Numerous runners, family, friends have asked me to share my story of dealing with Lyme Disease. I’ve initially been reticent for a number of reasons, not least it being so very personal, a mental and physical battle. Mostly that it might come across as ‘woe is me’ and that’s not the kind of person I am or strive to be.
But persuade they did. I hope this helps family, friends, colleagues and those in my wider professional and running network understand the complexities of recovery.
More than anything, that it provides some useful insight and potentially comfort for anyone else with Lyme Disease or chronic illness.
So how did this all start? Well I’d always been very active, both physically and professionally. I’d run my own business for almost 7 years, switched career, got to 2/3 of the way through a part time PhD, joined a running club, bought my first new road bike… However I noticed that I had started to become ill on a cyclical basis. Having very rarely ever had time off with illness through my career, my periods of struggling into work began to take their toll. My system eventually completely crashed in May 2013.
It was only then and through having to provide my GP with the details that I was able to look back and identify the pattern of symptoms. Over a period of 15-18 months, I’d been going through cycles of feeling very rough indeed every 12 weeks or so. And I’m not just talking ‘man flu’ here, it was a genuine struggle to do anything. Thankfully I love my job so I was able to cope with the positive pressure that puts on me. The most noticeable symptom was that every 6 weeks I’d get these superficial nodules in my armpits and occasionally near my pubic area (nice!). For a long time I’d assumed these were spider bites or something but in hindsight I was able to identify that they appeared every 6 weeks almost to the day! That’s when I knew there was something more to this.
Progressively it got worse and two key incidents made this obvious to me:
(i) On the day of a relay with the Harriers, I woke to find my legs feeling like lead. I put this down to pre-race nerves. However during the run I was slightly slower than I’d expected to be and was genuinely drained on getting home – thanks to Chris, Jack, Nick we finished 3rd;
(ii) A week or so later I almost passed out having completed a relatively straightforward 5km race. I’ve never fainted before and intuitively felt something was wrong.
Very early June that was it…I became bed-ridden for initially 10 days and slept almost constantly for 3 days. Family were obviously very worried. They made me drink fluids and eat what I could. Despite this I lost almost 14lbs (6.5kg) within 3 weeks! (Remember I’d been very healthy so didn’t really have much spare fat – well okay a little bit!)
These are some of the main symptoms – which you can see are complex and varied:
Physical:
* Extreme fatigue
* Intense headaches – particularly frontal
* Joint pain
* Muscle pain
* Kidney pain
* Nodules on skin
* Chest rash cyclically
* Waxy skin complexion and occasionally grey tone
* Floaters (in the eyes!)
* Immune system very low indeed. Susceptible to almost any ailment – typically manifests itself with flaring up of my own symptoms.
* Totally unable to control body temperature
* Night sweats
* Sleep very fractured sleep now since June 2013
* Then excessive night time sleep
* Excessive bladder usage – e.g. urinating up to 4x a night
* Mixed bowel movements – seems to be regularly, then 3-4 times p/day
* Occasional loss of libido [ho hum]
* Sore feet (soles)
Neurological:
* Confusion / difficulty finding words and communicating
* Speech errors & wrong words, e.g. ‘more the better’: rather than ‘more the merrier’ [confused with ‘sooner the better’]
* Forgetfulness (attention, short term)
* Severe anxiety – something I’d never suffered from at all.
Below is the mapping of the stages I’d been through, in order to help my GP and a Lyme Disease specialist make sense of what was going on. For anyone dealing with chronic illness I’d recommend doing this. Helps clarify things for you, those close to you and any medical professional you may see.
The Battle with the Medical Profession
My major problem was that I didn’t remember being bitten by a tick – apparently between 50-60% of Lyme Disease sufferers are the same. Neither did I have the classic ‘bullseye rash’ that can be a key early indicator. Basically if not identified quickly you are at risk of the disease taking a real hold in your system rather than being able to be treated and rid of it within 4 weeks maximum. Ticks can be so small they’re notoriously difficult to spot.
This fantastic “Ticks” video re. Lyme Disease by the British Mountaineering Council explains a lot.
Luckily my GP was absolutely brilliant. Always open-minded and genuinely listening to what I explained to him. Totally understood my concerns at every step of the way. I consider myself incredibly fortunate in this respect and later sent a letter to him and the practice thanking them for their continued high level of care.
With in excess of 20 blood tests, x-rays, scans etc. I was tested for everything, from minor ailments to life-threatening conditions. Luckily nothing concrete showed up. Yet the perverse paradox was that I was desperate for them to find something so I’d know for definite what I was dealing with. I sincerely hope that doesn’t offend anyone who has been diagnosed with a serious condition.
