My MS Bully and Me

                                                         Copyright: C King It's been over a year since my last post and, if you're missing this blog, you're probably wondering where I have been. To say that I have been been resting on my laurels would be an overstatement, given that I'm not very good at pacing. After months of home-schooling finally ended, I threw myself into supporting others, including advocating for them.  I have been particularly busy in my advocacy work - guest blogging, filming, reporting, mentoring, public speaking. This year, I've also been a member of the All Party Parliamentary Group (APPG) for MS, which has been extremely interesting, and supporting others in navigating a health system which, whilst amazing, can be sometimes monolithic and uncommunicative at a time when some are going through the most difficult ...

We're nearly in May, and you may be wondering where on earth I have been. Well, you can probably guess that, like most of us, I have been at home, and I have been rather busy. I was also quite ill for about 12 days, so needed time out to focus on getting about without getting breathless! Guest blogs and podcasts Following my article on mental health for their Open Door magazine, the amazing MS Trust invited me to talk about MS and mental health in a fantastic podcast series called 'It's All in Your Head'. Hear my dulcet tones in Part 1 of the series at 19:30! I also wrote an article about how MSers are in prime position to deal with the COVID19 crisis, due to our unusually relevant experience. This was very well received by our community, and I was invited to a one-off special podcast, called ' Coronavirus and MS: Your questions answered' (hear me at 22:20). I would highly recommend listening to the MS Trust podcasts , which feature healthcare profe...

© C King This week is the ten year anniversary of my MS diagnosis. Having a diagnosis anniversary is unlike any other. You don’t celebrate. There are no gifts.  It’s a reminder of how much you’ve lost and how far you’ve come. You remember it with both sadness and hope. For me, it’s been an opportunity to reflect. Of course, I’d be lying if some of this didn’t involve thinking about where I was as a person ten years ago. No fatigue, lots of energy, virtually no pain (other than the relapse confirming diagnosis) and living day to day. I never felt the need to look back and had no concerns about my future. I even wore heels. I was diagnosed two months into my marriage and well into the mindset of having children; not so much a want as it was a need. Even then, I had other parallel health conditions, such as PCOS. Professionally, I was in demand and at the peak of my career; very much an expert in my field.   When you reflect, it’s hard not to revisit the...

Oh God, I've forgotten to buy the brussel sprouts and the world is about to end! Alright, which one of you moved the French baguette? What do you mean, you’ve eaten it?! That was for the Christmas MEAL! Okay, okay - I think I still have the bread machine somewhere. Flour, check, salt, check, yeast… where did I put the..? I. Don’t. Have. YEAST! (As you hyperventilate, you momentarily consider packing a bag and buying a last-minute one-way ticket to Spain. No one will notice.) In principle, those with chronic conditions love Christmas as much as anyone else, but the reality is that it can be anxiety-inducing and energy-draining. This isn’t just about the panic that descends upon our houses over a twenty-four hour period. It’s also about the fatigue brought about through entertaining others, the overwhelming – and growing - number of tasks leading up to and on the day, the need to create the perfection that is kids’ Christmas, and the aftermath in the subsequent few days that kno...

I am sometimes asked why I called this blog 'My MS Bully & Me' (I know it should read 'My MS Bully & I' however the 'Me' sounded better!).  I have always considered my MS as part of me, but not who I am. I often hear others saying their chronic condition doesn't define them, and perhaps this is what they mean. I see the MS as something I didn't ask for or deserve. An unhappy accident. A convergence of many different factors, both physiological and environmental, that just happened to culminate in creating this particular condition.  Whilst MS is relatively common, particularly in certain geographical areas, it has not featured in my immediate world or in my upbringing. I am the only one in my family to have this condition. In many ways, I am supremely grateful for this. But I do see it as something to bear, rather than any kind of blessing. I often refer to my condition as "my MS," when actually I feel it easier to think of t...

Dear MS Bully, Congrats on grounding me, especially these last few months. You've been working really hard; it's been a humbling experience. However, I just wanted to remind you that you don't know me quite as well as I know you.  You may well try to pull the wool over my eyes with your 'cog fog' and stall me with your fatigue, but I know something you don't. I know me. Which means I will always make an extra effort to be as much of a thorn in your side as you are in mine. I will not yield to your demands unless I really, really have to. And even then, I'll find a way to be wilful - perhaps soak up that Vitamin D that much longer or take my boy to sports camp; perhaps limit your control over me by speaking at events, or may be I'll just keep writing this blog (I have dictation software. so whatevs!). Because of you, I have found a strength and a voice  I didn't know I had. I am pretty confident that I can stay strong through adversity. I am f...

Copyright: C King It's Mental Health Awareness Week and I thought I'd spend a little time thinking about MS and emotions. When I reflect upon my MS journey, it is tinged with a little sadness, which is only human after all, given the long journey we have spent together. MS brings about many emotions and depending on the day, MS isn't at all on your radar or it can weigh heavily on your mind. There are many reasons why MS can be such an emotive topic. We don't know what will happen Emotions: confusion, depression, hopelessness No one can really say what will happen in their future, but for someone with MS, this concern is borne out of a very specific piece of knowledge about ourselves, and no one can tell us what will happen with any certainty. Many of us with Relapsing-Remitting MS find the unpredictability of MS difficult to digest. With friends, family colleagues, this hits us twice - both in our dealing with this emotion in ourselves and in others. We...

I woke up one wintery October morning having had a largely successful, but particularly stressful, working week. This morning was a little different. I could feel my feet and legs, but some parts had pins and needles, others numbness. After having a mild panic for a few moments, I put this down to a potential infection and continued with my day. Having convinced me to go to a doctor to check this out, my husband joined me for what would be an appointment with a locum who was both dismissive and patronising, and who left me with the words "I can't find anything wrong with you; this is very subjective." She then proceeded to give a dismissive laugh and suggest I see a neurologist in a few months. I will not bore you with the details but after further wranglings, I decided to go to a private doctor (please don't judge me!), where I was prodded and poked via various tests. Just before Christmas 2008, I was given a firm diagnosis. The MRI evidence suggested it was ...