My MS Bully and Me

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...

I've worked with MS since 2008 and when I was diagnosed, I had already been working with an organisation for a year and a half. In this circumstance, in the haze of diagnosis, I felt obliged to call my line manager directly after telling my parents. I didn't have to, I probably shouldn't have. It would have made sense to let the news sink in, but I needed time off and I didn't just want to call in sick. This is tip no 1. Don't feel obliged to tell anyone until you're absolutely ready. This may be hours, weeks, months or even years. Unless you're legally required to, you don't need to disclose. My role was made redundant six months later and I was pregnant six months after that. I decided to take some contract work, knowing that I wanted to take a year for my version of maternity leave. I was quite far into the selection process, for a role I could have performed beautifully whilst asleep, and at the last hurdle they asked me if I had any holidays boo...

Copyright: C King It's Mental Health Awareness Week and I thought I'd spend a little time thinking about MS and emotions. When I reflect upon my MS journey, it is tinged with a little sadness, which is only human after all, given the long journey we have spent together. MS brings about many emotions and depending on the day, MS isn't at all on your radar or it can weigh heavily on your mind. There are many reasons why MS can be such an emotive topic. We don't know what will happen Emotions: confusion, depression, hopelessness No one can really say what will happen in their future, but for someone with MS, this concern is borne out of a very specific piece of knowledge about ourselves, and no one can tell us what will happen with any certainty. Many of us with Relapsing-Remitting MS find the unpredictability of MS difficult to digest. With friends, family colleagues, this hits us twice - both in our dealing with this emotion in ourselves and in others. We...

Photo credit: University of Aberdeen Last week, I had an MRI scan. I've probably had no more than six or seven over the years, but I feel I know the 'drill'. I  know what to expect and what to do, even if the last scan was over a year ago. Here are some thoughts: What is an MRI? I'll pretend not to bore you with the science (the truth is, I really don't know it!), but I will tell you what to expect. The scanner is a long machine with a table protruding from it. It makes ridiculously big sounds, which vibrate around you, but there is nothing intrusive about it and it's over sooner than you think. What happens before an MRI? You're given a questionnaire to complete asking you about any surgery you  might have had or any health issues that might impact the scans, e.g. did you swallow metal as a child, that kind of thing (only kidding). The radiographer will go through the form with you and ask if you're wearing any metal. You're likely to ...

I've previously discussed disclosing in a work context, and I think there's still quite a bit to delve into, however today I'd like to focus on disclosure to friends and family. In many ways, this is a much harder task than disclosing to an employer. Generally, in the latter context you only have to do this once, unless you decide to tell colleagues or change roles. Telling strangers about your MS is a much easier proposition. Telling people close to you can be frightening: in the short moment that you've told someone about your MS, they have formed an opinion, felt several emotions and the fight or flight response may have kicked in. I don't imagine there being any fisticuffs, I don't mean this. It is more that there might be an awkward silence or an uncomfortable air until you're able to reassure and inform them. Over the years, I've found that it's very difficult for family and friends to really see things to the extent that those that see me ...

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...

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...

What my MS bully feels like When most people say they regret their past, they are usually talking about their misspent youth, involving some very drunken tale proudly told at reunions. For those with chronic conditions, when the onset is usually in our prime, we usually mean that we regret not making the most of who we were while we had the chance, and not being that person today. I sometimes wish I'd settled down in my twenties and that I'd had enough time to have an additional child, whilst in a healthier state. I look back at my early thirties as when I had most of my energy, darting around the UK without worrying about energy levels or fatigue creeping into my day. I wish I had had time to prepare myself for my MS bully. I think most people come close to this kind of regret when they reach a certain age; when they look back and compare their current situation with the 'good old days'. I often hear that attitude is everything, that mind c...