Upside Down - Paloma Faith

Lyric - 'Cause I have made it through this far…

Well in these unprecedented and very uncertain times, the directive from PM Boris Johnson came as no surprise and only underlines the position we find ourselves in as we head into the next phase of enduring the impending Covid-19 Tsunami – Yes, it’s not only going to change the months ahead, it’s going to challenge our very existence.

The World as we knew it, has literally been turned ‘Upside Down’ and will never quite be the same again – it’s my prediction and one I’m pretty certain of becoming a reality. Hand on heart, you are probably of the same mind and have been thinking that way for at least a week or so now.

Of course it’s a horrible predicament. We have only just started the twelve-weeks-or-so of cataclysmic times where we will upgrade our mindsets, opinions & emotions to overcome whatever comes our way. 

And what’s coming our way? Well a slow demolition of the lives we’ve built and surrounded ourselves with over the years. Our precarious foundations are being shaken to the core and it will soon become futile to try and patch up the walls we’ve built around us – the ones that define us – the ones that we use to project our worth – the ones that we place so much value to.

The ones that I watched crumble to dust four years ago when I was struck down by Guillian-Barre Syndrome. I wrote at the time about re-building walls back then and it might help you through some times ahead if your world starts to crumble…

It's the beginning of October 2016, less than six months after I developed GBS, and I'm running again. At the end of this month I'll be doing my first marathon back on my feet. Yesterday, I ran 5km and this Sunday I'll be running the Cardiff Half-Marathon. I've still got 24 marathons to go until I reach my goal of 1000, so I'm starting off with the Beachy Head Marathon. If I run as well as walk it, I know I can get around.

Why not? ‘Life's too short’ isn’t it.

If you saw me right now, you wouldn't know I'd been in a wheelchair. I am 100% rocksteady. And I've got no pain when walking. It's like I've been magicked back to me again with a wand. It's really spooky. Some of it must be down to the Prednisolone steroid I've been prescribed, because it’s definitely helped me and I'm feeling loads better.

Part of it I think comes down to me being re-admitted to hospital. At one point I was paralysed from the neck down lying in my own excrement. And when you're in that situation, being able to walk again takes precedence over being able to run marathons or even work again. However, my thinking was, if I can stand… I can walk…  if I can walk… I can run. It was the Cardiff parkrun four weeks ago that was the real breakthrough. It took me 58 minutes to walk and run that 5km, and it yes, it nearly killed me.

Yesterday I ran the whole distance in 39 minutes. And it felt great!

It was the same distance as my old cross-country course at school all those years ago and while 5km is great to run, what I really want to be able to do is be out there clocking up the marathons - doing all the stuff that makes me, well err… be Me.

My wife has been such an amazing support. We're running the Cardiff Half-Marathon together this Sunday. The last time we ran around she was five months pregnant and we were stopping every mile so she could wee. This time though she's going to run around it with me, and although it'll probably take about four hours I don't care. Everyone could go home while I'm still out there running and I'll feel content. I'm not bothered about the time, medal or the t-shirt. I'm just running 13.1 miles around Cardiff, where I live, which is going to feel great.

The most significant day for my recovery was on July 7th. Having been home for five weeks after leaving hospital on May 31st, I'd soon realised that I wasn't really ready to have left hospital. I'd fought my way out of there because it was slowly killing me. Emotionally, I felt like I’d been injected with liquid kryptonite.

It drove me crazy. I'm not an ill person. I never go to the doctors. I'd been fit for 20 years. I don't get injured. I'm Teflon coated. Then to suddenly find myself on a hospital ward surrounded by lots of other ill people was traumatic. I couldn't understand how someone like me could become bed-bound.

  

The first thing you want to do under those circumstances is to escape. So you try your damnedest to get out of the place. But the medical experts there thought I was better in a much better state than I actually was. I simply wasn't well. And I certainly wasn't in any condition to go home.

