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 Continuing from Part 1 , I thought I would share this year's goals so that you can see how I have taken the steer given and applied it. However, I'm not going to spell these out in detail, as I'm sure you can read between the lines. 2019 was a transformative year, both in the way I experienced and approached aspects of life that could not be ignored. Time (sometimes brutally) highlighted what was missing, but I mostly realised that my 'voice' was not as much heard or as distinct, as I had hoped. So I would be lying if I said these goals weren't already set.  Goal 1: Return to work  In 2019, I took a career break. Usually, people tend to plan a sabbatical during their careers to do something a bit different, take time out to discover what they want to do next, try things out. Mine was completely unplanned, but I took it to focus on my health and as a way to keep a job I love (creative problem-solver, anyone?). Obviously, I have a st...

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 ...

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 ...

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...