Sadly I couldn’t be as positive about the infectious diseases specialist team I saw. The registrar proceeded to work through a very prescriptive form to discover my symptoms – dismissively waving away my offer to show her the above mapping of symptoms. Crucially, she refused to believe that Lyme Disease was a risk in the UK! Myself and relatives found this astounding given the research we had done online (and I was fully aware of the risks of internet diagnosis). Both the registrar and consultant I was later to see made major errors in noting my symptoms. Worst of all, they suggested this was all viral and that I was to come off the medication. Working with the GP I was to prove this to be incorrect. We also think it very likely I was bitten by a tick when running off-road in the Lakes, Finland or the Med. So it’s often insect repellent and/or running tights now!
I was in a situation of being prescribed medication based on Lyme Disease, with my full understanding that I hadn’t been 100% diagnosed with this. The one thing we did know for certain was that I was responding positively to Doxycycline of 200Mg 2x/day.
On finding a Lyme Disease specialist, he reassured me that is was definitely not viral, nor was it in my mind. He had the confidence to ask me to “tell your story” and listened intently. He explained how difficult Lyme Disease is to diagnose – as experienced by many sufferers including Avril Lavigne recently. For example, in my case the Elisa test results suggested Lyme Disease yet the Lyme immunoblot was not conclusive. Ultimately he recommended I continue with my antibiotic treatments and seek holistic therapies such as Kinesiology and Reiki. Anything that would help body recover and potentially reboot my immune system.
On the recommendation of a very dear friend – herself suffering with chronic illness – I saw a Kinesiology practitioner, Julie Elder of Totally Holistic Health. As well as helping immensely with physical symptoms, she taught me a lot about diet which, although very healthy anyway, could further benefit from more raw food and less refined ingredients. Hence ultimately my mix of food and running on this blog!
A Battle of the Mind
Work were absolutely brilliant, putting no pressure on me – in fact actively seeking to take it off. However, anxiety was the devil on my shoulder. I eventually returned to work late August 2013 and was extremely apprehensive for no rational reason. It was also a huge physical effort to walk about 300 metres to the building from where I’d parked. For someone active all his life this was very hard to take.
So it was a case of very supportive colleagues and encouraging me to “just do what you can”. A key lesson I’d pass onto anyone is to openly communicate with key colleagues. If you’re lucky like I was/am, they will support you. I’m proud to say I did not miss any key work commitments since returning – and still haven’t.
By early 2014, my GP had diagnosed me with depression, triggered by the chronic illness. He reassured me he’d have been very surprised had I not been depressed such was the extent of my chronic illness. Treatment for this was the lowest dose of Fluoxetine. Despite everything I knew and understood about depression, I still felt a sense of shame. It’s still something I’ve only discussed with a handful of people. We really ought to reconfigure how this is perceived. For me, the brain is an organ so it would help to start calling conditions of this nature “brain illness” rather than “mental illness” and the various negative connotations that has.
Thankfully I’ve been able to deal with the anxiety no matter how severe. On one memorable – and in a way funny – occasion, I had an incredibly strong urge to bolt out of work! On my way to delivering a presentation the devil on my shoulder was telling me “You’re crap! You can’t do this, just run!” Thankfully I resisted the urge and smiled on entering the room and continued apparently as normal 
It was very tough too not being able to train with club members. A scouser, I’d been heartily adopted by Rochdale Harriers So for the 12-15 months I couldn’t exercise, it was of immense help to just go down, watch training sessions and chat to people. Without that network I’m convinced I may not have returned to running.
Lastly, I found myself questioning everything… am I imagining this? Are those close to me frustrated? Do people believe me?
Giving very mixed messages
Now massively improved thanks to continued use of very strong antibiotics, things continue to be on an upward trajectory overall. This is why I’m acutely aware of giving very mixed signals to people. Like so many of us, I’ll smile and try to be positive, even if inside physically/brain-wise I’m feeling like absolute shit. In total I’ve been living the vast majority of nearly 700 days feeling like I have genuine flu. However I’ve learned to ignore it in many respects. Improvement is not linear, it’s very much up and down from one day or week to the next.
I’m very conscious of giving mixed messages. Family, friends, colleagues increasingly see me as getting better which is brilliant. Particularly when they see pics and stories of me #trailrunning the likes of Hawkshead, Staveley, Coniston etc.