At that point I could 'sort of' walk with a Zimmer frame. But at that stage, what the doctors are interested in is your functionality. Can you function as a human being? And cynically-speaking, if you are able to function as a human being by yourself with help, then in their eyes you're taking up a hospital bed that someone else might need. It got to the point where they were just administering me drugs, which I could take at home. I had a wife that could look after me at my in-laws home that had a toilet on the ground floor, so I was away. After a further couple of weeks we ventured home to our terraced house in Pembroke Road, Cardiff.

This is where I got even worse. I got to the stage where I couldn't stand up because every time I did I would fall over, I simply didn’t have the strength to hold myself up. The Zimmer frame walking was disastrous, I had in fact become dangerous, especially with a baby crawling around on the floor, and my wife at that time being heavily pregnant. The opportunity for a serious accident was genuinely on the cards, to be honest.

Eventually, my routine became sleeping on the lounge floor at night because I couldn't climb the stairs to bed and then transferring to an armchair in the morning until 5pm, when my bum was literally so numb I couldn’t stand it anymore and needed to lie down again. When I say routine, it was more of a vicious circle. I felt so weak. I simply couldn't stand up. My knees wobbled like Bambi's. They would literally just buckle from underneath me and when I fell, it was like a puppet having it’s strings cut.

  

My ankles were totally useless. Whenever I lifted my knee my foot would drop. My feet were dead, like dead pieces of meat and because there was no strength in my legs at all, nor any strength going into where your hip flexors are at the waist, I had no core strength either. Then to make matters even worse, because GBS affects all the muscles in your body, I couldn’t pee and I was just completely bunged up internally. I was in a real state. So my wife phoned my consultant and explained how much trouble I was in.

He saw me the following Monday and realised that I was really ill again. They admitted me straight back onto the hospital ward, bypassing A&E and the Medical Assessment Unit all together. That was the day when my recovery actually started.

To be back at square one with my recovery felt disastrous and I felt I’d wasted nine weeks getting absolutely nowhere. However that's different from me accepting the scenario I was in: after all I had the GBS for some time, and I now realised that it wasn't something you couldn’t just fight. It was a process.

It made me realise that in fact happiness is a state of mind, no matter what one’s circumstances are. That's when I realised that even if I was going to be forced to be in a wheelchair for the rest of my life, I'd be prepared to make the best of it, because that's the kind of person I am. Being resigned to that thought changed everything mentally for me. Medically another big step took place on the 10th July when I was given the first 100mg dose of the Prednisolone steroid. Talk about immediately feeling like Arnold Schwarzenegger, following another couple of days of being pumped with a further 200mgs, my world had changed - literally.

Suddenly I felt great. I felt 'in the right place'. Three days earlier, on 7th July, I couldn't move at all. I monitor all my steps on my iWatch. And on July 7th, I didn't take one single step. I was in bed all day and didn’t move an inch.

Fast-forward a week and there I was literally standing up and then the next phase of thinking clicked in. Okay, I had some strength back, but how would I go about making enough progress to walk again? My thoughts were how am I going to get myself out of the shit this time. Who was going to help me do all of this hard work? Was it the physiotherapist? the drugs? the doctors, nurses? Or were my family and my friends to do it for me?

  

Nope it was all down to... Me.

How far I could get with my recovery came down to how much time and energy I could put in. That's when I realised that if I could just stand up, I'd be back to feeling somewhere near normal again and if I could stand, I could walk. After all, I'm homo-erectus, like any other human being and it’s instinctual to stand. I’d recently watched my son Jack learn to walk and witnessed him go through the whole process. He hadn’t miraculously just started walking overnight. First he’d pulled himself up, stood holding on to the furniture, then cruised along it and finally taken a few steps before falling flat on his face, narrowly missing injury. It was all too familiar.

With Jack in mind, I decided to spend the whole of the next weekend standing up for as long as possible. The ward I was in, had a physiotherapy gym with a massive plinth that pumped up and down, which meant I could work on my own. So without ado, I got out of bed, into my wheelchair and headed towards the physiotherapy room, quietly letting myself in and got onto the edge of one of the plinth. Pumping it up until I was virtually stood up, I then balanced myself half on my feet, half on the plinth behind me for support. I'd placed the Zimmer frame in front of me for balance and as a safety net.. I then stood and stayed like that while listening on my headphones to a five-minute long song until I was exhausted before sitting back down again.

