Life after summer

Autumn

As the days grow shorter and temperatures colder, it is time to welcome autumn, and what should be a small new lease of life. There is nothing more comforting and relaxing than seeing daylight fade early in the evening. Darkness captures me, telling me it’s time to cuddle up on the couch, book in hand, […]

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What MS and shoeboxes have in common!

Love-holiday-Wedding-Sweet-for-Box-Boxes-Party-decorations-Gifts-supplies-wedding-Candy-100pcs-Package-and-or

It just makes for unimaginable breakouts of sarcasm filled with Irish-sounding words of wisdom. In more politically correct grammar, I often feel like replacing myself with newly created brain cells to replace those that somewhere down the line, must have gone missing after being targeted by biological and chemical warfare.

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Noise, fear and MS

Ears hands people

What those lessons are? Don’t be fooled by fear of the unknown since something is only unknown when you experience it for the first time. As such, fear is a choice.

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Happiness and MS

woman doing hand heart sign

In short, I felt like gutting my immune system from my entrails. My mind from my brain. And my eyes’ life experiences dunked in a glass jar filled with ethanol.

Life with MS. Nobody said it would be easy. Or, straightforward.

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A to Z of MS

blur book stack books bookshelves

You hear them each time you speak with your medical team: MS-related medical jargon can sound heavy and darken your thoughts. This list will be updated with easy to grasp terms, and if not, do not hesitate to send me a message.

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MS, fake or not

pexels-photo-1058388

The assumption that of the many invisible symptoms associated with MS, some can be faked – as if they’re digitally pasted on someone – is flabbergastingly prejudiced and foolish. It portrays a clear lack of understanding of what MS as a neurodegenerative illness is and what its impact is one those living with it.

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Oh, media, when will you ever learn?

Vintage typewriter

Dear Media, You should know better. It began with this article in 2017 (*) Meet the Cambridge scientist on verge of curing Multiple Sclerosis: This amazing work could literally change the world Cambridgeshire Live, June 4th, 2017 Two years later… Meet Su Metcalfe, the Cambridge scientist on the verge of curing multiple sclerosis Healthy Living Idea, […]

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About Vikings, Vitamin D and multiple sclerosis!

Girl in the sun

So, how do you feel about your MS? The biggest joke of your life? A royal pain in a less magnificent backside? Or, just something to be had, whether you like it or not, and that includes the big bag of medicines and vitamins you pick up from your pharmacy every four weeks?

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Stop calling it a cure!

Finger on lips

You know it will  definitely gather income. Good for you. Rehashing unresearched claims that have yet to be clinically trialled is not OK. It is even less OK when it’s done on the backs of people who day in day out, live in hope because they want to get on with life instead of having to go on living with critical illnesses. It is a hideous way of earning some bucks.

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Heat sensitivity and MS?

Blurred eye

2018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland ◾ MyTherapy: Multiple Sclerosis Blogs: 10 of the Best in 2019 ◾ Ireland Blog Awards: Finalist 2014, 2015, 2017 ◾ MyTherapy: Best MS Blog for Simplicity 2018 ◾ Everyday Health: Top 10 MS Blog of 2018 ◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019 […]

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The duality of MS

Woman beach

In ever memory of physical betrayal and every second of dislike of my illness, I am still intrigued by its complexities and continue to care for all its nuts and bolts.

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Body image and MS: how many selfies do you have?

Woman hiding face

in reality, people have far more important things to think about than how you, me and the rest of the world looks, and I even if you were on their radar, they’ll have forgotten about you within the next ten minutes.

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Sensory MS symptoms: The hair that isn’t there

pink-hair-selfie-bun

By now, you’ve probably grown accustomed to some of my outer worldly MS symptoms like the ice-picking in my eye, the bees in my ears or the whole-body buzzing when lying down. Some girls just want to have fun. I just want to stop being so blatantly weird.

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No-wrinkle multiple sclerosis

Wrinkles blue eyes

Neurological tests are entertaining. They’re telling. Mind-boggling. Enigmatic. In brief, neuro checkups sometimes border on the gloomy, darkly lit twilight zone of your existence, especially when you get up close and personal with the MRI scans of your central nervous system – your brain and spinal cord. Both are the cause of what makes you the […]

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MS and PTSD: not all in your head

model-of-human-brain

Life with MS is an is an ever-changing intimate tale of loss and redemption and of love and forgiveness within your relationship with yourself. Not one day should be the same, and not one minute can go lost to idle words or feelings.

