Tag Archives: Positivity

[Throwback Thursday] Balancing life and a chronic illness

Oh, you can bet I am willing, I am usually more than willing. When physical restraints curb your potential, you realise that you want so more from your own life, and out of your own reality. Life is moving forward outside your medically induced world, and you feel annoyed when healthy people don’t realise the worth of their bodies, their unused potential.

It simply reminds you that being chronically ill sucks.

It’s energy being depleted in all the wrong places. There is no uptake to being ill. There is no room for maneuvering when you’re faced with an illness that will -quite literally- be there until you draw your last breath. Do take it from someone who’s already stared death in the face because of it; it is so not all it’s cracked up to be, honey.

To read the whole post, please go to: Balancing life and a chronic illness

©WVE and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

Man up!

screenshot-www-canva-com-2017-01-15-20-38-57During another stimulating chat with one of my ex-college friends, we found out that both our subject of non-admiration is Michael O’Reilly, one of Ireland’s Olympics boxing competitors who was sent home following a failed doping test during the first week of the Games. He knowingly travelled to Rio and although exempt from fighting for a title already, he kept silent for a week. Eventually, he admitted that he “unintentionally took a supplement that may have contained a prohibited substance given to him by someone unrelated to his team or association.”

Of course, by adding that he was “given the substance by someone else,” MOR is not taking full responsibility for the issue. It would be my understanding, though, that if you want to be an Olympic athlete, you don’t jeopardise your place by “unintentionally” taking things but also, that you need to be aware of everything that goes into your system. Passing on the blame in doping cases often smells like self-pity cloaked in a sense of entitlement and egotism. Continue reading

While I was sleeping…

NapThursday, February 4th, 2016

I just broke the self-proclaimed and utterly shameful record of nap-time during the day.

Six hours and thirty minutes, give or take.

During that time, the Irish election race transformed into kindergarten battleground antics and in the U.S. Donald Trump was still vying for that eternally white house somewhere iwan Washington D.C. Elections generally are a mad dash trying to get into the minds of people willing to vote. I wonder if his toupéé agrees with him.

Saturday, February 6th, 2016

Eventually, those 6h30 turned into quite some time between the sheets, and to this day, is still ongoing. Add some fierce facial and eye pain to the mix, and you forget everything and everybody.

This morning ended with half an eye on Shetland on the BBC, and ended in dreaming of Ireland in my bed in Ireland, having fallen asleep within the starting ten minutes of the program. Clocking time, two hours and some fifteen minutes.

This afternoon, as desperately as I wanted to see the start of the Six Nations Championships in rugby, I was asleep – yet again.

Continue reading

Balancing life and a chronic illness

Life-is-a-Gift-Facebook-Timeline-Cover

Imagine this… You are chronically ill, but every time you have a physical setback, your body can heal itself without input from your GP, neurologists, hospitals…

Our mind has the power to heal heartache and/or to show strength in times of need, yet our bodies lack that magnificent paradox. The answer lies in how we look at our emotions; are they your friend, or foe? And how do you view your physical body?

After some feeble attempts trying to write a few paragraphs the past few weeks, I was sent back to the drawing board after each occasion. Not good enough. Already done this. Needs more research. Too tired. Continue reading

I don’t miss myself

So…

Rugby world cup.

At last.

England in a fashion faux-pas. Coin toss aside, they resembled players of Wales, China, Japan or Kyrgyzstan (Fijian, red is Fijian).

Mum’s nine day visit to Ireland now over.

Visited Dublin Zoo once again. New camera making me rather shutter-slow, hence prevalent photographic bonding with rear ends of several animals.

Otherwise, hardly left the house.

Sniff.

Thank you, MS. Living with a chronic illness is not all it’s cracked up to be. Chronic means chronic. I don’t get to choose the days, the hours, the moments.

Hence, a triad of medical events in the space of twelve days, now extended into a three-week period.

Flu. Impatient, it could not wait landing on my doorstep before that all important flu jab. Must remember that viruses follow idiotic timetables and adapt accordingly.

Seriously. Continue reading

Ten happy MS years

Dodinsky quote with red flower

A milestone like no other. A curious, strange one indeed.

Ten years of living with MS.

Ten.

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

Under-caffeinated writer. Please help.

Coffee imageAh, ladies and lads, by now you know I can be a bit kooky at times. Hell, I can even get a little cranky when chronic pain is interlaced with a whacky sense of fatigue. I will, therefore, try to remain un-kooky today.

Please allow me, so, to ask you for a small favour, no strings attached, no problemo if you can’t!

Where others might ask for a pint… I don’t drink alcohol, so I won’t fall down on my knees begging you for a shot of brain cell killers.

