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 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 ...

© C King This week is the ten year anniversary of my MS diagnosis. Having a diagnosis anniversary is unlike any other. You don’t celebrate. There are no gifts.  It’s a reminder of how much you’ve lost and how far you’ve come. You remember it with both sadness and hope. For me, it’s been an opportunity to reflect. Of course, I’d be lying if some of this didn’t involve thinking about where I was as a person ten years ago. No fatigue, lots of energy, virtually no pain (other than the relapse confirming diagnosis) and living day to day. I never felt the need to look back and had no concerns about my future. I even wore heels. I was diagnosed two months into my marriage and well into the mindset of having children; not so much a want as it was a need. Even then, I had other parallel health conditions, such as PCOS. Professionally, I was in demand and at the peak of my career; very much an expert in my field.   When you reflect, it’s hard not to revisit the...

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...

When our children are young, we don't always give them the credit they deserve. They notice a lot more than we realise. I suppose this is the reason why we have a lot of 'sugar-lumps,' 'bar stewards' and 'mothers' in our house. As parents with a chronic condition, we worry a little more that our children are missing out not just because we may be working, but also because we're not always able to be the parents we envisaged. Since teenagehood, I've always had an idealised version of what being a mother was all about. However, as a mother now, I've realised that that was never my path to begin with; the idealised version was entirely inflexible. So, how does this all translate into children living alongside someone with a chronic condition? Sometimes, Little Jimmy will say to me 'Oh Mummy, that's your MS brain!' as I stumble through my words. Sometimes, he'll correct me when I fluff up my lines, or finish my sentences when I fi...

Telling children about a health issue agonises most parents who have a chronic condition - when do I tell them? how do I do it? If you are diagnosed when your children are young, there are typically only three outcomes: you can tell them now, when they're older enough to understand the situation or let them find out on their own. As the latter is quite unusual, and presuming they discover the diagnosis at the same time, I'll concentrate on the first two options. Telling them when they're young Pros If you normalise MS, it doesn't feel like something terrible and children seem to accept it very quickly. You can head off any concerns they might have and if they really don't want to talk about it any more, the likelihood is they'll interrupt you and put on a new episode of Peppa pig or Pokémon. This might seem like a rejection, particularly if you've spent all week preparing for the discussion, but it's really important they are allowed time to refle...

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,...

Having a child is by far the best thing that has ever happened to me. It's the most rewarding, exhilarating, heart-stopping, exhausting and amazing job there is. However, like most parents, I feel guilt from time to time: working and not spending enough time with them, having to put work first instead of going to Sports Day to or a special school assembly, not being on top of all of the school goings-on. All this stuff is normal; it's what every working parent goes through. However, if you have a chronic condition, parenting becomes a little bit stickier to get through. Here are a few things I've learned and hopefully they will be helpful for other parents with similar conditions. Energy We don't have any. So rather than beating ourselves up about not being able to take our children to the park after school, or remembering their snack every day, let's be realistic on low energy days. Get your child to help out with the cleaning or cooking - small ones especial...