My MS Bully and Me

Not so long ago, I was employed in a full-time role which averaged at 53 hours per week. The measures of success that myself and my peers used were about climbing the management ladder and being 'well paid'. I was content with both these things for a while, however they soon came at a price and this prompted a few realisations. Looking back, there were specific milestones that led to my current way of thinking. I decided to become part-time in my last role, due to high levels of fatigue stemming from a weakened immune system caused by pneumonia and a severe deficiency in Vitamin D. The long hours I spent at work also meant I was missing out on early motherhood, all of which meant change was in order. I sought a role which could offer me flexibility whilst still giving masses of reward. But this time, the reward I sought wasn't purely financial. In fact, I reduced significantly in salary in order to do the job I wanted to do. This allowed me the freedom to look at the ...

One of the most annoying things about MS, besides its terrible timing, is that for much of the time you appear completely well to others. I cannot tell you how many times friends, family and colleagues have recently told me how good I look, when I have had the worst period of MS-related symptoms since, well, ever: it's amazing what make up can do! Strangers on the bus or train can't see that your energy is quickly running out at the end of the working day, and that you'll need that seat or you'll be solely responsible for holding up entire train lines. No one sees you grip your painful arm or your stomach while at your desk or in a meeting. Or the rising panic which ensues in your mind when a lift is broken and you're based a few floors up.  A friend recently asked me, "Why don't you tell us what's going on?" This is a valid point. I come from a very corporate background, where either your personal life should not be brought to work, or...

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...

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...

Talking about my MS diagnosis the other day led me to thinking about how confusing my first year was. Not only was I trying to get used to the idea that I had a life long condition, but lots was happening in all areas of my life. A couple of months before my diagnosis, I had just got married. A few months after my diagnosis, I was made redundant from a job I loved. People forget that life goes on, even though when you receive your diagnosis time seems to slow down. You enter a haze, just as you do when you fall or have an accident. I was thinking about what I would tell someone I mentor about being new to this world; I hope it helps you too. It's tempting to read up on your MS. If you're inclined to doing this, stick to reputable sites. By this, I mean ones specifically related to MS, e.g. MS Society, MS Trust, etc. If the above isn't enough, then join online forums. There are lots of forums out there and the majority are really informative. If you start a ...

I'd like to say a huge welcome to any newcomers to this page. Over 3000 people from across the world have read my posts over the last month, and I'm delighted that so many of you have stopped by. If you'd like to keep track of this blog, please feel free to like my Facebook page as I update it fairly regularly. Speak soon! Carla

Sorry for being so quiet lately! This is what I was up to. I was lucky to be invited to write a guest blog for the MS Trust. If you haven't read it, here are my 5 top tips to working with MS . https://www.mstrust.org.uk/news/views-and-comments/work-and-ms-five-top-tips More blogs in MS Awareness week 24th - 30th April. Don't forget to follow me on my Facebook page: @myMSbullyandme

Travelling on public transport with a chronic condition can be off-putting and soul-destroying for many reasons. When you marry the words 'accessibility' and 'travel', many travel operators and media outlets automatically (and seemingly only) associate this with wheelchair access. However, for many passengers with non-visible conditions and disabilities, this isn't the case as we often have some, if reduced, mobility. Our mobility issues tend to centre around how far we can walk, how long we can stand and the fatigue associated with travel which knocks us for six. What does this mean for a mobility-compromised traveller in practical terms? 1. You have to build in longer amounts of time to negotiate all of the inaccessible routes and paths within a station (never mind the other side of your journey). This article mentions time set aside as four times longer for a daily commute than for other commuters. 2. You have to pre-plan your journey to the 'n...

In February 2015, out of nowhere, I began to fall. Not a delicate, Oscar-worthy crumpling to the floor, but an embarrassing, on-all-hands-and-knees, make-a-hole-in-your-trousers, kind of fall. By the third public fall, I had adapted so much that I laughed it off to the bewilderment of strangers around me, dusted myself off and carried on with my day. I had my annual MRI scan in June and everyone around me told me the falls were just due to an infection. I knew, however, that my balance had been 'off' for some time so it was possibly related and, after further investigation, a tiny part of my MRI showed that my cerebellum was affected, disturbing my balance. It took a few weeks to get this confirmation, but the outcome was a recommendation to start on a Disease Modifying Drug, or DMD for short. I was diagnosed in 2008, but had had my first relapse in 2005. However, I can track my MS back to my early twenties. If we go from 2005, say, this meant that by this period of falls I...

It may be that as most of us are diagnosed in our twenties and thirties, MSers don't have too many concerns around studying unless they're either opting for education later in their lives or are diagnosed earlier. Whatever the background, student MSers, this one's for you... I began a postgraduate qualification in September 2016. For anyone studying and working at the same time, it can be challenging but for someone with a disability or a health condition, it can feel more overwhelming and frustrating without the right level of support. According to HESA, in 2016/17, of the 2,317.880 total figure of students studying in the UK, there were 27,9115 (12%) students declared themselves disabled. But that is just those who disclosed their disability to their university. Others choose not to because they fear the stigma associated with a health condition, or they may just not be aware of the support that the university can offer. For years after diagnosis, I didn't ...

Further to my post about fatigue. I was thinking about the things I've learned to do that help me save energy, which are helpful but of which none are rocket science. I'm sure there's a whole heap of things that you do much better than me, so if there is anything you'd like to share, please comment! Do you remember the 'boom and bust' theory (see earlier post re Fatigue)? As someone who experiences this fairly frequently, I need to keep an eye on my energy levels. However, getting the balance right is really difficult. Added to this, sometimes fatigue just nips you unexpectedly. I find the following helpful in countering this; I hope it helps you too. 1. Batch freeze/cook. In my boom periods (mostly weekends), I cook soups, chicken, pasta, just to put in the freezer or refrigerator. This especially helps when I've come home from work, but had a lighter meal at lunchtime and would like to eat something warm and substantial. 2. Slow cook. This re...