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.”

Read More

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.

Read More

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.

Read More

The day I stopped being weak

Tired person running

You never know how strong you are until being strong is the only option you have. How true is this? You lose a parent, a brother or sister, or someone else you dearly loved and yet, time goes on. Time has to go on. For your family, for yourself. Years later you realise you went […]

Read More

MS News: August 2016

Below are some MS-related topics that made the headlines this month. Do come back to check again, though, as the list will be updated every three days. Highlight! Guidelines for Neuropsychological Research in Multiple Sclerosis Multiple Sclerosis Journal Johns Hopkins Medicine: Multiple Sclerosis Benign MS Multiple System Atrophy Research $2 Million Grant to Study Fatigue in […]

Read More

Mental or physical, your choice

“Is life with MS that comfortable, then? God, no. Absolutely not. You just have to learn how to live with it. Somehow I found a way to tap goodness from those negative connotations because I listened to its actual narrative by refusing to make a mountain out of a molehill. So, even when facial pain is also called “the suicide disease”, even when MS fatigue can knock me senseless in less than five minutes, and even when I feel awful inside despite not looking sick, I am just cool with the whole lot because there simply is no other way.”

Read More

Preparing for your neurological appointment

Seeing your neurologist can often make you feel anxious or afraid to speak up. Each appointment should be about exploring options, not about being bulldozed by a standardised litany of things you don’t want. Going in prepared will make you feel more at ease, so why not make a list of vital questions and things you […]

Read More

Disable Inequality

It’s been rather quiet down here. The past four to five months, I’ve been involved in disability rights campaigns and had a long much-needed Christmas and New Year’s break. I’m now back to passive campaigning in some form or another while having the flu… it’s never boring in MS-land. With the Irish election campaign in […]

Read More

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.”

Read More

Responsibility hurts

“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 reminds you that being chronically ill sucks. It’s energy depleted in all the wrong places. There is no uptake to being ill. There is no room for manoeuvring when you’re faced with an illness that will -quite literally- be there until you draw your last breath.”

Read More

Trading pens and ink for bullets

“My own freedom of speech means the need to write, to create, to share, to ask, to think, to discuss and then create again the way I intended, the format and content I choose. It’s not only my basic human right, but it’s yours also and should be upheld regardless of country borders or religious background.”

Read More

13!

Thirteen years ago today I moved to Ireland. A teenage dream turned reality. Little did I know that 2,5 years later, my life would be transformed in a way I had never imagined. Still, there are no regrets, and where anger could have lived, none is left for two chronic illnesses that could easily have […]

Read More

What a difference a needle makes

Needle anxiety. We all went through childhood being afraid of injections. But why would someone have needle anxiety when what you’re about to self-inject every day, in fact, slows down the progression of your chronic illness? Although my emotions regarding needles do not amount to belonephobia, I have gone through moments where I simply could […]

Read More

Mental Health Ireland

Fasttrack General Practitioners, GPs, Family Doctors, Pharmacists, Dentists, Hospitals. It also provides contact phone numbers. Type your address in the box below. The Atlas will search automatically – choose an address from the search results. A map of your street will appear. Health Atlas HSE mental health support HSE mental health professionals National office for […]

Read More

10 ‘Little rebel, me’ mistakes

Are you a list person? I am, that’s a given. After wasting time on websites like List Challenges, I thought, ‘Well, how about the ten worst things I’ve done since being diagnosed, with a follow-up on the best things I’ve done since that day in 2005?’ Quotes are added to underline my thinking, ideas or […]

Read More

Fake it ’til you make it!

“Your conscious mind gives your unconscious the task to change your outlook on life, and it is slowly being bent into thinking you’re a champion within your own league.
The beauty is this: the brain in fact doesn’t really know the difference between your mind’s visualisation and reality. And therein lies the power, not the slightly negative connotation of wanting-to-be/do-something, but the positivity of having or being it already. If need be, fake it ’til you make it!”

Read More

MS News: June 2015

There’s only one topic in the Highlight! part of the good news list this month. In my view, more private firms should be involved in clinical research, sponsorships of medical institutions etc. In essence, it’s in everyone’s best interests, i.e. everyone’s health, theirs included. What’s your view on this? Answer below!

Read More

World MS Day 2015 Around the World

For the second year in a row, ‘Access‘ is the main topic of World MS Day.   Access means a lot of things, so do volunteer in if you want to help others achieve everyday issues. Don’t forget to tag your events with #strongerthanMS and @WorldMSDay. Access Our campaign theme for 2015 is access: access […]

Read More

I’m an ex and I’m lovin’ it!

