My MS Bully and Me

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...

Children are amazing for lots of reasons but more so because they always surprise you with how resilient they are. I had my child after my MS diagnosis.. I decided quite early on to tell my child, not in an overly grand, dramatic way but to covertly slide it into conversation when he was old enough to listen, which in my case, was when he was about five years old. I wrote last week about how you tell your child, but it really depends on the maturity of the child. I didn't come out right away and say "Okay, little Jimmy, I have MS!" No, I decided to slip it into conversation with things like "Mummy can't find the words, silly MS brain!" "Mummy's hand has gone all tingly, silly MS hand!" When he was six, I took him to an excellent workshop in London for families where at least one parent has MS and the children quite young (see the brilliant Digesting Science ). He was just on the cusp of eligibility but as he went through the activities,...

Having a child is by far the best thing that has ever happened to me. It's the most rewarding, exhilarating, heart-stopping, exhausting and amazing job there is. However, like most parents, I feel guilt from time to time: working and not spending enough time with them, having to put work first instead of going to Sports Day to or a special school assembly, not being on top of all of the school goings-on. All this stuff is normal; it's what every working parent goes through. However, if you have a chronic condition, parenting becomes a little bit stickier to get through. Here are a few things I've learned and hopefully they will be helpful for other parents with similar conditions. Energy We don't have any. So rather than beating ourselves up about not being able to take our children to the park after school, or remembering their snack every day, let's be realistic on low energy days. Get your child to help out with the cleaning or cooking - small ones especial...

When you're newly-diagnosed, it's a lot to take in. But, if you're like me, you'll want to research the hell out of it! So here are some reputable websites that I've found useful for certain things. This is NOT an exhaustive list but they have been helpful to me. You'll likely have your own that you can add to this list. Newly-diagnosed MS Trust The MS Trust have a great webpage for newly-diagnosed people , divided into some critical areas. If you sign up to to their Facebook page, you can get the latest research data that's in a quick, digestible format. Ms Society The MS Society has a brilliant helpline to deal with all kinds of issues. There is also a really supportive community via the forums and via local groups. I use/d this mainly for better understanding my symptoms and for the online forums. Both of these websites have a variety of free publications. Printed copies are usually available in the hospital waiting rooms when you go for your...

As I explained in an earlier blog, my bully and I live together by sharing a body. I didn't choose it, it chose me and only me (I'm the MS chosen one in my family). I may not always be able to keep my bully at bay physically, however I feel like I fight it in other ways. One of those ways is through writing this blog. I find writing hugely rewarding but I'm also hoping to reach people, lots of them, with it. I've written a couple of blogs before, but the below is one I wrote for the MS Trust that got rather a lot of views and shares via Facebook: My Diagnosis Story . Over the last couple of years, I have been asked to speak at a few conferences as a 'patient expert.' I've spoken to newly-diagnosed MSers, neuroscientists and junior doctors. I find this enabling. I think this is because I have a voice and that's something my bully won't take away from me. I've been on top of as much of the latest news I can, whether that's online or att...

Over the years, I have learned a lot about my MS and, in the process, about myself. I have learned that I can deal with challenges and, sometimes, adversity, and I have learned that I am actually a very resilient person. This turn of phrase makes me sound surprised but, you see, I'd never really thought about it until recently when I dealt health issues in parallel. I thought I'd share what I have learned in the hope that it helps someone. Tenacity and Curiosity (with a capital 'C')  These days, I find it hard to give up. I think this is partly because I am older and feel like I can no longer fritter away time. I also think it's because I have a renewed curiosity (frankly, I'm a bit nosey!), which suits my career as a Coach. However, I also know when to let go, when the input of energy required outweighs my need for an outcome. Externally, this looks like I'm giving up, but I'm making a conscious decision to put my precious energy elsewhere (see ...

I'm going to leave disclosure to its own, future blog post but in the meantime, I thought I would share what has worked for me and helped me be effective at work. Working Pattern & Hours I work on Monday, Wednesday and Friday, so there is always a day in between to allow me to live at my own pace. An unusual pattern, it also means the business doesn't have to wait for me for more than a day. I work more effectively in the mornings, so whilst I don't work reduced hours, I do move them up to start earlier than everyone else. This also means I miss rush hour - no pain, no stress. Memory If, like me, you have the world's worst memory, you'll be the sort of person that makes notes. So it will come as no surprise to you that I use multiple media to support my memory: Personal organiser - I'm fastidious about putting entries in one place, in one calendar and I feel it's important to separate work from home so this is just for home (might be different if...

I'm going to be up front - I'm not telling you this to glean sympathy. Indeed, if anything, I'm showing you how a person can adapt to something they didn't count on and make life look fairly seamless. I'd like to raise awareness that someone with a  chronic condition has to think this hard on a daily basis - using complex means - to look like everyone else. I must admit that I personally don't know a single person who does this, but due to the beauty of participating in online forums, I know that I am not alone. So, here's a glimpse into my week: 1. I spend some of the weekend dividing up medication and vitamin supplements into miniscule pill boxes for the week ahead. 2. I take ridiculous amounts of medication, at specific times of the day so they don't conflict with each other - avoiding alcohol for most of the day so it doesn't conflict with my stomach! (let's not go there) 3. As a heat-sensitive MSer, I sometimes lie down after a showe...

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 ...