Happy 2018!
Happy New Year!
Where is my left cheek?!
Trigeminal neuralgia feels like a vicious affair, and it is still hard to know who came first, TN or MS. Being a lover of Shakespearean drama, they would tell you they arrived around the same time.
Humans Multiple Sclerosis
When it comes down to awareness-raising and thought-provoking initiatives in the health charity sector, fresh ideas are often hard to find. Not so for Joan, a dear friend of mine. After her original Selfie Book idea created by her regional MS branch for World MS Day in 2015, Joan wanted to expand this Facebook idea and create a book for newly diagnosed people. Her own diagnosis – raw, no counselling, no management plan or words of inspiration from others who already walked down the same path, was something she wished had gone differently. In short, Joan was looking for a sign of hope, and something “telling me how people can get on with living a good life and that it wasn’t the end.” She introduced her Humans Multiple Sclerosis project to the Irish Minister of Health…
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.
World MS Day 2025: Early Diagnosis after 200 days
"To many, life with MS can seem like a book where letters have been replaced by numbers or where the cover can be too hard or too soft for its content. Because of this, I don’t want them to see what MS can turn into. I refuse to show them that there is no cure, I refuse to give them a reason to give up on me. In my view, it is very much a case of the illness being mine, but the tragedy theirs if I let them."
Multiple Sclerosis: The First F____ed Fortnight
A very beautifully written post by my friend Emma, who goes over her first few hours and days after her MS diagnosis. “There’s no doubt, it has been raw, it has been ugly with cursing and swearing, lost relationships dodgy decisions. But I everyday I make peace with myself, I give thanks that I have another moment to live. Because there were times when I didn’t see any hope. I was soaked in blood, sweat and the tears of a thousand years.” (Republic of Emma) Continue reading below…
Making Sense of MS
One of the many things people newly diagnosed with MS (PwMS) look for is information on what their illness will have in store for them. From thinking back to when I was discovering what MS might be like, I remember an overwhelming feeling of “where on earth do I even begin?” when I finally went online. I was numb and in denial but knew I had to find out more if I wanted to create a realistic idea of it. Approximately 5,000 people are newly diagnosed with MS each year in the UK, and for this reason, the MS Trust commissioned the “Making Sense of MS” resource to highlight the need for more information at the time of diagnosis.