I learned to enjoy running and any form of exercise for what it is – an opportunity to feel alive… the wind in your hair, the rain on your face… Running in particular seems to clear my head by allowing me to just be in the moment – cheesy as that sounds! The first time back was a very simple 1km run. I’ll never forget the joy of just trotting along outside for the first time in about 15 months, some light rain on my face and massive smile
Anything involving full concentration continues to take it’s toll on me. So PhD reading and writing has had to go on hold for almost 2 years now! Previously earmarked for promotion on several occasions this has had a direct impact on my career. But I know that won’t be forever and I’ll deal with what I can control.
I regularly deal with internal conflict. E.g. feeling good, then feeling awful; promotion being extremely important one day, far less so the next; content not to study, frustrated at my inability to complete PhD, active one week, not the next. For this I’ve found The Chimp Paradox by Steve Peters invaluable.
I know dips are inevitable and will continue to be so for up to another 2 years – possibly permanently. Medication is likely to continue for at least another 3 months, taking it to over 24 months in total and incorporating my imminent consultation with a specialist in Belgium early July 2015.
Taking the Positives from all of this
✓ All of this has helped me even more acutely recognise how important it is to live life and grasp it with both hands. Family and friends have done everything they can, either being a sounding board, listening to my [ahem] occasional whinging, cookery suggestions etc.
✓ I know people care about me and trust they know that is mutual. My network is not huge but it’s quality. For example, Ben ran Hawkshead and encouraged me constantly. For that I was eternally grateful!
✓ Running club mates have been an absolute inspiration to me. From those who simply encouraged me back, to those that accomplished amazing things, plus others who have cajoled me along during training or a race – you all know who you are Interviewees on this RunEatRepeat.co.uk blog have incredible tales of their own to tell.
✓ Close family, friends, people I interact with every day through my work – all continue to be a source of energy and inspiration.
✓ I’ve learned not to be so hard on myself – something so many of us are guilty of.
This has not beaten me and will not beat you!
So that appears to be the end of this unedited story. Apologies for any waffle and the length of my diatribe.
If you are struggling with Lyme Disease – either suspected or diagnosed, these pages may help:
As I said at the very beginning, I hope this helps anyone who may be suffering with any chronic illness. Take each day at a time and don’t be too hard on yourself
UK athlete Robbie Britton made a great leap forward with his World Bronze medal at the IAU 24 hour World Champs. In this interview, the Profeet Ambassador talks about his love of running, what drives him and offers tips to any runner – experienced or aspiring.
How did you get into running?
Back in 2009 a friend of mine signed up for a marathon, the Windermere Marathon, I signed up as well just to shut him up a bit. After that it just spiralled out of control. London to Brighton was next, it started in my home town and finished by the beach so seemed like a great idea.
Beforehand I just played team sports, mainly football, some rugby (as a front row forward) and American Football. I was never that good at any of them but made up for that by running around a lot.
When did you realise that Ultras were the events for you?
The further I ran, the closer to the front I got and everyone loves doing well at something? Right? I just wanted to find out how far I could push myself, picking longer and tougher races just to see if anything could grind me to a halt or destroy me. I quite enjoyed the 100 mile plus events, those seem to suit my warped sense of humour.
What mileage do you run and what kind terrain do you like best?
I prefer not to think about mileage and look at time instead, probably getting 10-14 hours of training in a week, ranging from 30 minute easy runs up to a 2-3 hour long run at the weekend. I’m not a fan of really long runs, I think it tires you out too much and you can’t get the consistency that’s important.
As for terrain, I’ll run on trail as much as possible, although I do love a track session once a week to unleash some real pace. Chamonix has a nice 300m track where you can pretend you are David Rudisha running WR pace laps whilst looking at a glacier.
Can you describe your favourite ever run?
Up until recently that would have been a difficult question but having won an Individual Bronze and Team Gold at the World & European 24hr Running Champs in Turin with a 261km (162 mile) effort tops everything. The last hour, averaging sub 3 hour marathon pace, overtaking and gaining on those in front of me, felt awesome. Really awesome. It gave me the belief that I can win the event in the future.
Many people see you as a positive role model after speaking out the damage of drugs in sport. What do you feel your recent podium protest at Turin 24-hour has achieved in relation to this?
I didn’t want to detract from the awesome ultra running team we had travelling to Turin but I was happy that it got people talking. People make mistakes, we are only human. I would rather look at what caused someone to take that path and how we can prevent this happening in the future than pour scorn on those that have gone array. Companies like Nike should be leading the way for clean sport instead of championing people who took shortcuts.
2015 is a pretty full on year for you with the UTMB is you main focus. Where and when do you think Byron Powell (iRunFar.com) will have to interview you?
