My MS Bully and Me

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 ...

My Third Leg Credit: C King Last night, I dreamt I was in heels. They say dreams are a clever way to deal with unresolved emotions. I haven't worn heels in a few years, though last year I invested in some boots with a tall heel.  I occasionally get them out and look at them longingly. Just to caveat this, I don't have a boot fetish, it's just that I do miss having the option of wearing heels. Due to my lack of balance, my penchant for falling, and for wandering into people and trees, this is no longer possible. Feeling and being disabled are sometimes separate things. Four years ago, I gave a talk about MS to my department. I remember telling my colleagues that whilst I recognised MS as a disability, I didn't feel disabled. As you can imagine, this different perspective opened a few eyes.  Fast forward a couple of years, when symptoms have crept up in a way they never have before, and I would most definitely identify as disabled. A week ago, I asked my Twitter f...

  Copyright: C King How can having an invisible symptom be useful, I hear you ask. I'm going to start this off by being very clear that I'm not suggesting that being invisible in itself is useful or that those of us with chronic illness are deliberately hiding our symptoms. Nor am I encouraging people not to share their condition with anyone.  On this World MS Day, social media will undoubtedly be flooded by posts about invisible symptoms. Rightly so, as it's important for non-MSers to understand these symptoms, and perhaps for others in chronic illness communities to see the relative similarities and differences in our conditions.  I'd like to do something different, however. I would like to look at when having symptoms that are invisible, may be advantageous. When we're not ready Sometimes, we just aren't ready to show our hand. This is true of lots of situations. As a member of various online forums, I see people who have just started dating someone...

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...

Dear MS Bully, Congrats on grounding me, especially these last few months. You've been working really hard; it's been a humbling experience. However, I just wanted to remind you that you don't know me quite as well as I know you.  You may well try to pull the wool over my eyes with your 'cog fog' and stall me with your fatigue, but I know something you don't. I know me. Which means I will always make an extra effort to be as much of a thorn in your side as you are in mine. I will not yield to your demands unless I really, really have to. And even then, I'll find a way to be wilful - perhaps soak up that Vitamin D that much longer or take my boy to sports camp; perhaps limit your control over me by speaking at events, or may be I'll just keep writing this blog (I have dictation software. so whatevs!). Because of you, I have found a strength and a voice  I didn't know I had. I am pretty confident that I can stay strong through adversity. I am f...

On the last day of MS Awareness Week, I wrote a heartfelt post to friends and family on Facebook. I thought I would share it for those going through this, so you don't feel alone, and to those who don't have MS, so you better understand those of us that do. I recognise MS is confusing and our actions may not always demonstrate all of what's going on below the surface. Hopefully, the post below sheds some light on why: I thought I would share my personal experience of MS, which has been challenging over the last 9 months. Whilst there has been pain in two of my relapses (I've had 4 in 13 years which is amazing), in these last 9 months I have never experienced pain in such intensity and duration, such invasive testing or so much medication. I take 5 sets of meds, which I have to carefully manage. I also have to constantly challenge myself in all of my daily activities to ensure my ridiculous levels of fatigue (see blog below) don't spiral out of control. I don...