My MS Bully and Me

Copyright: C King You may remember that at the start of lockdown, I wrote an article for the MS Trust and talked to them  regarding how MSers are good at dealing with change, reminding us that for some, we are dab hands at self-isolation, having already dealt with aspects of lockdown, including inaccessibility, not seeing family and friends, unable to access public toilets, having our lives turned upside down suddenly with relapses, and so on. When relating our MS experiences to lockdow n, I was very careful to talk about this in the context of change, something that, due to the unpredictable nature of MS, we are used to.  My language was deliberate: I didn't say that we would come out unscathed. It was a 'welcome to my world', balanced with a 'change is hard, but we'll get through it.' And we are. O ur resourceful mindset and our varied skillset have been hugely beneficial at this very strange time, but  we have now had to balance the extra challenges o...

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 was recently invited to write a guest blog for The World vs. MS, and I really enjoyed putting these thoughts on to paper. It made me reflect on my own disclosures over the years and how I've honed this into two kinds of conversation - a more in depth one with my manager and my 'elevator pitch' for more opportune, or unplanned, conversations. Updated September 2020: Reproduced with kind permission from @MSOnetoOne_EU (formerly TheWorldvsMS) as we feel it may be useful to others. Telling People at Work About Your MS So, you’ve been diagnosed with Multiple Sclerosis and, along with all of the emotional turmoil that comes with being diagnosed with a life-long condition, you’re also worried about work. The majority of MS diagnoses happen when people are in their twenties and thirties; a time when you are likely to be at an exciting point in your career, and possibly becoming technically expert in what you do. It is, therefore, completely natural that work will feature i...

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...

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 ...