• FEATURED: The social swing of life

    “It’s easy for relationships to become frayed because people interpret your life from their own 2-D perspective on a laptop, smartphone or tablet, and not from shared, interpersonal communication or experiences. Perhaps active listening has become unintentional hearing. Feeling compassion every so often turns to judging.” Continue reading

  • FEATURED: 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.” Continue reading

  • FEATURED: Irish public transport: access all areas?

    “At this stage, I cried of pain, physically and mentally. 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?”” Continue reading

  • FEATURED: The sorry state of neurology in Ireland: one year on

    “Positive reinforcement of governments past kept on suffering from their own kind of neurological illness, i.e. selective memory loss when these services so clearly demanded upgrades.” Continue reading

  • FEATURED: The right to die

    “In the end, the truly sad thing is courts denying people the right to live their own life and deal with death when someone is so obviously suffering. Sanctity of life is a personal matter, what you or I see in this is not up to a court to decide. Not now, not ever.” Continue reading

Disabled people aren’t broken

imapersonnotadisability-500x110

There’s a new movement slowly gathering pace in the world, one that I can only support.

On July 19th, Sierra Sandison was crowned Miss Idaho 2014. Not big news to some, but to those with disabilities, Sandison performed something short of a miracle during the pageant.

During the selection process (interview as well as the rest of the competition), Sierra wore her insulin pump. As she walked on stage during the swimwear round, her diabetes Type 1 insulin pump was very visibly strapped to her bikini. Beauty comes in many forms, something Sandison wanted to use as her beauty pageant cause, and inspire she did. Continue reading

Peak moments!

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Some days I just act like a right fruitcake. Brain cells acting out of whack, as if they decided to stay in bed all day.

Because it’s Sunday, I might as well forgive them. Perhaps I might even join them. Continue reading

Even more trouble with a WordPress premium theme!

To my previous apologies about the menu being cut in size by no fault of my own, I now also have seen the menu cut even shorter. I can assure you I am doing all I can to restore it, and if the menu issues are not resolved by tomorrow, I am going back to a free WordPress theme instead of continuing using one I paid lots of money for but which gives trouble only.

If you see my menu growing or shrinking this weekend, I’m not at fault.

annoyed-copy

© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

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? Although life was good in 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 his screaming babies and hectic lifestyle, I realised that in quiet, I made the right decision.

Being broody comes with being female, and despite my decision, I still get broody sometimes. If it wasn’t for MS, I absolutely would’ve 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, you 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

In a while!

A new post will be published here before Friday. Warm weather and a family visit joined my MS relapse which means time has been filled with lots of rest and relaxation. Looking forward now to writing again!

write-with-style

© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

And another one gone!

One day over 41, and mentally, I still feel like I’m 20. Physically, that’s a whole different matter altogether!

Our esteemed president of Ireland, Michael D. Higgins, once said “To be forgotten is to die twice.” Unless you don’t give a flying hoot about birthdays, people forgetting us on our birthday can sometimes feel a little bit… sad. That, however, is something I stopped doing a few years ago. Life goes on. Often not sure how, but it simply just… goes… on. Continue reading

National Annual Awards 2014

It’s the season of nominations, so why add your vote in MS Ireland’s MS Person of the Year, MS Carer/Helper of the Year or MS Volunteer of the Year for the National Annual Awards 2014?

As you already know, I applaud Multiple Sclerosis Ireland for the hard work they put into helping those with MS, and fight for those who care for them. The society has received many mentions in my blog here, and for good reason. From the day of my diagnosis, now 9 year ago, I have had the best people listening to my initial denial to now being supported in raising my voice for other people with MS today.

Many people have had the chance of being part of a very vibrant volunteer network, or have been helped by them. For those volunteers, carers, helpers or a person with MS, the National Annual Awards have been created: “Our annual National Awards recognise those who through their dedication and selflessness play a significant role in the lives of others and the progress of the Society.”

So, if you’re a member of a Branch, an individual member or staff, and you know a member who you feel deserve recognition, please nominate your special person in one of the three categories:

The closing date for nominations is Friday, August 1st 2014.

For more details about the awards, contact Alice McKeon on alicem@ms-society.ie or on (01) 6781608 or drop in to your local Regional Office to pick up a form.

The 2014 awards will be presented at the Annual General Meeting in September.

© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

Positive MS News: June 2014

clinicalResearch results

  1. Fatigue in Multiple Sclerosis Linked to Regional Brain Damage
    Multiple Sclerosis News Today – Fatigue, a common symptom of multiple sclerosis, could be a result of regional damage in the brain.
  2. Multiple sclerosis Reactivation of Epstein–Barr or herpes viruses not associated with MS relapse
    Nature.com – Infection with the Epstein–Barr virus or human herpesvirus 6 is associated with the initial onset of multiple sclerosis (MS)
  3. SLU researchers see possible answer to chemo pain in a multiple sclerosis drug
    Science Codex – A medication called FTY720 (Gilenya) is FDA-approved as a therapy for multiple sclerosis.
  4. Researchers publish one of the longest longitudinal studies of cognition in multiple sclerosis
    Medical Xpress – The article, “Cognitive impairment in multiple sclerosis: An 18-year follow-up study,” was epublished by Multiple Sclerosis and Related Disorders.
  5. Roche Turns to MS Research on Agreement with Versant Ventures
    Multiple Sclerosis News Today - will be dedicated mostly to the development of therapies for multiple sclerosis. Inception 5′s research will focus on multiple molecular targets.
  6. Embryonic Stem Cells Will Offer Treatment For Multiple Sclerosis: Study
    Counsel & Heal – Researchers have identified a novel approach to treating multiple sclerosis using human embryonic stem cells.
  7. Parasitic worm in pigs could help relieve symptoms of arthritis, multiple sclerosis, diabetes and
    Herald Sun - but it does not harm humans, and there is even evidence it can lessen symptoms in people with multiple sclerosis and inflammatory bowel disease.
  8. Researchers Report Alternate Explanation Discovery Of How And Why CCSVI Treatment Works In
    Multiple Sclerosis News Today - effects of “chronic cerebro-spinal venous insufficiency” (CCSVI or CCVI) treatment for Multiple Sclerosis (MS) and certain other disease conditions.
  9. Pregnancy Hormone Drastically Cuts Relapse Rates in Women with MS
    Healthline – Women with multiple sclerosis (MS) have long claimed that their disease seems to go into remission when they’re pregnant, and that they feel better.
  10. Human embryonic stem cells perform well in multiple sclerosis mouse study
    BioNews – ‘The cells not only reduced the clinical symptoms of multiple sclerosis but prevented demyelination, which disrupts the ability of the nervous system.

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, and don’t necessarily follow fashion to a T, hearing his words did wonders for my mind. The relationship didn’t stand the test of time, but sometimes I still say those lines to myself. Nine years ago, his words became a quick-fix mantra to pick myself up when I needed a boost. Continue reading

Blogging anniversary!

new headerBlogging 3 years today.

283 posts.

36000 hits.

949 followers.

1 Blog Awards Ireland 2013 nomination.

1 Blog Awards Ireland 2013 shortlisted in the Best Personal Blog category.

Thank you!

writers-block1© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

Positive MS News: May 2014

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

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My name is Billie. 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.

Continue reading

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, Declan, Trevis, Lucina, Miriam, Diana, Natalia, Ava, Ruth

My GP, MS nurse, neurologist, ophthalmologist and many others in the two hospitals I attend

The many friends back in Belgium and in Ireland, especially Claudia, Dirk, Susie, Jean, Audrey and Gratiane

and as always:

My mom who never gives up, even in the strongest of seas, every single day.

10155726_567734903324541_6254693841274862608_n© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

World MS Day 2014 in Ireland

Photo ©Naoise Culhane

Photo ©Naoise Culhane

Wednesday, May 28th is World MS Day. All over the world, people will organise events, wear orange, volunteer, work and/or attend conferences to raise awareness about an illness that so far, still cannot be cured.

While 2014 is the ‘European Year of the Brain,’ this year’s World MS Day theme is ‘Access.’ Whether this means access to information, medication, support, buildings, rights or services, somewhere near you people with MS, their families and MS societies will step forward and express their need for more awareness, understanding and hope that one day, MS will be eradicated for good. Continue reading

Medical Website Links

linksCentre for Mindfulness Research and Practice UK

eMedicine Health, experts for everyday emergencies

Everyday Health

Johns Hopkins Medicine

Mayo Clinic

Mindfulness – Your Present Moment

WebMD

Weight Watchers

© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

Disability Links

 

linksfffConvention on the Rights of Persons with Disabilities (SCRPD)

Disability and the United Nations

European Network on Independent Living (ENIL)

Universal Declaration of Human Rights

© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

Neurology Links

enlacesJournal of Neurology & Neurosurgery

Journalwatch Neurology

Netmed Neurology

Neuronetwork Ireland

Neuroscience Ireland

© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

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