My MS Bully and Me

  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...

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 ...

This symptom needs a post all of its own. When MSers talk about their MS, invariably at some point of their lives they will be held back by fatigue. According to the International Multiple Sclerosis Federation , the international body bringing together medical professionals, societies and researchers on MS, up to 90% of MSers have fatigue lasting hours, days, even months. In 2012, they released a piece of work conducted with 10,000 MSers across the world.. Considering the range of symptoms and progression in MS, it is perhaps surprising to some that 86% of MSers participating said that fatigue was one of their most troubling symptoms. There is a theory within the chronic condition community involving something called 'boom and bust.' The Investopedia definition of 'boom and bust' is "a process of economic expansion and contraction that occurs repeatedly." An economic term that describes MS fatigue beautifully. I sometimes have moments, even days, where I ...

I get asked this a lot by people who don't have MS and, of course, I'm not expecting them to magically gain an exact insight, but I hope that in my explanations I can at least get them to better understand. Fatigue is a big one but because of this I feel it deserves its own post so I'll leave this one to another time. Cognitive Fog 'Cog fog', as it's known within the community, often acts in conjunction with fatigue. It's a disconnection from the world, a lack of alertness that brings on other symptoms such as issues with word-finding and concentration, and sometimes slurring of words. I sometimes feel like my brain is following but my mouth or hands are catching up. It's one of my most frustrating of symptoms as I know how articulate I can be and I often worry about how others, who may not know I have MS or if they do, may not understand it, perceive me. It's like being drunk without all of the benefits. It's yet another devious remin...

I woke up one wintery October morning having had a largely successful, but particularly stressful, working week. This morning was a little different. I could feel my feet and legs, but some parts had pins and needles, others numbness. After having a mild panic for a few moments, I put this down to a potential infection and continued with my day. Having convinced me to go to a doctor to check this out, my husband joined me for what would be an appointment with a locum who was both dismissive and patronising, and who left me with the words "I can't find anything wrong with you; this is very subjective." She then proceeded to give a dismissive laugh and suggest I see a neurologist in a few months. I will not bore you with the details but after further wranglings, I decided to go to a private doctor (please don't judge me!), where I was prodded and poked via various tests. Just before Christmas 2008, I was given a firm diagnosis. The MRI evidence suggested it was ...