I did that repeatedly, with my arms growing more and more sore from all the shaking trying to support myself, because my legs just weren’t strong enough. It was super hard exercise and because it was July, I was sweating buckets. It didn’t matter though as I felt my legs were slowly getting stronger. OK my feet were still a bit floppy, and my knees were hyper-extending - they were literally bending back on themselves but I didn’t care. I was standing on my own again and every now and again let go in defiance. The physio’s had got me upright the first time after a couple of months of lying down. It’s the weirdest feeling ever when you haven't been bed bound for so long. It's really weird when you get to your feet and it feels like you’re 10-foot tall. I must have looked pale as the couple of physios whom had got me upright were now looking a bit concerned. ‘Are you feeling ok?’ one asked. I replied, ‘Not really...’

‘Maybe you should sit down...?’

‘Yeah, I think I'd better.’

And it was the right call because after so many months of being sat down, my body just wasn't used to pumping my blood upwards to my brain. But that was part of my initial journey towards walking again. Being strapped into the ‘Pulpit Stand’ was the first part of the rehab process. Being upright and able to look out of the hospital window over the Severn Estuary to Bristol made me think about the world out there waiting for my return. It really spurred me on.

By the end of August, I was ready to leave hospital all together as I was up to walking around 10km a day. In the last week of my hospitalisation, I was allowed to stay overnight at home and then walk to the hospital to do the physio then to walk back later on. I'd have two one-hour physio sessions a day.  The first one was at 9.15am, involving light stretching and just working on my core and leg muscles. Then the afternoon session was more cardio based - either on an exercise bike or walking on a treadmill. Morning was strength, afternoon was fitness a recipe for success.

When I look back, moving from University Hospital of Wales Cardiff to Rookwood Hospital was funny. A couple of St. Johns Ambulance men came to my bedside to shift me and my belongings. One of them said in a broad Welsh accent, ‘OK, if you get into the wheelchair we’ll get going.’ I had different ideas and said, ‘No, I'm going to walk out of here.’  He said a little curtly , ‘It would be better if you just got into the wheelchair’ to which I replied ‘You’re not getting me? I'll get in the wheelchair outside of the ward, but I'm actually going to physically walk out of here, because that is the goal that I've set myself.’ I don't know if he really got what I was talking about, but I walked out of there, that's for sure, head down so I didn’t make eye contact with the nursing staff as I started welling up on leaving Ward C4 behind.

At Rookwood I spent the first week transporting myself around in the wheelchair. It was a bit like going up to big school and I went slightly backwards with my recovery before resetting my weekly Friday goals of being out of the wheelchair, off the Zimmer, onto crutches, then walking poles and eventually walking aid-free; I skipped the walking stick stage entirely because in my mind they're fairly redundant: I think people lean on them, rather than using them to aid walking. And I didn't want to learn how to walk with a lean.

But for me, one of the most important things was not to let myself become institutionalised. Hospitals are incredibly isolating. I could hear the tea-trolley coming from miles away on different wards even, and you begin you build your day around the eight cups of tea they bring you each day. Luckily the WIFI in both hospitals was superfast so I had some access to the outside world and sanity.

I spent a lot of time reprocessing whom I was and what I had done over the last few years. I think it actually gave me some time out, which was really lucky. I also had Euro 2016, Wimbledon and the Olympics to get lost in. As I love all sports, I found it really inspiring. It passed the time very nicely especially with Wales doing so well at the Euros and Murray and Mo doing so well too. Being in hospital took away a lot of my parental responsibilities because literally I wasn't at home to help out. I had a lot of new found spare time that I found really useful.

