Tag Archives: MS

[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.

0% responsibility – 100% accountability

1ebc241f7cb451636a9ff3ccedcf4945Imagine this… Some time ago you were finally able to give answers to these two questions, “Who am I, and what is my purpose in life?” While admitting the questions were rather philosophical as well as personal, you are suddenly thrown back to square one, and you once again want to find out who and what.

Ouch.

Like most people, my answers came and went as every meaningful tide in life left a new imprint on my senses. Continue reading

MS News: January 2017

clinicaltrials

Go red to Kiss Goodbye to MS campaign!

  1. Supporters in County Donegal asked to Help Kiss Goodbye to MS
  2. Supporters in county Longford asked to Help Kiss Goodbye to MS
  3. Co Leitrim people are being asked to help ‘Kiss Goodbye to MS’

Highlight!

  1. The top 10 drug launches of 2017
  2. The year in new drugs

Continue reading

Hell is other people

da11fbf1c3e131f6b8f0649409bf6001To write is to have a third eye on the world. You watch the world spin day after day, and in your mind, you write social commentary to give it a place in your life. Quite often, though, after reading your perceptions a few weeks later, you realise that what you witnessed has completely lost its meaning.

Like this, I have seen the best and the worst of what mankind had to offer the past six months.

There are people in today’s society who have the purest and most thoughtful minds you can wish for. They add serenity and integrity to your life, and they always bring out the best in you.

On the other hand, there are toxic people who have never learned what altruism and dignity is, and who lack insight into what makes people – including themselves – tick. They go on the attack without working out a game plan first and have a habit of calling you “oversensitive” or “you are just misinterpreting me” when you try to verbally counter their attack. Continue reading

Happy 2017!

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New posts will appear here soon!

In the meantime, happy new year!

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©WVE and Ireland, Multiple Sclerosis & Me, 2011-2016. 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.

200 days

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200 days.

Being a perfectionist, of course, it had to be precisely 200 days.

Six months and nineteen days between my first multiple sclerosis symptoms and its very diagnosis.

Little did I know that it would eventually transform my life.

It was September 2004, and I had just dropped off my mother at Dublin Airport for her return to Belgium. On the way home, a strange sensation took hold of the left side of my face, as if it had been injected with thick rubber. Thinking nothing of it, I went back to bed to catch up on lost ZZZs.

I slept for hours.

And hours. Continue reading

Conversations with myself

14222347_1101763419917442_6482430576462991914_nNot that long ago I was caught talking to my MS medication – all 28 tablets a day – in the hope they’d finally get their act together and start doing what they’re supposed to. Work. Things. Out.

I believe the phrase was, “If you are my Ross, I will be your Rachel.”

Sure, I’ve thought crazier things than that. If people would know what I’m thinking half the time, they’d take me straight to emergency and say I tore all the ligaments in my head.

Two of the biggest life lessons MS taught me, is that you can just as well have fun, and what you think, you become. A bit of semantics here and there. A touch of rhetoric too. And a tiny bit of Ubuntu if you like. Rather like, “I’m medically fascinating.”

I’m chronically fabulous too.

(Or so I am told)

I step on my own toes and hurt my own ego for the sake of applying a bit of black humour to the conversation to stop the person in front of me worrying about my physical state. So, I’ll be damned before I start taking myself too seriously. Stepping outside the box doesn’t work because I was never in the box, to begin with, and I never will be. Continue reading

Difference between fibromyalgia and MS

Note: I am not a medical professional nor do I intend to provide any medical advice to anyone. Please see your physician or neurologist if you have any health care concerns. My intention is to provide accurate information from the perspective of an informed patient.

Sometimes it’s hard to pin down which illness you have, as symptoms can look and feel alike. This is the case with MS and fibromyalgia. However, they are very different illnesses.

Despite the overlap in symptoms, diagnostic methods and profile risks, having one doesn’t put you at a higher risk of having the other illness.

If you suspect you have MS or fibromyalgia, please seek medical advice. A rheumatologist will be able to tell you if you have fibromyalgia, and a neurologist if indeed you have MS.

Continue reading

disABILITY

Disable Inequality

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© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. 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 Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

MS News: August 2016

index

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!

  1. Guidelines for Neuropsychological Research in Multiple Sclerosis
  2. Multiple Sclerosis Journal
  3. Johns Hopkins Medicine: Multiple Sclerosis
  4. Benign MS
  5. Multiple System Atrophy Research
  6. $2 Million Grant to Study Fatigue in People with MS
  7. What health conditions do people rank as worse than death?
  8. Multiple Sclerosis in Children

Continue reading

MS News: July 2016

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Researchers at Queen’s University Belfast have begun a £2 million research programme to investigate reversing the damage caused by Multiple Sclerosis.

