About

Hi there! A little about myself now…I was born in December 1984 and was diagnosed with MS in 2005. Here is a bit about the story of my journey through & with MS.

Following Lhermitte’s sign, AKA the Barber Chair phenomenon (the electric shock-like sensations that extend down the spine and all the way to the limbs after flexing the neck) and subsequently optic neuritis on my right eye, it was in early December 2004 that I started various tests. The diagnosis came about a month and a half later – it was Multiple Sclerosis. Up to that day, I didn’t know what MS actually was. The big eye-opener came when I was told that I have to control the disease once weekly by administering interferon beta 1a intramuscularly! Not only was I told that there is actually NO cure for MS but also that I had to use needles in order to control it! I have always hated needles and so the idea of having to inject myself once a week simply devastated me. For a whole month, I amazingly injected myself with no help whatsoever – no problems! I believe that it is after this period of incomplete awareness when I realized what was going on was actually a very serious thing; MS IS an incurable disease that will stay with me forever. After that month I simply could no longer inject myself; I totally blocked. A month of administering the injections with the help of my nurse passed by and I was finally given a personal injector. This was a great help for my troubles. It was so much easier to just put the injection in the injector, press the button and insert the medicine… What a relief! Since then I have been using this little device (long over a year now), but from time to time I do come to think that I might do without it (albeit I never actually tried to do so:). The acceptance period was a though one. I believe I am still not over that phase, but I am definitely moving forward on the acceptance scale. I have to struggle with tiredness, visual & balance problems as well as walking problems among others. However, with the medicine, these are not really major issues in my daily life although they are present here and then.

My goal at the moment is to finish university. I am on currently doing my Master together with a “joint” (some people say ‘double’) degree. I graduated in 2007 with a BSc in business administration and Chinese language and culture. This was one of the reasons I have been to China a couple of times. The first time was an amazing experience because I finally got to experience first-hand that famous Chinese culture which I had only studied about. The second time was even more special because I not only went to Xian (to see the famous terracotta soldiers) but also to Lhasa – Tibet! There was a gap of one year exactly between these trips and I could markedly notice the difference: the same walking distances that I did the year before, I had difficulties in doing a year later. Although this was yet another reminder of MS being still present in my life, I did not let it ruin my plans. I also went through a couple of relapses prior to traveling which almost came back during my trip to the Namtso Lake (Heavenly Lake in Tibetan), the highest lake in the world (ca. 4700m, with a vast area of 1961 km²). However, I enjoyed these experiences to the fullest and I am so grateful for having been able to accomplish them.

I have come to realize that (and I admit that it was not an easy process:) I can still do a lot of things despite the fact that I have MS; having MS does not mean the end of life. What I learnt by having MS is to appreciate life even more…I was given this life, with this challenge, and I want to make the best out of it and MS is not going to stop me in that; I will not let MS control my life. The little dreams and goals are what keeps me going throughout my life with MS. I believe we should never give up these little dreams because they are the source of happiness and joy in our dark moments. A strong mind and spirit is what we all need in our personal fight against MS. The various episodes in my life with MS have been difficult, but as difficult as they were they were also strengthening and encouraging. I have become morally stronger and even more determined.

I realized that awareness regarding MS is not as high as it should be and that cures are also not widely available throughout the world. I would like to add that I have also engaged in activities that promote awareness regarding MS. I held the MS GDP (MS Global Dinner Party) – a party promoted by MSIF with the aim of not only raising awareness but also collecting some funds for further research. It is organized every year around February/March on the same date around the world and it is a really good way of having fun with your friends and raising awareness about MS for a good cause. All information regarding the MS GDP can be found on http://www.msif.org. Furthermore, I have opened a fundraising page for MS in the hope of raising money for further research and development of cures (the link to this page is found on this blog). I also participated as a speaker at the “MS Today and Tomorrow” conference in Prague last year by sharing my story with other MSers. This was a wonderful experience, not to mention that it was the first time I’ve ever met other people with MS.

Even though I am very busy studying for my Masters I keep looking for news and interesting information regarding MS so as to keep up-dated…and I am happy to be able to share my MS story with you and hope that it shed some light over all of those possibilities that are still out there in spite of having MS and should not be neglected.

Take care you all, enjoy life!

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