My MS Bully and Me

Copyright: C King In the late 1980s, a well known pop duo sang "She's got the look". This song came to mind as I stood at the bus stop waiting for my bus which is notoriously devious in not announcing itself via the destination board. Why was this song in my head? Because today, silly me, I don't look sick.  Apparently, if you wear a stonking, great badge saying 'Please offer me a seat', this actually means you must be absolutely fine, as well as having a predilection for the colour blue or large badges, or playing an April Fool's joke on anyone you meet. This badge seemingly provides an excuse to raise the newspaper over your face or stare intently out of a dirty window at traffic. If you're not doing any of the above, you're suddenly finding the floor extremely interesting. In fact, I'm pretty sure that someone once even had a pretend conversation on their phone to avoid the overwhelming awkwardness. Are we having a rant today? Y...

  Copyright: C King How can having an invisible symptom be useful, I hear you ask. I'm going to start this off by being very clear that I'm not suggesting that being invisible in itself is useful or that those of us with chronic illness are deliberately hiding our symptoms. Nor am I encouraging people not to share their condition with anyone.  On this World MS Day, social media will undoubtedly be flooded by posts about invisible symptoms. Rightly so, as it's important for non-MSers to understand these symptoms, and perhaps for others in chronic illness communities to see the relative similarities and differences in our conditions.  I'd like to do something different, however. I would like to look at when having symptoms that are invisible, may be advantageous. When we're not ready Sometimes, we just aren't ready to show our hand. This is true of lots of situations. As a member of various online forums, I see people who have just started dating someone...

Credit: C King As a Coach, I sometimes use the Kubler-Ross curve when clients are facing some kind of transition. Having worked with the model for a number of years, I've more recently u sed it with those newly-diagnosed with a chronic condition. However, over the years, I've also come to  a few realisations that help deepen the understanding of the model, including around my own interactions with it. The Curve is not always linear I've always heard the Curve described by others as going from Point A to Point B. You experience shock and gradually work your way through the emotional stages toward acceptance, as if a simple and straightforward process: "Right, you've reached acceptance, congratulations!" As with others hearing the news of a diagnosis for the first time, I went through each of the emotional stages one by one but I'm not sure that in nearly fourteen years, I have ever accepted MS in either body or in life. I acknowledg...

I just wanted to pip in and say Merry Christmas and a happy, healthy 2019! Over 8,700 visits in the last 6 months. Visitors from all over the world are welcome! Happy holidays from my home to yours. Carla 🎄🎄

© 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 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...