Silver imageRuth Humleker, a profoundly political, strongly opinionated and utterly fearless woman once said, “I can change only myself, but sometimes that is enough.” With her words often on replay in my head, I think back to that day.

Yes… t-h-a-t day in April 2005.

Diagnosed. Officially a lifetime carrier and member of a band called multiple sclerosis. Question is, what will you do with that membership? Use it? Abuse it? Throw it out?

As it turned out, soon after t-h-a-t day, I knew I would be using this broken vehicle as a tool of some sorts, perhaps to help others. And yes, yes… you can stop whispering “anyone but yourself!”

The end of November marks the beginning of new chapter in my life, a new life that started exactly five years ago. I retired from work, not because I wanted to, but because my neurologist, GP and occupational doctor said it was time to.

Gulp.

When three different doctors on your medical team start singing from the same hymn sheet, you rather tend to follow, don’t you. I suppose they were right. After all, they had nice, shiny frames with medical achievements hanging on their office walls.

Looking back at my physical self between the end of November 2009 and today, my MS took a fairly big step backwards twice. With hindsight being 20/20, retiring was the right thing to do. I cannot even think where I’d be medically had I not retired, so if I wanted anything to work out in my life, then please let it be my early retirement.

Of course, I want to remain active somehow and I try to do so within the limits of my abilities. Too many times, I have tried doing more, and too many times, I ended up worse for wear afterwards. So, I don’t complain. There are worse things in life.

In the five past years, I’ve gathered more wisdom than I did in seven years of employment in a foreign country. Saying it was an amazing period full of entertainment would be a lie, but being an eternal optimist, I try to squeeze every bit of sunshine out of every situation.

In the last five years, I genuinely grew as a person: I found myself, and in doing so, found my place in the grander scheme of things. What’s even more important, I am happy and at ease with my new life.

This may sound overly philosophical to some, but it was a mental manifestation I might not have experienced was it not for being diagnosed with MS and having to retire early in life.

It may also surprise people, but in the past five years, I only had one or two prolonged periods of feeling down. Prolonged in this context means “about four or five weeks, and it might be less than that.”

The reason was trigeminal neuralgia (TN) and learning how to tiptoe around it for a long period of time. Granted, you can just as well try tiptoeing around a ballet stage in tall Dr Martens boots, but you get the idea. What do you take, what do you use, how, when, who, where are all questions that mainly remain unanswered when you connect them to TN. It’s like going in with a sledgehammer when looking for a tiny vain in your arm… It’s not always pretty as punch.

But… a real life-size-kind-of-BUT… As unscrupulous as TN has been, as wonderful is a group of people I met through the Irish MS Society. We’ve become a tight band of people as we all share MS, love for writing, as well as many funny, whacky or just plain awful MS stories. The gang does a great job in making me forget about my aching body, so what’s not to love. It’s like, “Are you 100% sure you are not my twin-sister?!?” when we talk. That close, that good, that… brilliant.

Five years of forced retirement went by so fast. I learned lots; I learned to let go, I learned to trust life again and I learned that whatever about people’s perceptions on my life, that, if I can’t change people’s ideas about what my life should be, then perhaps changing my view on myself was all I needed.

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To finish this blog post, do get back to me with the best thing to come out of your diagnosis. The good, the bad, the ugly, the funny… go for it!

© WVE and Ireland, Multiple Sclerosis & Me, 2011-2014. 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 Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

8 thoughts on “Lifetime membership

  1. I retired June 1010 after 36 years in the workplace. It was a quality of life issue for me and I haven’t regretted that decision once. Work drained the little energy I had.

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    1. Absolutely, when your quality of life diminishes as such that there’s none left, it’s time to cut the umbilical cord, as it were. I used to come home and stand in front of the staircase, not having any energy left to climb it. For me it was quality of life that had to be regained as I had none left. When my medical team then said that I had to retire, it was truly a blessing in disguise :D)

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  2. The best thing to come about besides realizing the uncertainty of life and living with complete abandon to most things temporal – like “Why not move to the beach? Better do it now; we are not promised tomorrows. or “Love my family and spend more time with them at the cost of personal success and aggrandizement since I may be in a nursing home in a few years and who knows who’ll come visit there!! :) ” The best thing to come about is definitely that the Lord showed me what causes lesions and I started a blog to help others understand that we are eating a toxin that causes myelin damage and using products that have this toxin. So, for your Trigeminal Neuralgia the cause is not a mystery – were you using some kind of eye drop or solution or eye cream? (These as the cause are not brain surgery right?) Here’s the chemistry of one product that could easily cause TN – there is a contact enzyme solution using porcine pancreas enzymes which are called PLA2. PLA2 mixes with lecithin in your eyes and forms unnaturally high amounts of lysoPC. LysoPC is a toxin that shreds myelin. The ophthalmic nerve is affected and voila – your intense pain and TN manifest. (So to recap – PLA2 + lecithin = LysoPC.) Do you want to know how I know lysoPC causes lesions? I read in the Journal of Neuroscience that lysolecithin (lysoPC for short) is injected into mice spines to form lesions in multiple sclerosis studies. So, why is lysoPC in our products and foods? IDK but I’m avoiding it like the plague that it is. I have food and product lists to avoid at my blog http://jesusdiedandlives.wordpress.com

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    1. I rather put my faith in science for showing me how or what causes MS as he wasn’t really around when I was diagnosed and when my brother, stepdad, nana and 2 other people died in my family in the space of 3 years. You can understand so that I don’t have a very high opinion of the one that should look after his ilk.

      As far as toxins go, there’s no definitive proof yet of any one thing that causes MS. In TN, a vein puts pressure on the trigeminal nerve below the brain or because of a brain lesion because of MS. As MS itself goes, the myelin sheath gets damaged as a result of autoimmune disorders. Scientists are finding more and more that MS is a immune-mediated illness leading to a neurological illness.

      I never used eye drops or eye creams before getting TN, so I have been living with it for ten years before using them. It’s very safe to say so that my TN has nothing to do so with enzymes.

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      1. I am so sorry to hear about your losses. Your response helps me a lot to see your situation better. That means that there’s a different cause for your TN, like you explained so well. I hope you identify the cause and can be released from the pain. If you ever have any ideas, please let me know.

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  3. The worst part has been the sense of self diminished. The loss of confidence in my abilities today and even more so in my tomorrows’ abilities.

    The best has been my increased empathy for my children who go through so much more than I do. A distant second would be the recognition for my insights and being allowed to participate in two great organizations (Patientslikeme.com and the American Board of Internal Medicine). It is more than a little ironic to have the recognition at a time when I feel lessened, but it does provide a salve for the sense of loss.

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