Highlight!

  1. Childhood MS: A guide for parents
  2. Queen’s University Belfast Awarded £2M in Bid to Reverse Myelin Damage in MS
  3. Exploring Multiple Sclerosis from the Inside

Continue reading

40 Self-care strategies

We all get preoccupied with our personal, social and professional life sometimes. In doing so, we often forget that self-care is quite important. After all, ‘mens sana in corpore sano’ or ‘a healthy mind in a healthy body’ is one of the biggest and best gifts you can give yourself. For those less fortunate in the health department – including yours truly – you can adopt a few easy steps to make yourself feel better physically, mentally and emotionally.

You can only move forward in life when you take ownership of everything in it, my mantra is ‘Life is 10% of what happens to me and 90% how I react to it.

With that in mind, so, practising below hints makes them a lot more easy to follow.

Morning

  • Wake up early. Carpe diem! You get a lot more done when you wake up early and seize the day.
  • Start your day with five minutes of breathing in deeply through your nose, holding your breath and then breathing out through your mouth. Put your hand on your belly, and feel it rising and falling noticeably while breathing. You can easily do this lying down or sit in a chair.
  • Add a good cleansing ritual by drinking a glass of warm water and lemon before having breakfast.
  • Continue drinking fluids every day, especially when you take a lot of medication.
  • Take as much time for breakfast, lunch and dinner as you need, and let the food settle in your stomach before sitting or lying down again to avoid indigestion.
  • Don’t forget to get the necessary rays of direct sunshine to get some vitamin D. Cloudy days limit your intake and sitting behind glass doesn’t produce vitamin D, so you need to go outside and find some sunshine.
  • Prioritise your daily or weekly tasks to get as much enjoyment and time out of it as possible.

Continue reading

Mental or physical, your choice

10906095_10152968660468908_3270331244306118983_nAfter the fun-filled celebration of having to scroll further down age-selection forms on the internet yet again, I felt rather bemused at how fast life was whizzing through highs, lows and the “despite this/that…” moments.

So, once the usual questions “How’s the facial pain going?” as well as “Willeke, why do you never smile at the camera?!”, I wanted to give as much information in one sentence as possible. Sometimes it’s good to be low on energy as it automatically stops you from talking about “that” subject for the rest of the day.

“That” → MS. Facial pain. Or pain, period. Continue reading

MS News: June 2016

Research

  1. Nerve-insulating cells more diverse than previously thought
  2. Heart monitor implant could save lives in patients with serious immune disease
  3. ANKRD55: New gene involved in Multiple Sclerosis discovered
  4. In MS, can better sleep improve cognition?
  5. PET detects neuroinflammation in multiple sclerosis
  6. Multiple Sclerosis and Fibromyalgia – is there a connection? – Patient Talk
  7. CD8 Cells after Immunological Stem Cell Reconstitutions
  8. Progressive multifocal leukoencephalopathy in a patient without apparent immunosuppression
  9. Antibodies in the CSF may be secondary to damage
  10. How do cells enter the Brain?
  11. ResearchSpeak: grey matter lesions
  12. Link between gut bacteria, MS discovered
  13. Continued inflammation in SPMS – the role of antibodies to galectin-3
  14. Obesity and multiple sclerosis: Is there a causal relationship?
  15. Gut Microbiota is different in MS
  16. The autoimmune predilection: rheumatoid arthritis in MS
  17. Tracking brain atrophy in MS could become routine, thanks to software developed at UB
  18. Diet and Gut Microbiome Influences Multiple Sclerosis Disease Activity
  19. Cerebral Microbleeds May Be Linked to Disability in Multiple Sclerosis

Continue reading

GUEST POST: Using Social Media to Connect With Other MSers

Guest post by Debra Robert, contributor to the Canadian NewLifeOutlook MS website.

Social-Media

Twelve years ago I found myself at the bitter end of an unhealthy and tumultuous relationship.

I have always been pretty darn good at being alone. I like my own company. After a couple years on my own however, I began to lose sleep. I’d lie awake in bed wondering if I was to be alone for life.

Around that time, I instinctively began reaching my hand out the window beside my bed. I felt the need to feel the evening air, to play with the weight of the wind on my fingers. I consoled myself imagining that the gentle breeze that wrapped around my hand was actually the touch of a caring friend. The night air was my conduit to the rest of the world, and the feel of wind brushing against my hand got me through difficult nights of fitful unrest. Continue reading

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