My MS Bully and Me

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...

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...

I'm going to be up front - I'm not telling you this to glean sympathy. Indeed, if anything, I'm showing you how a person can adapt to something they didn't count on and make life look fairly seamless. I'd like to raise awareness that someone with a  chronic condition has to think this hard on a daily basis - using complex means - to look like everyone else. I must admit that I personally don't know a single person who does this, but due to the beauty of participating in online forums, I know that I am not alone. So, here's a glimpse into my week: 1. I spend some of the weekend dividing up medication and vitamin supplements into miniscule pill boxes for the week ahead. 2. I take ridiculous amounts of medication, at specific times of the day so they don't conflict with each other - avoiding alcohol for most of the day so it doesn't conflict with my stomach! (let's not go there) 3. As a heat-sensitive MSer, I sometimes lie down after a showe...