Not being a big team player really helped too as I didn't get too involved with lots of the other patients and their illnesses if I’m being honest. Chit-Chatting away, eating and sleeping fill up a lot of folks days I found and I didn’t want to waste my new found valuable time of I’m being honest. One thing I did realise is that in hospital, a lot of people don't ask many questions. They don't question the doctors, or the judgement or their doctors, of their treatment. They just seem to take whatever they say for granted. I questioned everything that they did. ‘Why are you doing that? What is this drug for?’ All of that stuff. It probably didn't make me very popular but I wanted to make sure I got the best outcome I could possibly get. Having a ‘Dial-a-Brother’ Doctor on hand proved most useful.

You see when I deliver what I do for my living I try and deliver 100%. I want to be known as world's best. In hospital, I wanted to make sure that I was being treated by the best Doctors I could possibly get. And now the treatment that was eventually prescribed to me has worked. I just wanted the best out of those guys. It’s a harsh environment to try to get better in too, so I wanted to get out of there as soon as I could.

I was in a neurological ward with eight other people - mostly men of sixty-plus years, needing a little psychiatric help as well if I’m being totally honest. One gent was regularly trying to kill himself by ramming his fingers down his own throat and another chap just cried out all night long. At times it was horrendous, a proper Bedlam, in the original sense. Jack Nicholson would have been right at home in his Cuckoo’s Nest.

It meant I needed to take the drug Zopiclone at night. It's a light sleeping drug. If you weren't given it, there's no way you'd be able to sleep each night as you wouldn't stand a chance of dropping off. There was a massive shortage of the drug at UHW – loads of the patients were on it and one nurse carried a packet in her pocket so she could dish out what supply there was left to those that needed it.

The irony is that you're having your will destroyed by existing in that environment, when you're actually critically ill in need of rest. It's a more of a living nightmare. Plus you can't physically get yourself out of bed to go to the toilet because you're too ill so you have to do it with a bedpan. The hospital food is poor and there's no privacy.

The thing is that I never worried about where it was all heading. Maybe it was blind faith. Maybe I just blocked it out. Or maybe it's a skill of blocking out my sense of suffering from all the ultra-marathon running I've done. Maybe suffering is what I'm good at but I knew that if I let my standards slip, it wouldn't get me anywhere. I'd lost 15kg from being ill. My legs had really wasted away. I also couldn't eat because I was bunged up. It was like putting food in a blocked waste disposal unit. To get my weight back up I started drinking protein shakes. And although this next bit will sound horrible, it gives you an insight into how messed up my situation had become.

After many days of getting filled up, I had one day where ten days' worth of food came out. I was FOS according to my Doctor. Code for ‘Full Of Shit’. I was prescribed one huge dose of Picolax to shift it. Two doses taken 6 hours apart and the first one is easy as nothing much happens. Then after six hours you only need one sip, of the second and the world drops out of your bottom.

The problem is, you're in bed and don't have use of your legs because of the GBS so there's nowhere else to do it and you just have to dump it in your bed. The nurses are used to it and they just turn you onto one side so it can all come out. It's also standard in these situations that there's so much of it that you can then no longer roll onto your back. It's like there's a wall behind you afterwards preventing you from rolling back.

But at this point you've now experienced so many indignities that you're not embarrassed by this - you're just feeling relieved. In fact the sense of relief is almost unbelievable. It sounds horrendous, but actually one of their hottest concerns is that you become so blocked up that you vomit faeces, that didn’t sound like a good option to me if I’m being honest.

So yes, that experience was pretty degrading! It was harsh, but at least I wasn't scared like I had been at home when they let me out of hospital the first time. I'd been so worried about my safety on the outside that when I was readmitted again, my only thought was that I’d found Sanctuary!

Back in hospital, I knew I was safe, that I wouldn't hurt myself again. That I wasn't going to accidentally lose my balance and body-slam my family at home. I'd have all the right people right in front of me at hospital to help me out. It was like the medical staff were my team again. They're there to feed me, clean me up and give me the medication I needed. The doctors provided the theory of my fix, the Nurses kept a 24 hour watch over me and the physiotherapists were there to get me moving again.