Haha, I have no idea when that will happen or what I have to do. I think Bryon’s a bit worried that after that interview it’s all going downhill for him, nothing will be as much fun. So he’s playing hard to get, but I’ll get him.
How important is rest for runners?
Rest is one of the most important part of a runner’s lifestyle. I firmly believe that you don’t over-train, you just under-rest. If I’m not training I’m thinking about rest and recovery, which includes nutrition.
Nobody gets stronger by running up a hill, it’s afterwards, when your body adapts and recovers, that you become a better runner.
Where do you draw your inspiration from?
From so many places and not necessarily sport. Anyone who works hard towards a goal, makes it their main objective in life, is someone you can learn from.
When I’ve got my head buried in a book it can range from mountaineers and polar explorers to cyclists, runners and any other sportsmen or women. Not only can these people inspire you but you can learn from them. Ultra running has a history that many don’t know much about but it’s there to read about so I want to learn as much as I can from that, from the marginal gains attitude in cycling, the resilience & endurance of polar explorers to the lightweight, revolutionary ways of Alpinists and Big Wall climbers.
If you think you’re tough doing an ultra marathon then read about Walter Bonatti, Doug Scott or Cherry Apsley-Garrard, they were/are tough bastards. Doug Scott crawled off the Ogre for days with two broken ankles.
How do you get through the highs and lows of ultra running?
Expect them and enjoy them. Anyone can run well when they’re feeling great but to make solid ground when you feel shit is how you out together a great ultra running performance.
The highs also have to be watched, fly too hard too early in the race and your body will suffer later on. I pushed too hard about 130km into UTMB last year, thinking “there’s only 38km of mountains left” and I paid the price quite soon afterwards, stumbling up to Tete aux Vents and crawling across a boulder field.
What tips would you pass on to fellow runners?
Enjoy what you do, but not just the races, the whole process. Training is a wonderful thing and driving hard in a hill session, at night in the rain, can be a brilliant moment if you think about the benefits you’re getting.
Get to a start line feeling fresh, rest more and don’t get obsessed with mileage. There is only so much your body can take, build it up year on year and look at how you’ve improved and not how much less mileage you’re doing than Winston on Strava or Facebook. Winston is a liar, picks less competitive races to get his V90 wins and will blame “last week’s 50 training miles” when you cruise past him.
What’s the best running advice you’ve ever been given?
“It was impossible, then I did it, so it was possible” is something I paraphrased from Walter Bonatti’s Mountains of my Life. Don’t let anyone tell you something is impossible, just figure out the first step and take it. I have plans that many would say are impossible, but I’m moving in the right direction and getting closer to my objectives. Just believe in yourself.
What has the running community given you?
The ultra running community is one of the best bits about this sport, it wouldn’t exist without it. The stacks of volunteers at races prove this and we can’t lose that part of ultra running.
When I started it was trial and error for everything, I just went running, but because everyone is against the course first, then each other, you learn an awful lot from the people you run with. Even at the World 24hr Champs in April, Oliver Leu, one of the German team and a very experienced ultra runner, was giving me advice during the race and it is just one example of the great friends I have made through ultra running.
What would you say to anyone thinking about taking up jogging/running?
Just get out and try, walk if you have to but give it a go. Run for a minute and walk for two if you have to but put those feet on in front of the other and go for it. My first running shoes costs £12 from Aldi but it has changed my life for the better.
Join a club, find a park run or just hit the streets on your own. You won’t regret it.
You seem very relaxed, where does that steely competitiveness come from?
I’m very relaxed and chilled most of the time, it’s the best way to live life. Keeping happy is a big concern of mine. As for the competitiveness, I absolutely love to race and compete with other people. I’ve been involved with sport from a young age and have always given everything so I guess it comes from that. My Dad was a competitive fisherman but I don’t think that’s it.
I will say that even though I come across as very chilled on race day I’ve done everything I can to defeat my opponents. What’s more demoralising than getting encouragement from the chap breezing past you? 
What is your favourite race food and why?
I’ve been enjoying making my own food, such as rice cakes with cashew butter and jam. Or sweet potato brownies – but Mr. Paul Navesey usually makes them! They really help with slow release energy that is easy to eat and digest mid race. Also Sour Skittles are awesome, but I am a giant child in that respect. Sweets are my main weakness, but that’s better than my old vices…
Robbie’s in good company here with his love of rice cakes – this is the Team Sky rice cake recipe. Here’s a great sweet potato brownie recipe too. I’ll be giving both of these a go For other fuel food click here.
Thanks very much Robbie. Good luck with the rest of your season and “go easy now”