but I have also learnt to adapt, listen to and respect my body. I am not letting MS beat me. I am a stronger person because of the MS - it has made me appreciate life so much more. MY SYMPTOMS I have had 2 attacks since my diagnosis and several persistent symptoms - including buzzing. It feels as if you're continually standing on a moving train, vibrating. I had trouble bending my neck for the first year after my attack but this has fortunately settled down. I cannot carry much for a long distance otherwise my legs will buzz. But I have to say sometime I have to carry things and so I have become quite used to 'overriding' the buzzing sensation and just get on with it. Now that I am aware of why I buzz, the element of fear is gone and so it is no longer as painful but just annoying. I just breathe calmly through it. MY LIFESTYLE BEFORE MS HECTIC HECTIC HECTIC: Although I enjoyed being me, I was manic, neurotic, always rushing around like a headless chicken, doing 5 things at once but making sure they were all done perfectly! I worked very hard, took everything very seriously and was single with an 'I mustn't miss that party' approach. I was also very much into running and trekking - which was my therapy and release on life. I ran 2 marathons -for Cancer Research as my best friend had died of Ovarian Cancer. I thought I was very fit and healthy indeed! MY LIFESTYLE AFTER MS Well obviously my pre-MS lifestyle and MS were just not compatible. I had to slow down and calm down if I was going to stay healthy. I am very lucky that I had just met my future husband a month before I was diagnosed and that he had the strength of character to stick around and be there for me. I really believe that he has been a calming influence on me. I have also re-prioritised things in my life. My work is still important but no longer a life or death situation. If I am very tired I will stay at home and get an early night. My friends have learnt to understand that sometimes I have bad days and need to rest. It did take me over a year before I came out and told people that I had MS. I think that I needed to get my head around it first before I could deal with other people's reactions. But now that I am open about it I do feel that it is easier and much less of a burden to carry around in my mind. I still feel as though I am full of life and energy. I just channel it more carefully. The most important thing is to be able to laugh at myself and not take everything too seriously. I see no point in spending my time questioning 'why me?' or 'It's not fair'. Instead I just want get on with life and do things to the best of my ability. I think this was the reason that I decided to run the London Marathon in 2005. This time I had MS and was running to raise money and awareness for MS. I raised nearly 拢2000 for the MS Trust. I didn't run as fast as I had before but I still finished in 4 hours 26mins which is respectable. And more than anything I proved to myself that I could do it. (In fact, I went to a wedding that same afternoon which is a little of the 'old me' coming out!) GOING ON COPAXONE It was about the same time that I started taking the daily injections of Copaxone. It did take me a good 4 or 5 months of decision making to agree to go on the treatment. I also had to pick which type of treatment I wanted. There is a brilliant web site -www.mssolutions.co.uk - that my consultant help set up that assists making the choice about the beta interferons. I highly recommend it to anyone who is thinking about the treatment. My attitude is that anything that could potentially help or curb the disease must be good - even if it is an injection. I have to be honest here and admit that I am the biggest chicken when it comes to needles - I have had a phobia since I was a child. But it is one more challenge that I have been given and with the brilliant help of the MS nurses, I learnt to jab myself! (Copaxone is the shortest of the needles which is one reason why I picked it!) FIGHTING FOR CRITICAL ILLNESS PAYMENT. The most negative experience I have had with MS is fighting my critical illness claim. It was the first time that I really felt cheated by my illness. Anyone that has a disease will tell you the same thing: that there is no way that you would wish this on others or pretend that you have it. I know that I am not alone here and that most MS patients struggle to get what is rightly theirs. PREGNANCY, AND COMING OFF THE COPAXONE This was a much easier decision than taking the Copaxone. But I have promised myself as well as the doctors that I will continue with the treatment as soon as I can after I have my baby. I knew I had to stop the treatment if I wanted a child. I have always wanted a child and it was very clear to me that this would be something that I could not give up. We have not been married very long and in an ideal world I would have liked to have been more 'settled'. However life is not ideal and I did not want to increase the risks by being any older. But here I am 39 year old, with MS and having a baby. And I feel great!. The first 3 months were very hard and I was exhausted and just wanted to curl up into a little ball and sleep. But now that I am in the second trimester I feel better than ever and have had NO MS symptoms at all. I believe there is some research that pregnancy is the best state to be in with MS and they are looking into hormone treatments that mimic pregnancy to help people. MY ASPIRATIONS To stay happy and as healthy as possible not just for me but for my family! Back to the You and Yours homepage The 91热爆 is not responsible for external websites |
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