I watched a You Tube TedTalk this morning entitled What Happens When You Have a Disease That Doctors Can’t Diagnose. It is presented by Jennifer Brea who suffers from ME (Myalgic encephalomyelitis), also known as CFS (chronic fatigue syndrome). A link to this video can be found here: Click here This woman’s plight really resonated … Continue reading Lost in a Medical Wilderness
I felt truly awful the day after writing my previous post. My legs felt like lead and although I needed to get some things from town, I didn’t feel confident driving the car. Since I live on my own, I began to feel a bit worried in case I fell over and no-one except my … Continue reading Seeing Things Differently
My Pharmac funding was approved and I’m now in my fifth week of taking a Biogen manufactured drug called Tecfidera. I started on one 120mg tablet per day and have gradually increased it to the point where I’m now taking two 240mg tablets daily which is the maximum. The active ingredient in Tecfidera is dimethyl … Continue reading Drugs, Drawbacks & Discoveries
I haven’t written much about my MS lately, primarily because up until about July this year it just bubbled along in the background. Always there, sometimes painful and a bit debilitating but on the whole, not causing me too much grief. I was diagnosed with MS when I was 56 which is unusual because the … Continue reading MS – Eying up the Future
I wondered whether we’d offended Serafina by not leaping to support the C.A.T. Extinction Rebellion after her “address” at the Mindfulness meeting because we didn’t see her for several days after that. The fact of the matter was that not one of us had the faintest idea what we were supporting or how this extraordinary … Continue reading Weasley’s Breakfast Show
The Back of My Mind was the title I used when I first started to write my blog about the symptoms which eventually led to my being diagnosed with primary progressive multiple sclerosis three years ago today. Vague feelings of malaise were not new to me. In my early teens I experienced a range of … Continue reading The Back of My Mind
As hard as I try to stay positive about my MS, I have to be honest and say that the last couple of weeks have been a challenge. The problem with something like MS is that symptoms that “normal” people suffer (like my current problem which feels like a pinched nerve), immediately get filed under … Continue reading Striking a Nerve
A Facebook post with a video of a deaf girl telling her story about how she became deaf and then singing so beautifully on one of the reality shows, got me thinking. The friend who posted it made the observation that running their first half marathon seemed like a very small achievement in comparison. I … Continue reading Still Able to
For sufferers of MS, this is no laughing matter! The Urology Dept advised me of my upcoming renal ultrasound saying: Drink a litre of water 90 minutes before your appointment until your bladder is very full and DO NOT empty your bladder prior to the procedure. Ha ha ha – you’ve got to be joking 🙄 (makes … Continue reading Can You Wait … ?
Two years today since that crazy time when I was sitting in Christchurch Public Hospital wondering what the hell the future had in store for me. The most frightening thing for me wasn’t learning that I had multiple sclerosis. It was that my MRI results would be reviewed and reported and that I would be … Continue reading Two Years On
