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...

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...

Children are amazing for lots of reasons but more so because they always surprise you with how resilient they are. I had my child after my MS diagnosis.. I decided quite early on to tell my child, not in an overly grand, dramatic way but to covertly slide it into conversation when he was old enough to listen, which in my case, was when he was about five years old. I wrote last week about how you tell your child, but it really depends on the maturity of the child. I didn't come out right away and say "Okay, little Jimmy, I have MS!" No, I decided to slip it into conversation with things like "Mummy can't find the words, silly MS brain!" "Mummy's hand has gone all tingly, silly MS hand!" When he was six, I took him to an excellent workshop in London for families where at least one parent has MS and the children quite young (see the brilliant Digesting Science ). He was just on the cusp of eligibility but as he went through the activities,...