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...

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 ...

  Out & About, Copyright: C King There are a lot of conflicting things about chronic illness that those without it find confusing. I write this blogpost having just posted a celebratory post on Facebook, including pictures full of joy and my looking, frankly, extremely well!  But it struck me that despite these photos having been taken on the previous day, there might be those on my feed that might wonder how I might seem fine one minute and not the next and, indeed, why I posted these pictures at all. How might someone understand without having it spelt out? Is this the barrier to their understanding?  So I thought I would produce a sort of 'chronically ill friend etiquette guide' to perhaps dispel some myths and help non-chronically ill friends better understand. 1. Chronic conditions fluctuate Not long ago, I overheard a couple talk about someone they viewed as not being genuinely ill, in a way that I am sure they wouldn't dream of doing in person. Even r...

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, ...

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...

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 - ...