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 ...

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...

Copyright: C King It's January, and I've given up on making resolutions. I used to believe in them. Indeed, I used to make and achieve them, but no longer, particularly due to the widely held belief that resolutions are only meant for January.  I am a Coach and my currency is goal-setting. To me, a goal is more defined, definite and incentivising. I believe that with the right mindset, careful planning and with enough support, we in the health community can set and achieve our goals.  I've split this topic into two blogposts, with the likelihood in mind that you may not have the remotest interest in the goals I have set myself . So, welcome to Part 1; this one's about you; espcially directed at those for whom their disability or health condition is a little more intrusive than for others. On Twitter, I recently spoke about the New Year being an odd time. Not only is the end of a year a natural time to reflect - usually a really great thing to do - but it may ...

Photo credit: University of Aberdeen Last week, I had an MRI scan. I've probably had no more than six or seven over the years, but I feel I know the 'drill'. I  know what to expect and what to do, even if the last scan was over a year ago. Here are some thoughts: What is an MRI? I'll pretend not to bore you with the science (the truth is, I really don't know it!), but I will tell you what to expect. The scanner is a long machine with a table protruding from it. It makes ridiculously big sounds, which vibrate around you, but there is nothing intrusive about it and it's over sooner than you think. What happens before an MRI? You're given a questionnaire to complete asking you about any surgery you  might have had or any health issues that might impact the scans, e.g. did you swallow metal as a child, that kind of thing (only kidding). The radiographer will go through the form with you and ask if you're wearing any metal. You're likely to ...

When you're newly-diagnosed, it's a lot to take in. But, if you're like me, you'll want to research the hell out of it! So here are some reputable websites that I've found useful for certain things. This is NOT an exhaustive list but they have been helpful to me. You'll likely have your own that you can add to this list. Newly-diagnosed MS Trust The MS Trust have a great webpage for newly-diagnosed people , divided into some critical areas. If you sign up to to their Facebook page, you can get the latest research data that's in a quick, digestible format. Ms Society The MS Society has a brilliant helpline to deal with all kinds of issues. There is also a really supportive community via the forums and via local groups. I use/d this mainly for better understanding my symptoms and for the online forums. Both of these websites have a variety of free publications. Printed copies are usually available in the hospital waiting rooms when you go for your...