My MS Bully and Me

                                                         Copyright: C King It's been over a year since my last post and, if you're missing this blog, you're probably wondering where I have been. To say that I have been been resting on my laurels would be an overstatement, given that I'm not very good at pacing. After months of home-schooling finally ended, I threw myself into supporting others, including advocating for them.  I have been particularly busy in my advocacy work - guest blogging, filming, reporting, mentoring, public speaking. This year, I've also been a member of the All Party Parliamentary Group (APPG) for MS, which has been extremely interesting, and supporting others in navigating a health system which, whilst amazing, can be sometimes monolithic and uncommunicative at a time when some are going through the most difficult ...

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...

We're nearly in May, and you may be wondering where on earth I have been. Well, you can probably guess that, like most of us, I have been at home, and I have been rather busy. I was also quite ill for about 12 days, so needed time out to focus on getting about without getting breathless! Guest blogs and podcasts Following my article on mental health for their Open Door magazine, the amazing MS Trust invited me to talk about MS and mental health in a fantastic podcast series called 'It's All in Your Head'. Hear my dulcet tones in Part 1 of the series at 19:30! I also wrote an article about how MSers are in prime position to deal with the COVID19 crisis, due to our unusually relevant experience. This was very well received by our community, and I was invited to a one-off special podcast, called ' Coronavirus and MS: Your questions answered' (hear me at 22:20). I would highly recommend listening to the MS Trust podcasts , which feature healthcare profe...

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, ...

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...