My MS Bully and Me

With Shift MS, I've made a number of videos around disclosing MS and where to get support. This is my next instalment - I hope you find these useful! If someone decides to disclose there MS at work, how can they prepare for that conversation? https://www.youtube.com/watch?v=qkIRupT2JVU&t=3s If you have enjoyed reading my blog and would like to be notified of new posts and information from other organisations, please follow me at https://www.facebook.com/myMSbullyandme

When I think of health disclosure in an employment situation, I think of it in two parts (three if you consider the prep beforehand): the conversation and what happens next.  Before you begin your prep, consider the following: Are you ready? If you're newly-diagnosed, do you need more time to absorb the information? If you're ready to discuss your condition, do you feel confident and if not, what will help you feel ready? The person you are disclosing to is human and may have a human reaction to your news, even if it's not quite what you were expecting. You've lived with this knowledge for a while, they for the last few minutes. What, if any, support do you need to do your job as effectively as you can? What will give you the same fighting chance as others without your condition? Provide reassurance on how you're managing your condition at work. For example, if they are able to make reasonable adjustments, what are you also doing? Are there questions they...

We all have days when we don't feel up to being with the world.  I don't mean a duvet day; that to me is a completely different thing. I'm talking about t hose kinds of days when you don't want to speak to anyone, interact with anyone and just be with yourself. For reasons I'll explain at a later date, I've sent my family on holiday without me, so I'm feeling like I need one of these days today: let's call this a 'Hiding from the World' day. Having a chronic condition, coupled with a Hiding from the World day, is usually linked with a need to be alone and/or a need to slow down, if just for a day. So, what do we do on these sorts of days? 1. Get some wrap around care for the children. If they're at school, all the better; if not, then call in the cavalry. Don't feel guilty; your body is telling you need to be restful today. 2.  Choose one activity you would like to do today. It doesn't have to be from the list below. The ru...

If you're wondering where I've been these last few weeks, I've been watching my energies and being very careful about what I've been devoting these to. Ive been working with Shift.MS and their brilliant MS & Work series. I hope this helps someone out there or at least kicks off some thought-provoking discussion. The Pros & Cons of Disclosure https://youtu.be/8HxIFCk2W20 If you have enjoyed reading my blog and would like to be notified of new posts and information from other organisations, please follow me at https://www.facebook.com/myMSbullyandme

It's thirty-four degrees today. Flies are on their backs, curtains and windows are closed, and those who are braving this insanely hot world are doing so using umbrellas for shade. I literally don't think I've ever been in such a hot climate. We MSers have a really tough time in the heat. We are taking to online forums in our droves, complaining about how unbearable this is and begging others for ideas of how to combat the heat. I currently have more than one tower fan pointed at me while I write this post. I'm also using dictation software as I can barely open my eyes. For many of us, we talk about heat in the same way as we describe fatigue. Both are insidious and there is little to control them. It seems apt, then, that one is a source of the other. If I didn't do the tips I mention below, I wouldn't be able to function and goodness knows, we mums cannot stop. In the past few weeks, I've also been getting increased blurred vision. At first, I though...

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 ...