I also won’t fall down on my knees asking you for a fag… as I don’t smoke. If others want to turn their fine, red lungs to utter blackness, the true colour of hell… their lungs, not mine! Continue reading

Tiredness ≠ fatigue

Sunday 9.13am. While others are slowly waking up, I can barely keep my eyes open. In fact, I am sliding deeper and deeper under my duvet, with my laptop now at an awkward angle to type. Being wide awake since 1.30am – thank you so very, very much MS – has depleted my energy tank.

“So what?” I hear people say. “It’s Sunday after all.”

Yes, I do know how to read calendars and clocks. I even know how to reset the microwave clock when Ireland changes to a new daylight saving time. Please don’t compare healthy tiredness to medical fatigue, it’s like comparing microwaves to planet Mars.

Continue reading

10 bold myths about MS


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Multiple sclerosis is an illness subject to many myths that turn out to be misconceptions believed by far too many. When you scratch the surface, you find stubborn tales that create unnecessary anxiety and sleepless nights for those just diagnosed.

So let’s just throw some of the many misconceptions out the door, shall we? Continue reading

Wonder Woman Syndrome

pace-yourself2I’ve done it again. Minus the suit, mind you.

Rhetoric aside, picking my battles wisely is not something I do easily. Not only that, changing your lifestyle and striving for quality of life is not as easy as it sounds. It’s as much a mental, emotional and physical struggle to sustain quality of life. Continue reading

Kids? Not right now, please…

Children and multiple sclerosis?

Not always a straightforward decision.

Although life was good during my last relationship, I secretly decided that having children would probably not be on my list of things to do. Not because of the lack of love, but because I didn’t want to pass on my illness to my future son or daughter. When we eventually talked about possibly mixing my illness with screaming babies and hectic lifestyle, I realised I made the right decision.

Being broody comes with being female, and despite my decision, I still get broody sometimes. If MS wouldn’t have crossed my path, I absolutely wanted children. One of the few “nice” things about being chronically ill and being childless is, however, when looking after children of friends and family, I can give their children back at night. I get to go back to my own cool, dark bedroom in my quiet house, and I have my broodiness resolved for a while. Continue reading

Game, set, relapse!

“Dwell on the beauty of life.
Watch the stars, and see
yourself running with them.”
(Marcus Aurelius, Meditations)

There’s no hiding when a MS relapse is in town. It arrived on my doorstep about 5 days ago, warts and all, and I’m still trying to hide. I could give you the nitty gritty technical bit of it, but I fear it wouldn’t read like a Booker prize novel. And that, is something I aspire to one day, just not today. Continue reading

Not my face!

162974080234952360_x4ok1y8s_fSomeone once said “Babe, you may have MS, but you’re still sexy. Never forget that.”

Shortly after my diagnosis, my then-boyfriend uttered those very words. He must have seen me look at myself in a critical manner one too many times since returning home from a two-week stint in hospital, wondering if ‘MS’ really was written on my face.

Even though I don’t usually give in to superficial words like this – after all, beauty is literally a fast-moving downward spiral – and with my own alternative fashion sense, hearing this was just what I needed to hear. His words became a quick-fix mantra to pick myself up when I needed a boost. The relationship didn’t stand the test of time, but sometimes I still say those lines to myself. Continue reading

Positive MS News: May 2014

funds-from-nih-promote-large-cost-effective-clinical-studies-33717.html

With a 14-day delay in posting some positive news about MS, I’d like to offer my apologies and no, I absolutely haven’t forgotten about you. As many people with MS know, May is about the busiest month for those who advocate and volunteer. World MS Day is the main day of the year for MSers, but before and after… sigh… there’s a lot to be said, done and needless to say… lots of sleep to be had. So without further ado, here is some news that might make your lips curl and your mind coo! Continue reading

Defined by myself, not my illness

My name is Willeke. I am a daughter, sister, aunt, niece, sister-in-law, cousin, granddaughter and simply a part of a special family.

I am, however, also an individual.

I am passionate, caring, goofy, alternative, tenacious and inquisitive.

I love writing, quiet spaces, history, psychology, helping others, the English language, photography, dogs, laughing, reading newspapers, animals, books, rugby, watching television and coffee.

I studied library sciences, and counseling with merit. I loved working hard. I loved working, period.

I write my own blog and I’m a voluntary contributor to those of the Irish MS Society and others. I am a volunteer spokesperson for the Irish MS Society, and advocate better neurological services in Ireland in general by writing and talking to decision makers in government.

As you can tell, I have lots that strengthens me and drives me forward. I also have (dis)abilities which I bend into a positive writing tool for others to lean on. My limitations serve as other people’s motivation. Their motivation became my inspiration. Continue reading

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