Ruth 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!” Continue reading
As an MSer, you always hope. Perhaps you dream big, and you wish for a cure. Or you pray for a new form of medication to tackle your most annoying symptoms. In my case, I literally ache for better trigeminal neuralgia treatment before having to resort to surgery to numb or destroy the trigeminal nerve in my face. I also hope that one day, my severe fatigue will be something of the past by having medication that will keep me alert, awake and active without having nasty side effects.
Hoping for a cure? Of course. I am realistic though, as it might not happen in my lifetime. Simply being part of the solution, is all I wish for right now. Whichever comes first, the 8,000 people with MS in Ireland, 100,000 in the UK, 400,000 in the US and many other people around the world are looking forward, and simply… hope. Continue reading
While doing a big administration clean up, I came across some old notebooks. The one that caught my eye started on June 5th 2005, and lists MS, professional, friendship and relationship woes as I was diagnosed just two months prior.
It’s very much an interior monologue trying to make sense out of nonsense. For example, I wrote about the last meeting with my dog Wolf right before he was put down.
Questions about certain relationships also feature heavily as a new me was now meeting new demands, wishes etc.
In the next few weeks, I will be publishing parts of my diagnosis diary, so keep an eye on my blog.
Dogs, miracles with paws
See you then!
© 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.
One of the many things people newly diagnosed with MS (PwMS) look for is information on what their illness will have in store for them.
From thinking back to when I was discovering what MS might be like, I remember an overwhelming feeling of “where on earth do I even begin?” when I finally went online. I was numb and in denial but knew I had to find out more if I wanted to create a realistic idea of it.
Approximately 5,000 people are newly diagnosed with MS each year in the UK, and for this reason, the MS Trust commissioned the “Making Sense of MS” resource to highlight the need for more information at the time of diagnosis. Continue reading
Since writing my article about depression five days ago, and my mum’s 7-day visit to Ireland, I feel a shift has taken place in my mind.
I am not 100% there yet, but I am well on my way to finding uncompromising resolve again. Many grand and tiny gestures have contributed over the last 4-5 weeks, and are still willing me forward today. Of course, the backing of friends and family, as well as my medical team definitely helped.
Most of all, though, I had once again come to the realisation that I unfortunately need more sleep than the average, healthy person. At this stage so, I must start considering my continuous fights against tiredness and “forgetfulness” about needing a lot of sleep, as a pure character flaw. Continue reading
Once again, a lot of research news was published online, with the best headline saying “54 New MS Research Projects to Receive Millions of Dollars in Funding.” In my view, I can only jump up and down like a child at Christmas reading about new research and positive trial results. Even if or when we’re struggling with our illness, we know that lots is happening to help us forward in life.
So please, enjoy the list with research & clinical trial news, updates on current medication and business & general news. Continue reading
Three weeks ago, Mental Health Awareness Week graced Ireland, hoping to shine a light on the different kinds of mental illness some people live with. If you spent time on Facebook or other social media during that time, you probably saw pictures float by saying, “Depression isn’t a sign of weakness, it’s a sign you’ve been trying to remain strong for too long.”
While everyone goes through a short time of feeling low at some stage in his or her life, feeling down can also be a symptom of an illness other than depression, like multiple sclerosis. Continue reading
A milestone like no other. A curious, strange one indeed.
Ten years of living with MS.
In fact, ten years and one week.
Reality suddenly became a very different kind of living. As strange as it sounds, it became a more fulfilled life, a happier one also. Continue reading
It has been a big and very busy September for researchers, clinical trials and pharmaceutical companies. Early this month, the Joint ACTRIMS/ECTRIMS Meeting took place in Boston. For more, please check the extensive website of the conference. Continue reading
Building further upon my previous post, “What we don’t know,” let’s open the “Surprise!” book of MS. Before you read any further though, I do want to say that I do not have below symptoms all at once, or on the same day. Some are more present than others, or less or more intense. Some happen once a week, others perhaps more.
You probably know by now that my main symptoms are still ridiculously strong fatigue and similar facial pain, so what you will find below is more or less just a slight blip on the radar in the scheme of things. Unless I fall off the staircase of course, which would be rather erm… well… just silly, n’est-ce pas? Continue reading