Lyme Hero of the Week

I don’t often share on what living with Lyme can be like partially because I feel like there are so many people who have it way worse than I do and because I simply don’t like dwelling on it.

But I thought I’d make an exception today. As I have shared previously, when I get fatigued I tend to forget words, names and sometimes whole conversations. And today is one such day. I’ll be honest, I am TIRED! Perhaps it’s because I’m juggling packing and coordinating moving house, whilst holding down a full time job, and training and managing all the admin for the expedition, which leaves me with precious little time for anything else. This word loss and Alzheimer like forgetfulness really scares me. I wonder, will it ever go away for good?! Will we find a cure or vaccination for this evil disease so others don’t suffer as much?! As anyone with high functioning and hidden anxiety knows, these questions are a slippery slope into the abyss. But in the midst of all this anxiety I pause to remind myself where I was 2 years ago and note how much I’ve improved, which makes me feel a bit better. 

And then I remember that I am not fighting this battle alone; there are so many others who are also raising awareness and campaigning for proper and timely diagnosis and treatment to be more readily available. People like Mr John Cauldwell - my Lyme hero of the week. Mr Cauldwell and his family all contracted Lyme and know first hand of the many complexities that it adds to daily life. So he’s decided to pledge £1 million if his own money if the NHS will match his offer and begin to invest in treatment options, diagnosis and research on Lyme in the UK. So can I encourage you to take a few minutes to support this amazing cause? You can do this by simply following the link below and sending a copy of the template e-mail to your local MP. 

https://caudwelllyme.com/support-your-loved-ones-in-the-caudwell-lobby-for-lyme-research-funding-email-campaign/

I am literally sick and tired of this disease and I truly believe that the best way to end all of the unnecessary suffering associated with Lyme Disease is to work together to find a viable solution.

Lessons Learnt

A little over a year ago a new policy of ‘near miss’ and ‘lessons learnt’ reporting was introduced at work. If I’m honest, at first I thought it was all a bit ridiculous and that it would become a time wasting exercise. But as time has passed I have grown to appreciate the valuable lessons learnt from other’s behaviours and have generally improved my safety awareness. 

 A few weeks ago we had winter storm aptly named ‘The Beast from the East’ here in London with temperatures plummeting well below freezing and a permanent snow blanket covering the ground. The city was transformed into a beautiful winter wonderland, although I’m not sure many commuters would agree. I was excited to be going our in perfect Antarctic training weather for my Rollerski lessons and I made sure to layer up before venturing out. Rather than using moisture wicking base layers I used thermal moisture absorbing ones that aren’t meant for sport. This meant that I was nice and toasty when I stood still but as soon as the class started I was sweating buckets. By the end of the session, I was drenched in sweat and still had to travel 1 hour back home in my wet clothes, as there was nowhere open where I could change. Needless to say I caught a dreadful cold, which compromised my immunity and brought on a 2 week Lyme-induced fatigue relapse.

 Anyone who has suffered from Lyme’s disease will testify to the sheer dread one develops at the prospect of being knocked out by one of these fatigue episodes. Life as you know it ceases, and you have no idea when you’ll regain any normalcy or your energy. I remember days when I would sleep for about 16 – 18 hours, and was mostly too tired to even bother to eat. So the thought of having to go through all of that again was absolutely horrible and began to doubt whether I’d be able to go through with the expedition. Thankfully my body is strong and I was able to bounce back in 2 weeks.

I learnt some really valuable lessons from the whole episode.

Firstly, getting my base layers right is of utmost importance. Moisture wicking is of the essence and I’ll definitely be stripping off any excess outer layers in the Antarctic if I need to. I don’t want to be known as the girl that had to call off her expedition just because of some sweat.

Secondly, diet and rest are crucial. In the weeks leading up to becoming ill I had become a little too relaxed in monitoring what I was eating and was consuming too many treats and processed foods as well as more alcohol than I am used to. I had also been neglecting my body’s cries for rest and had been burning the candle at both ends.

 It’s funny that it wasn’t one major thing that caused me to get ill but an accumulation of little things that I chose to ignore along the way.  As a society, we have underestimated the power of rest and taking time to care for our bodies and have embraced mantras such as “work hard, play harder” and “I’ll sleep when I’m dead” for far too long. Whilst I believe that applying dedication and discipline to all one does are of utmost importance, living with Lyme has taught me to bring balance to all that I do and not be ashamed or scared of taking some time out to rest. So I would like to encourage you to take some time for yourself this week and allow yourself to enjoy some well-deserved rest. It doesn’t have to be anything radical, it can be as simple as taking a short quiet walk; or going to bed 15 minutes earlier to start on that book you’ve been meaning to read; or maybe just reclaiming your lunch break and getting away from your desk for a bit. Whatever you choose to do, let this be a week of introducing a little rest and balance back into your life…your body will thank you for it!