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MS + single on Valentine’s Day?

adult beautiful beauty close up

You can channel your inner delightfully, dazzling diva while wearing pyjamas, dog-shaped winter socks, leg warmers and your turban hair towel.

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Things that make you love and hate MS resolutions

strong-women

“I must work towards a new set of ears,” I thought, blissfully unaware that getting these would be a herculean feat of biomechanical engineering. No matter how much I wished to exchange one of my senses because of bouts of noise intolerance, I had to retort to the usual, “Ah, the joys of life with MS” when laughing about another one of my MS-induced naps the following day.

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My Christmas heroes

Those who willingly and therefore as blindly as I was, kept walking beside me are the heroes in this fourteen year long tale of chronic illness, daily wretched pain and forgiveness, of daily adaptation and understanding.

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Time heals, perhaps even MS

Dangling clock

As you move on in life, you will find that perhaps your diagnosis was something that needed to happen to see what is really important in life.
It is not an expensive new car, clothes, jewelry.
It’s health and acceptance, though flawed the best of times.

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Noise sensitivity in MS: Turn off your voice!

Vintage

If sound intolerance were a 2005 Marks & Spencer food porn ad, people would refer to it like this: “This is not just sensitivity, this is a hyperacusis noise sensitivity.”

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In search of my MS Zen

Despite having my inner dialogue running into philosophical mayhem, parameters on what I perceived to be acceptable have been reset, and my inner dialogue needs a fix as an intuitively sharp anguish took over my mindset last week.

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Giving up?!

Red umbrella

But, MS is the keeper of secrets. Not just for a day, but forever. So, rewrite your narrative, embrace its playful game of cards waiting for you to chase triumphs during times of adversity.

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Sleep and MS… It’s what’s (not) happening!

Imagine standing all dolled up at the front door, excited to go to the film you’ve been dying to see. That doesn’t do it for you? Replace ‘the film’ by ‘finally buying the boots you’ve been waiting for’ or by ‘rushing out to buy a new power tool’ to finally set up new furniture.

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How are new MS medicines approved?

If you have MS or any other chronic or acute illness, you might be dependent on pharmaceutical intervention at some stage. But, how exactly do your medicines arrive in your hands once they passed the clinical trials stage? The EMA (European Medicines Agency) own scientific committees will scientifically assess the clinical trial data. Once this […]

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Pull up your big girl panties!

On the beach

Let me count… Roughly speaking, I was diagnosed with MS about 5000 days ago. That’s one fair bit of experience under my hood, right? But… When talking to people, new or otherwise, it can be difficult telling them you’re living with an incurable neurodegenerative illness. Sometimes it feels like being in an uninterrupted car crash, minus the […]

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You retired at age what?

Old clock

So, yes, I retired at age 36,5 and it will never be what I envisioned when I moved to Ireland. I ‘ve crashed and burned, stumbled and found hope in tiny triumphs and friendships larger than life that will stand the test of time.

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Bliss, the MS-way

Apple autumn

I long for autumn since the first few warm days. I long to walk in Phoenix Park, kicking up fallen leaves that have been building up under large oak trees. The changing of colours in nature is invigorating, it serves as a token that life goes on, that seasons come and go, each year bringing new fragrances and new stories waiting to unfold.

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The beauty and cruelty of words

woman writing on a notebook beside teacup and tablet computer

What we hold dear about putting pen to paper is the urge to create something out of nothing, quite often to slow down a fast-paced society where the purity of words have become chaotic and yearn to become meaningful and treasured again.

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Starting over

Clock vintage

Sacrificing your life for a chronic illness never comes easily. You learn to compensate and decide how reliable your judgment is based on what you can put in physically, mentally and emotionally. Quite often, what lies within you is mentally infinitely stronger than anyone might realise – even yourself –  because, until that point in time, you have been at your worst already.

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MS Treatments (2018)

Doctor hospital header

List of Disease-Modifying Treatments available in 2018. If information is missing or incorrect, please send me a private message.

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