World MS Day 2012

Tomorrow is World MS Day, highlighting the need for more research, better medication and spreading awareness of what MS is and what it does to people who have it.

I often think that MS is a “lonely” illness. Because a lot of symptoms are misunderstood and/or not taken seriously by people who don’t have multiple sclerosis, MSers have to educate people in their environment about it. That doesn’t always go easily, and it often takes months if not years before some people finally realize that MS is a serious condition…

“Lonely” because very often people around you simply do not know what it feels like to have maddening eye pains, or extreme fatigue. This is not because those people are not ranked high on the IQ ladder, but because some symptoms are difficult to explain and rarely felt by people around you.

“Lonely” because sometimes, you wished you could switch bodies with someone more able-bodied for a day. Even when you are not in a wheelchair, some days you wished you could run up hills and not be part of the MS-world.

“Lonely” because not everyone in your environment will understand that you are still the same person; you might show a couple of cracks, nuts and bolts more than before but inside, you are still you.

And “lonely” because, when the day ends and you get ready to rest your weakened body, you just wished there was a guardian angel by your side to whisper that no matter what, everything will be OK.

So unless MS remains a relatively unknown illness, MSers will find it hard to find real peace within themselves, within the medical world and with everyone around them. Not because MS is so demanding on your body, but because we want people to understand and to be aware of what we go through every day. Until then, we hope. We pray. We find shelter in other MSers, friends and family. And we crave a cure. Every second of every day.

For all my MS-friends and family wherever they are, I carry you with me in my heart. Because of you, I am stronger.

For more info on World MS day, go to www.worldmsday.org© WVE and Ireland, MS and Me, 2011-2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

 

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6 Comments

  1. liz20d says:

    Thank you for your terrific post, such an accurate and articulate portrayal of living with MS. I echo all of your sentiments and observations entirely, living with MS as I do for a decade. Belated Happy World MS Day, your post has been shared with my contacts, in the hope of highlighting our parallel universe realities. Many congrats on your encapsulating that reality so eloquently.

    Like

    • Willeke says:

      Thank you so much for your kind words! I try to put in words what a lot of MSers feel and by doing so, maybe helping others also. It’s important to me to reach out to people with MS because it is such a difficult illness to live with, and if I can help one person feel that they are not alone in this, then I am the happiest person alive.

      Happy belated World MS Day to you too, and please feel free to email me whenever OK.

      Take care!

      Like

  2. Also, read http://pursuenatural.wordpress.com/?s=nobel+
    It discusses the work of immunology researchers.

    This article the researchers show that MS cohort ate less fat and red meat.
    http://aje.oxfordjournals.org/content/152/11/1056.full

    Do keep in mind that larger studies may be necessary. What environment did this cohort live in? What chemicals were they exposed to? The previous generation related to them may have eaten the same food (maybe) and not had MS. Whay now? Why this surge in MS?

    If you begin to email these reseachers and scientists, you will begin to encourage them and help them help you.

    Like

  3. Also, MS is often observed in families with other auto- immune diseases such as severe peanut allergy, or Autism. The genetic link has not been discovered but their is both scientific evidence being collected showing this link and as families grow and show more connections answers will hopefully begin to appear. WE HAVE to PERSEVERE to find the answer. Why MS in this generation in such large numbers? Let’s find a cure for now, and prevent future MS cases too.

    Like

    • Willeke says:

      Thanks for your comment! I really appreciate it!

      The funny thing is that I am a) the first one in my family with MS and b) that no one else seems to have any auto-immune illnesses we know of. What I wonder about is, if it is a genetic illness, why me and not other people in my family? Where did it go wrong with me when I grew up in the same country as they did, eating the same foods etc? :)

      I don’t over-analyze those questions though, but somewhere, somehow is the answer and we just can’t find out where and how just yet. Hence the daily and constant push for more research by people as yourself.

      Exactly, why this generation? I’d like to think that as new developments in science and medicine occur, further new development will occur which in turn will spurn on other new developments in researching science and medicine. Kind of like a snowball getting bigger and bigger as it rolls further downhill. I think our generation now benefits of past discoveries of the last 100 years. Since cases of MS have been found to go back to the 1860s, there’s a road well traveled already and now we find out more and more about MS, its triggers etc.

      But we need more indeed, we need to find a cure. There are far too many people suffering (even though I’d never use the word “suffering” for my MS), people who are really, really suffering. I see it when I go for my MS check-up, people with carers, people in electronic wheelchairs. I always think of them first but I wonder about the power of pharmaceutical companies. Do they really want to find a cure or do they just want to keep earning money from medication that keep us stable, but not cured?

      Like

      • You are a brave person with MS. It is society’s fault that you have MS. The genes you inherited from your family would probably have been fine in an environment over a hundred years ago. Today, it responds with MS.

        Does your family have asthma, rheumatoid arthritis, chron’s disease, irritable bowel syndrome, seasonal allergy, peanut allergy, diabetes? Any autoimmune disease is connected to the two immune systems in human bodies: innate and adaptive and the innate controls the adaptive.

        You will have to try moving away from your current location of residence and see if that helps. Can you?
        You will try having a more meat or red meat diet to help ease the symtoms – a massachussetts study. Can you try it and see if it helps?
        But do read up on these first. No large scale scientific study has been done to link environment, family members with auto-immune, diet, vaccines, cleaning products, exposure to household common lawn herbicides, residence in what was prior agricultural land using chemicals, and landfills near residence, and old steel mills near residence, gas pipelines near residence and more. Can you organize the fellow MS patients to raise funding for such large scale studies? Many parents with MS who have children with Autism are worried that such studies are not being conducted. Who will take the lead to demand and raise funding for such studies? Would you be able to? You might be motivated.

        We know a physician with MS with a child with a severe peanut allergy.
        We know a grandparent with MS, with an offspring with MS, whose grown son, a famous person now with severe MS – genetic link, probably; environmental exposure – has not been resarched. All three lived for several decades in same locality. The next generation is growing up elsewhere. We shall have to wait and see if this move of residence breaks the chain of MS in the family.

        We care about your MS. The scientists are people who love what they do. Email them, write to them, encourage them. Ask them what help they need – usually funding related – to do MS related large scale work answering your questions and discovering therapy and preventing future cases. Then, set up a system to recognize and reward and shower these lonely scientists with the attention normally reserved for movie stars and sports stars and singers. Then, watch and see how effective it can be.

        Like

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