My MS Bully and Me

Copyright: C King What can we learn from the Virus situation? Apart from the obvious, I really think there are lessons for humanity here and, given that we are likely to suffer some kind of global crisis again, I think these are worth noting. Good Things to Come from the Situation 1. People are reaching out, reconnecting and supporting each other. I genuinely have been moved by the kindness of neighbours. Within a week of the first government press conference on the Virus, several threads appeared on a local neighbourhood app offering to help those locked away, with shopping drop offs, telephone chats, even the latest tips on where to buy that elusive toilet roll (I kid you not!). 2 . Yes, o rganisations seem to have forgotten their disaster recovery plans, made after relatively recent terrorist attacks, only to be seized and enacted by new handlers. Yet b usinesses are finding creative ways to keep people working and connected, whilst still promoting remote working. Agile ...

I've been thinking about my last post in the context of recent events.  There is no question that when I wrote this, I felt frustration and disappointment. I thought that by talking about how I felt, it would be a way to turn it into something positive. Just as I suspected, I was approached by people for whom the blogpost resonated. I'm glad I spoke about it because it's not a topic people openly talk about very often. Plus, I'm an ENFJ, so... Copyright: C King Recently, I have realised just how fragile life can be. I know that sounds like an average platitude, but I never thought I would be presented with the opportunity to reiterate how true this cliché really is.  We always think we have time. I haven't spoken openly about this, so please bear with me. In September, my cousin was admitted into hospital with an infection. Her severe epilepsy brought with it complications, compromising her sight, hearing and communication. Whilst performing scans, ...

Copyright: C King I t's been very helpful to put pen to paper on a topic I strongly suspect others may relate to.  Ghosting: You may not be familiar with the term, but you're sure to have been ghosted in the past. It happens to many people. Firstly, if you have never heard of it, it's a verb. What is ghosting ? Lexico defines it as "The practice of ending a personal relationship with someone by suddenly and without explanation withdrawing from all communication." I wish it also added something like "you're an idiot; you don't deserve my friendship" but apparently that's not allowed, or something! (pah!) Note this says 'personal' relationship, as anyone you know can ghost you - your friend, someone you're dating, a colleague or family member. To clarify, we all lose touch with people over the course of our lives, but that isn't ghosting . The difference here is that ghosting is intentional. It's a sudden, cons...

Copyright: C King One of the most simultaneously exciting and frightening things in life is being a parent. Nothing makes your heart soar more than seeing your child achieve; nothing drives your heart to your mouth quicker than when they are fearless. For the most part, my parenting is like that of any other. Yet parents with chronic illness know that this creates an extra level of complexity. When do we tell our children about our condition? How do we handle questions? What do we do with the guilt of not always being able to do the things that other parents appear to do without limitations? I've spoken about chronic illness parenting guilt before. It's a unique emotion. This particular kind of guilt makes you doubt yourself. The biggest concern I have as a parent is am I doing it right? I always say it would be good if nature allowed us to give birth to our child, followed by a manual! My second concern as a parent is one specific to having a chronic illness: is my ...

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...

© 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...

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 - ...