I am not my brain

Vintage clock with white flowers

“What’s wrong with my brain?” doesn’t automatically mean, “Is my mind, my soul therefore broken as well?”

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Why I should be a brainiac, but I’m not

OMG shock and awe

It happened again. Just when I attempted to maximise my brain, it decided to take over and run the show. It’ll be fun, it said. But, it was so not pretty. Not even by a long mile. With so much physical pain and hence collected a fair amount of neurology-related knowledge due to life with MS, […]

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The story in all of us

MS is a mere aspect, label or classification. My story is therefore not one of heroism or tragedy, satire or drama, cheap thrills or grandeur. Showing up for myself in my own life means taking responsibility for the good and the bad while also trying to achieve goals I set myself for 2018.

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Do I have stupid written on my forehead?

Can you recall what life was like before this craziness started? Nope? Neither can I. There is a bit of mental derailing going on right now. Fatigue is back with a vengeance. I am so excellent in not sleeping well, that when I do, it’s a reason to organise a party, or rather, a pyjama […]

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Magnetic voices

Life with MS is about adaptation. What you can do, however, is listen to the voice of reason, no matter how hard it might seem. It might say that you will need time, rest, medicines, a decent medical team and a seriously good dose of positivity to go through life.

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Back soon!

Writing has been a bit slow lately. New content will find its way to IMSM soon!

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MS News: April 2017

Research worker

The latest MS news about clinical trials, research, treatments, mental & emotional health, diet and lifestyle, including highlights from Barts MS Blog

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MS News: March 2017

Highlight still on American Healthcare Act, the replacement plan for the Patient Protection and Affordable Care Act (ACA) released by Congress on March 6, 2017 Society Releases Statement on American Health Care Act National MS Society Urges Lawmakers to Oppose American Health Care Act Reducing Out-of-Pocket Cost Barriers to Specialty Drug Use Under Medicare Part […]

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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.

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0% responsibility – 100% accountability

Today, I joke about not being perfect or about my mind behaving like a repetitive software update that refuses to stick after a few busy days. I may add that my bones rattle and that I have a Club Med-type relationship with three different hospitals, my primary care physician and my pharmacy. Or, I forget my name, fall asleep at fancy receptions, need an hour to cut three peppers and two onions and sometimes need to nag to myself to get things done.

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UNCRPD in Ireland – begging for change

Over the years, many extraordinary, inspiring people with disabilities have shown how they have rocked the world in their unique way. What the likes of Trump might regard as incompetence, I have seen extremely able, courageous people who have raised the bar not only for themselves but for others as well. They are living proof that having a disability is not the end of the road. There is, in fact, a whole world ahead of you. It might be good to remember these strong words from Michelle Obama, “When they go low, we go high.”

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Being real!

Despite chronic pain and fatigue issues, I am making the best of my life, and I am doing everything possible to be the best version of myself as I can be. All I ask of you is some understanding of what I am going through, and know that every bad day is only making me stronger. Some days, though, I want you to hold my hand or hug me and tell me that everything will be OK.

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Man up!

“The more you struggle to live, the less you live. Give up the notion that you must be sure of what you are doing. Instead, surrender to what is real within you, for that alone is sure… you are above everything distressing.” (Baruch Spinoza)

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MS News: July 2016

The latest news on MS research, clinical trials, treatments, mental health, diet, exercise, lifestyle as well as business news and videos.

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Positive MS News: April 2016

Highlight! New injectable multiple sclerosis drug given go-ahead  Smoking Cessation Decelerates Brain Volume Loss in Multiple Sclerosis Research Catching glandular fever can prevent multiple sclerosis Drug boosts myelin regeneration in mice raising hope of future treatments for MS Gut Bacteria Affects Myelin Content and Induces MS-Like Depression in Mice, Study Reportsultiple sclerosis development risk linked with […]

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Ignorance

Oh, people will stalk you on Facebook on their smartphone, but do not ask them to find unprejudiced, trustworthy websites to learn something about your condition on that very smartphone. Quite often, they “will do so when they have time,” despite having their phone in their hands 50 times a day.

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Let’s be frank

“Too many times we like to blame others for our own problems. Situations and people create our experiences, but these situations and people don’t create you. Understanding our past helps us to distinguish why we hold on and repeat self-destructive behaviours.
When we feel anger, resentment and other non-positive emotions, the only one we annoy is ourselves. So, choose taking ownership over blaming others, happiness over negativity, a new way of life over just remaining in a rut.”

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Balancing life and a chronic illness

Reality. It’s what’s for breakfast. After some feeble attempts trying to write a few paragraphs the past few weeks, it was back to the drawing board each time. Not good enough. Already done this. Needs more research. Too tired. Not fit enough. You know moments like these, you sit down, determination almost physically squeezing ink […]

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Time to go our separate ways

We are having a divorce of sorts. Because of the ever-growing volume of my blog, and WordPress slower as time goes on, I’ve finally decided it’s time to move blog posts about Ireland, books, writing etc to a new blog called Kick-Ass Ireland! After all, this is a blog about multiple sclerosis with facts, figures, […]

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That thing people call ‘summer’

“It’s just another one of those very paradoxical facts of life: as a person with MS, you lack vitamin D. The only way to get good vitamin D into your body is to spend time in the sun. If heat sensitivity is part of your long list of MS symptoms, though, you can’t sit outdoors in the sun because your other MS symptoms get worse. Result? You choose to stay out of the sun, and therefore continue to lack vitamin D.”

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Detailed Trigeminal Neuralgia info

Types ° Typical TN ° Atypical TN ° Pre-TN ° Multiple-sclerosis-related TN ° Secondary TN ° Post-traumatic TN (trigeminal neuropathy) ° Failed TN

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10 Medical Apps for Clinicians

MS @Point of Care MS @Point of Care presents valuable information in an easy-to-digest format. MS @Point of Care is a series of chapters and other tools that aid in making informed decisions regarding diagnosis, treatment, and symptom management. Available on iPhone MS Diagnosis and Management The Multiple Sclerosis – Clinical Care app is designed […]

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Lifetime membership

“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 begin to think where I’d be medically had I not retired, so if you want anything to work out in your life, then please let it be your early retirement.”

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Ten happy MS years

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.

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MS in numbers

“Instead of going into the possibility of ending their life in a wheelchair, I refer to the opposite side of the scale. When they say “But 25% of people with MS will end up in a wheelchair!” I say “Perhaps, but that means that 75% of people with MS will not end up in one at all!”

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Big pharma’s friendship

“I’ve never been one of those anti-pharmaceutical protestors who claim that all medication is just a load of sugar-coated candy. It’s extremely unlikely I’ll ever take sides with those who protest. My view is that sometimes you just have to get off the warpath and look after yourself, even if it means bombarding your body with chemicals in order to get healthy, or better at least.”

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Volunteering, a worthy cause

“In fact, for anyone interested in volunteering, research shows it can be beneficial in improving mood, self-esteem and quality of life, and in reducing stress, pain and depression. It also shows that ill people who volunteer, become better at managing their own illness in turn and volunteering can strengthen their immune system.”

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Irish public transport: access all areas?

“At this stage, I thought “Do I really have to walk with my coffin under my arm to get a seat when I’m physically leaning on a walking stick while holding the handrail as if it was my best friend?””

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Thank you

No man’s an island, we weave connections through waves of emotions, through faith and happy occasions. This month, I’ve been very lucky to have found waves meeting others, and to have found people with the kindest of hearts, the softest of voices but the strongest of minds. This is for them. Joan, Aoife, Niamh, Karen, […]

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