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 Continuing from Part 1 , I thought I would share this year's goals so that you can see how I have taken the steer given and applied it. However, I'm not going to spell these out in detail, as I'm sure you can read between the lines. 2019 was a transformative year, both in the way I experienced and approached aspects of life that could not be ignored. Time (sometimes brutally) highlighted what was missing, but I mostly realised that my 'voice' was not as much heard or as distinct, as I had hoped. So I would be lying if I said these goals weren't already set.  Goal 1: Return to work  In 2019, I took a career break. Usually, people tend to plan a sabbatical during their careers to do something a bit different, take time out to discover what they want to do next, try things out. Mine was completely unplanned, but I took it to focus on my health and as a way to keep a job I love (creative problem-solver, anyone?). Obviously, I have a st...

Copyright: C King It's January, and I've given up on making resolutions. I used to believe in them. Indeed, I used to make and achieve them, but no longer, particularly due to the widely held belief that resolutions are only meant for January.  I am a Coach and my currency is goal-setting. To me, a goal is more defined, definite and incentivising. I believe that with the right mindset, careful planning and with enough support, we in the health community can set and achieve our goals.  I've split this topic into two blogposts, with the likelihood in mind that you may not have the remotest interest in the goals I have set myself . So, welcome to Part 1; this one's about you; espcially directed at those for whom their disability or health condition is a little more intrusive than for others. On Twitter, I recently spoke about the New Year being an odd time. Not only is the end of a year a natural time to reflect - usually a really great thing to do - but it may ...

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...

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

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 ...

The Equality Act 2010 (UK) says that in order for your health condition to be covered, it must have a long-term and substantial effect on your daily life, which is why those of us with MS are included (even if the impacts aren't obvious to others), as MS is classed as a progressive condition. The Act covers us from the point of contact with an employer to when we're in the workplace. Once you've told someone about your chronic condition, the natural follow-up question would be to look at your needs. Before any conversation around your needs takes place, I really recommend taking time to reflect and to research. Read one of my very first posts about disclosure as background. If you don't know where to start, perhaps these questions might help? Which areas of the role might you struggle with? (be as specific as you can)* What reasonable adjustments do you need? If you've had reasonable adjustments previously in another role or environment, how did they...