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. Continue reading

Gilenya in Ireland, part 2

It’s been a tumultuous week. I had my neurological checkup in one of Dublin’s biggest hospitals. It created ripples of emotions, questions and very few answers and as expected, Copaxone will remain my disease modifying drug (DMD) for the next while. Off I went so re-adjusting my hopes.

My neurologist has studied at one of the best Irish universities as well as Harvard, so she knows a thing or two about MS. I tend to think of myself as “an expert-patient of myself” because I know how this or that symptom feels, while my neurologist knows the place of the neurons, myelin sheets and where the damage really is in my brain. In short, she’s the expert, and my love-hate relationship with Copaxone will last a bit longer than expected. Continue reading

World MS Day 2012: Letter to my newly diagnosed self

Two years ago, the organisation of World MS Day, asked us to write a letter to our newly diagnoses self, no matter how long ago we were diagnosed: “If asked to write a letter to yourself today, to be read on the day you were first diagnosed, what would you say? Would you tell yourself to slow down and take stock? Or tell yourself to dive head first into living?”

Dear me,

“You have mild MS…”

“Mild” is good, “mild” means that I can keep on working, “mild” means that I will be able to live with it.

“It is just “mild” so nothing is wrong with me…”

I remember every single minute of today, of my diagnosis. What was said; done; not acknowledged.

I was told I would have to change my lifestyle. I think these words are even worse than hearing I have mild MS. I don’t want to change my lifestyle, and besides, how do you change your lifestyle?

How, when all this started?

Denial is setting in because I don’t want this illness inside me, I want to live, to travel, to study, to work.

To work. Will I tell my employer?

Will I tell my colleagues, friends, family?

Denial somehow turning into joy because I am not imaging the symptoms I have, because the consultant in hospital thought I was “just-another-Monday-morning-I-don’t-want-to-go-to-work-today” case when I checked myself in hospital just weeks before my diagnosis. Joy because it is not a tumour. Joy because I want to live, because I need to live.

So here I am now. An illness that cannot be cured, and I am told to change my lifestyle. I am not going to because this is my life, and I want to live. And I will. I will work, and enjoy life, every single second of it. Because this life is only just beginning.

“You look after yourself girl…”

I am, and I will, no matter how far this illness will take me.

© Willeke Van Eeckhoutte 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.

World MS Day 2012: Letter to my newly diagnosed self

Two years ago, the organisation of World MS Day, asked us to write a letter to our newly diagnoses self, no matter how long ago we were diagnosed: “If asked to write a letter to yourself today, to be read on the day you were first diagnosed, what would you say? Would you tell yourself to slow down and take stock? Or tell yourself to dive head first into living?”

Dear me,

“You have mild MS…”

“Mild” is good, “mild” means that I can keep on working, “mild” means that I will be able to live with it.

“It is just “mild” so nothing is wrong with me…”

I remember every single minute of today, of my diagnosis. What was said; done; not acknowledged.

I was told I would have to change my lifestyle. I think these words are even worse than hearing I have mild MS. I don’t want to change my lifestyle, and besides, how do you change your lifestyle?

How, when all this started?

Denial is setting in because I don’t want this illness inside me, I want to live, to travel, to study, to work.

To work. Will I tell my employer?

Will I tell my colleagues, friends, family?

Denial somehow turning into joy because I am not imaging the symptoms I have because the consultant in hospital thought I was “just-another-Monday-morning-I-don’t-want-to-go-to-work-today” case when I checked myself in hospital just weeks before my diagnosis. Joy because it is not a tumour. Joy because I want to live, because I need to live.

So here I am now. An illness that cannot be cured, and I am told to change my lifestyle. I am not going to because this is my life, and I want to live. And I will. I will work, and enjoy life, every single second of it. Because this life is only just beginning.

“You look after yourself, girl…”

I am, and I will, no matter how far this illness will take me.

© Willeke Van Eeckhoutte 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.

Gilenya in Ireland… or not?

Looking through the window and wondering when and how it all began… Did it creep up on me or did it just hit me with a ton of bricks? Honestly? I think I know when it all started, but then again, there have been past flare-ups or exacerbations long before that, even if I didn’t know what they were at the time. Hindsight is a wonderful thing if you know what to look for.

It does not matter anymore how it all began. Maybe it was fate, but do I really believe in fate or do I just say I do? People often refer to the diagnosis of multiple sclerosis like an unwanted houseguest turning up on their doorstep, an unwanted guest who will be there until their last breath, through the good days and the bad, the rainy days and the sunny days.

Continue reading

Life begins at the end of your comfort zone

Sometimes I just don’t feel like talking about what goes on mentally or physically. Not being able to sleep properly doesn’t do much good either, so writing about everything that has been ruling my day, was rather hard to do.

Having MS is no mean feat… If your MS is anything like mine, then I’m quite sure that you know what I’m talking about. Or maybe not, because people with MS can differ from person to person as no two people are alike symptom-wise.

A lot of people are in the relapsing-remitting stage of MS which means that you can have a flare-up (also called relapse or exacerbation) and then you’re mostly symptom-free for a while until another flare-up happens. Seeing as MS is a chronic and degenerative illness, you might gradually get worse over time. Then again, and this is another one of MS pitfalls, you just don’t know if or when that will happen. You can either stay in relapsing-remitting (RRMS) stage or you will move on to the progressive stages. But not me… Not yet. Not ever. Continue reading

A new dawn, a new season

September 1st… There is some security in hearing those words. September 1st reminds me of my first days in school, of the start of autumn and winter, of the coming of Halloween and Christmas, of curling up on the couch under a blanket and with the candles and the open fire litThere’s something in those last few months of the year that make me long for them all summer long.

I am glad the warm or hot summer temperatures are gone again for another 6 months or so, and even though I love summer… the temperatures are my biggest enemy. My reasons for loving autumn and winter have nothing to do with being a negative person, because I am not.

Physically, my body cannot take anything more than 17° Celsius. Temperatures below that: absolutely perfect; anything above that: torture. It may sound funny, or weird to some people, but when your central nervous system is under attack by your immune system, your body will become a joke in hot temperatures and your symptoms will flare up like a torch-lit Rome. Continue reading

MS fatigue… the invisible monster

MS fatigue The most common, yet most difficult to detect a symptom in multiple sclerosis. Aside from feeling exhausted, having to explain people over and over how different it is to normal tiredness, you often get a stigma assigned of “yeah, yeah, you’re just being lazy” or “sure, now keep walking, it’s probably not that bad.” Not everyone will express their opinion out loud, but people will think about why you’re “just not making a bit more of an effort”.

MS fatigue is more or less an invisible symptom and it’s hard to explain exactly what it feels like. Some people will stop talking, walking or you will notice changes in their behaviour. Unlike normal tiredness fit people feel after exercising or working 8h a day, MS fatigue is an overwhelming feeling. It can be brought on just like that, like you’ve hit a brick wall and you can’t move forward anymore. Or it can creep up on you slowly, like you’re feeling the energy run through your body to your feet and into the ground with each step you take. Continue reading

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