“I used to be a lot of things. Busy. Book addict. Ireland lover. Passionate. College student… and perhaps a tad crazy also. But then friends started saying that I was “slowly turning into a blonde”. Physical discrimination on the basis of hair colour aside, I felt they had a point.
Concentration skills went from hero to zero. Walking from the couch to the fridge a massive undertaking. In tears in front of the staircase after work because I had to sleep for an hour before being able to scale its height.”

Read More

The miseducation of…

“Ergo, the benefits of having MS is that I met my other, weaker self, and I learned how to be strong and wise before my own eyes, and at the speed of light. Even E.T. couldn’t follow me on his BMX bike. He tried, the little fella, but lost my phone number. Go figure.”

Read More

Dream, Think, Believe, Dare, Do!

“I admire Montel Williams for all the passion he puts into advocating MS in the US, and I could have picked his much-used his phrase “I may have MS but MS does not have me.” For a good while it was a crutch to lean on every day, but I am now at a stage where it has worn out to the very one thread it was built upon. I’d rather opt for a different benchmark so, and therefore chose to underwrite an adapted Walt Disney quote instead.”

Read More

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.”

Read More

MS News: October 2014

“54 New MS Research Projects to Receive Millions of Dollars in Funding.” I can only jump up and down like a child at Christmas reading about this. 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.”

Read More

Making sense of MS

“Even with forced rest breaks and scheduling tasks around my MS, I still have a way of falling asleep in the most unusual poses and ways. If I were to introduce you to my mum, she could keep you up all night with my falling asleep antics. Of course, she’d still be talking to you, while I ungracefully slump over, drop books, am asleep within the first 3 to 5 minutes, sleep through loud fireworks, airplanes or my own house alarm blaring loudly. Like my nana always used to say, “When you do something, you have to do it properly.”

Read More

Defined by myself

“As you can tell, I have lots that strengthens me and drives me forward. I also have (dis)abilities: severe bouts of pain and fatigue, which I bent into a positive writing tool for others to lean on. My limitations serve as other people’s motivation. Their motivation became my inspiration.”

Read More

The first day

Change is good. So they say, anyway. I totally agree, in fact, I welcome change with open arms. Afraid of new challenges? No, not me. Because change is good.

Read More

Liebster Award! (no. 4)

Here is the other Liebster Award that was sitting here idly without being forwarded. Tamie’s Realm kindly nominated me and needless to say, I am very happy about it! As always, nominations – which are winners in WordPress blog terminology – need to follow a few steps when passing on the award. Here are the […]

Read More

30 Things about My Invisible Illness You May Not Know

I was sent this list after National Invisible Illness Week ended and asked if I wanted to write about it either way, so here are my answers: 1. The illness I live with is: Multiple sclerosis, the house guest that ends up on your doorstep, invites himself in and never leaves again. 2. I was […]

Read More

Five-year plan

Bad tidings always happen when you least expect it. Your plans for tonight, next week or the following year get punched right in the stomach and you have to regroup. Not only does rearranging your life involve more people than just yourself; your family, friends and colleagues need to find out where you and your […]

Read More

You never know how strong you are…

One of the most emotional journeys you could go on, is meeting yourself along the road of a diagnosis you never wanted to happen. It will make you, shape you and perhaps take you somewhere you don’t want to go, but for now, you have to. You lose a parent, a brother or sister, or […]

Read More

The road well traveled

It’s always nice when people see positive changes in you, especially when they took a long time to manifest. A famous quote goes that “happiness is a journey, not a destination” and there is definitely some truth in that. Despite a few minor setbacks on a health level, I’ve sailed through my main illness this […]

Read More

Captain Jack is back!

Oh yes he is… or rather: she is! Or I am… With quite a captain-look. Black eye patch hiding an eye so desperate to jump out of its socket and an eye that is telling me to stay away from reading, writing and watching television. Hhmm… somehow that is quite hard to do in this […]

Read More

Letting go

Life seems like a joke, out to get you when you least expect it. People disappear from your life, but it’s not until after they’re gone that you realise how much you liked being around them. Or, you understand what being truly happy means because you’ve known absolute sadness. Or you start appreciating silence because […]

Read More

The stalker called MS

In my job I often had to do “root cause analysis” assessments on what went wrong with a certain account and how we could “cure” it again. I miss the term “root cause analysis” and I thought I’d do a one on myself, or my life. What the heck, it’s not like I have anything […]

Read More

Welcome to the book fetish club!

“There are worse crimes than burning books. One of them is not reading them.” (Joseph Brodsky) There’s no certainty in life anymore. You can lose your job… just like that; you can be so stressed your heart starts beating much too fast or you can end up in fights even when you tried so hard […]

Read More

Dublin: a state of mind

‘Dublin is as much a state of mind as it is a city’ Tom MacDonagh   It is, that I can tell you for sure. Dublin has a way of getting under your skin. In a good way and in a lesser way. Dublin is Dublin is Dublin, but sadly Irishness is disappearing from the […]

Read More