This week is MS Awareness week. Every day people with Multiple Sclerosis do as much as they can to move forward despite the challenges they face. It’s such a wide ranging illness in terms of the extremity of symptoms and limitations on even basic everyday tasks but the core battle remains the same for whoever suffers. When you live with Multiple Sclerosis, things are just that little bit harder all the time, even blogging.
It’s funny how life works out. If you’d asked me thirty years ago what I thought life would be like now, it would have been a very different picture.
I was diagnosed with relapsing and remitting Multiple Sclerosis in my twenties and since then, even though I didn’t want it to rule my life, it has had a massive impact and life with MS has in many ways proved more challenging than I thought.
At the time of diagnosis, I was working as cabin crew for a major UK airline and although I ploughed on valiantly as long as I could, eventually I had to admit defeat. Relapse after relapse meant that I was not able to work and this had massive financial consequences as I had a basic wage topped up with allowances depending on flights. No flights= reduced income. So effectively, I was grounded. I did consider staying in the airline in another post but this proved impractical commuting wise so nutcase here, for some unknown reason, decided to embark on a career in teaching. In hindsight, not perhaps the best job for someone with MS due to workload, pressure and stress levels. Don’t get me wrong, I don’t regret making this decision, as I wouldn’t be where I am today without making that choice but I need now to find a way to work from home and that’s part of the reason behind writing my blog. However, that’s easier said than done!
I have to be honest; over the years I have felt a prisoner of the unpredictability of the illness. I heard MS referred to once as ‘my shadow’ and this is a very true. I can be fine one day but then within hours a relapse could strike so it’s always there, lurking in the background. MS fatigue is by far the most debilitating thing for me and it is the symptom, which has the most impact on everyday life. It’s not even just tiredness, it’s like I have been run over by a bus. Even getting out of bed and making a cup of coffee zaps all my energy. I’ve lost count of the days when I’m literally reduced to tears because I just do not have the strength to complete even the simplest of tasks or the essential words that I need fail me with brain fog. Unfortunately, this is just the nature of the beast when you live with MS so I have learnt to accept it and hope others will understand.
In addition, MS cognitive fog is a common symptom of Multiple Sclerosis resulting in poor memory, trouble concentrating, and difficulty learning and retaining new information. It’s the absolute bane of my life when it comes to writing my blog as some days I suffer from awful writers block and really struggle to stay focused. Luckily, where there’s a will, there’s a way and I’m lucky first of all to have such amazing support from family and friends who inspire me to keep going. Runners often talk about ‘breaking through the wall’ and that’s exactly the way it feels at times.
Moving forward, I’m embarking on what is undoubtedly the most exciting chapter of my life yet but being in the media spotlight is no mean feat for anyone, never mind someone with a debilitating illness on this scale. But somehow I’ll be digging that energy and focus out from somewhere and giving these new projects everything I’ve got!
Having MS has made me into the person I am today. I am one tough cookie and am more determined than ever to do as much as I can, when I can and fight to achieve my goals. With a 2018 motto of ‘She who dares wins,’ 2019’s being ‘inspired’, and 2020 patience, please keep watching this space as I will get there eventually even if it’s just that little bit harder. This year’s word- resilience!
You can find out more about Multiple Sclerosis and how you can get involved and raise awareness by taking a look at the MS Society website and the MS Trust website. You can also listen to some truly inspirational stories from those who suffer from MS by clicking on this link.