My MS Bully and Me

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...

A few months ago, I wrote a poem catchily called 'Thank You to my Support Network' (that was clearly a bad day for creativity!). The poem was as a result of a few months of turmoil involving my health. During this time, I went under the radar, as I wasn't able to leave my home so became quite isolated. As a result of what was happening to me, I found myself with terrible periods of fatigue that left me unable to even think of picking up the phone to call people. What energy I did have was put into the only form of connectedness I had which was online, both through this blog and in online communities. These were wonderful life savers and I thank you, as part of my extended network, for allowing me the opportunity to be me. There is something so wonderful about the spoken word. The intonation and expression convey all of the emotion and subtle undertones of what is going on. After having received some really great feedback about my poem, I thought I'd vocalise it so her...

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...

I wrote this poem the other day whilst watching a television programme. I've not been feeling very well these last few months, so I really need others to understand why I'm flying under the radar at the moment. I'm not sure which muse I channelled, but I think it very much sums up how I feel about my communities, both personal, social, medical and online. Thank You to my Support Network People say I look well, And they say it with heart, I say “I’m fine!” (I've got it down to an art!). The invisible pain, Being careful with stress, The fatigue, cog fog And other nonsense. Would you really want to know? Would you be able to cope? Uphill on a MeSsy slippery slope. Yes, sometimes I cry When the future’s unclear, Every memory is precious, Every moment is dear, But there’s no death or disaster, Insurmountable blow, Just unpredictable hope - Time to recover and grow. Thank you for empathy, Patience - too kind - ...

I make no apologies for the initial reason for writing which was purely for some creative therapy! And this works. I get to absorb myself in the writing, sometimes going 'there,' so you can see the true side of MS. However, by proxy,  something else quickly developed when I first began writing. When I look back at my career, indeed all the roles I have undertaken since the age of fifteen, I've always helped people. As cliched as this sounds, I have! This very easily translated into this blog.  It is so important to me that I help others better understand MS, be it their own or that of others I wrote this blog for me and now I write this for both you and I. 6,500 of you have dropped by to read my wonderings, and I really appreciate it. I hope you get something from them too. Remember that of you'd like to be notified of more of my crazy, sorry,  insightful writing, please feel free to like my page which provides info over and being my blog: https://www.facebook.c...