Meanwhile I had people from the outside world coming to see me: my friends and my wife and children to keep my spirits up. The internet helped too - luckily Jenny and her friends did an enormous amount of online research and gently fed me the relevant information I needed to know so I didn’t get totally freaked out.

I realised that if you included all those connections with the outside world, I was actually out of danger and weirdly being kept alive by total strangers. I was clean, fed, warm, so you're in a pretty good place there, even though bedlam was going on around me, from the other patients. Luckily I could stream live TV and listen in using my noise cancelling headphones, it brought the Olympics and Euro 2016 into the hospital ward and took me out of the din to my own world where I could enjoy a similar solitude I love to be in when I’m running.

This is where I found my epiphany as I realised that while I was healing, I was actually alright with where I was. As time wore on, I realised that my progress was actually further along that most medically trained people thought - and that they were just being over-cautious because they were following health and safety protocols. I realised that if you don't get signed off to get out of bed and go into a wheelchair, everyone at the hospital gets a bit upset. Same with using a Zimmer frame. If they haven't given you permission to use one and you're a bit wobbly on your feet still, they aren't too delighted either.

It's part of the hospital process. During the Doctors’ morning rounds, they marked my progress neurologically, testing out how my nervous system was recovering, with some simple muscle strength tests all over my body marked simply out of five. Five being normal, zero meaning no strength or response at all.

I was scoring getting threes top half but my legs were worryingly zeroes and ones. In fact my legs were so weak that when the doctor lifted up either one of my legs while my eyes were closed, I had no idea what he'd just done. I had no sensation in either of them whatsoever. The more brutal test is where they get a big pin and stick it in your legs to see how much feeling you have in them. You have to describe the feeling you have, from an ouch to an ‘Hmmm, I can't feel that.’ Your pain feels either really sharp or dull.

The problem though for me during this entire period was that I felt like a fraud. Take my time at Rookwood Hospital, for example. It's the national centre in Wales for spinal patients. But they've only got 26 beds. There's a long waiting list for them and they're very hard to get. People who've fallen off motorbikes and horses and have severed spines are undergoing long-term rehab. The priority is to get these people functioning correctly.

And yet there I am, taking one of the beds, walking in and walking back out and around the park every day for physio. I felt like I was using it as a glorified hotel. I certainly didn't feel like a hospital patient. I thought I should be at home. Nevertheless, there was a lady physiotherapist called Ruth who worked on my rehab with me there who was outstanding. She made the therapy very much about getting me back functioning and walking again.

As soon as I could do one thing successfully she was like, ‘Well, let's include you incorporating a heavy medicine ball with that lift. You're going to walk? Well, let's put a band between your legs and make it harder.’ I understood and appreciated her approach from my personal training perspective. The thing is, GBS affects your peripheral nervous system, and your hands and your feet primarily. If your core's rubbish as well, it doesn't matter what your feet and your hands are like. You've got to get your core centred and functioning correctly to get everything else working correctly.

Then, one Friday, I just thought, ‘Today's the day I'm going to take some steps between the parallel bars. I thought: if I could just let go of the rails and walk for a few wobbly steps and then quickly grab the rails again, I might be on my way to actually walking again.

  

So that's what I did.

It felt amazing, like a child must feel suddenly taking his first steps.

Just before I took them I said to myself: listen, it doesn't matter if you only walk four steps and no more - but just walk those four. That's the deal! And that's what I set out to do. But when I did it, my attitude changed. Immediately I thought: right, I'm going to now walk 10 steps tomorrow. And within a few days I was walking 100, aided by the fact that in that time I’d convinced a friend of mine called Chris to take me to the local park. Under the radar, off we went, with my crutches, to Llandaff Fields near to where I live. Here I walked lifting the crutches just an inch off the ground as a safety device, stared at the grass… and walked well over 100 steps! That was when I realised that I was home and dry.

It felt amazing. A real life moment and in private later on, I cried.

July 18^th is Jenny’s birthday. And somehow, it’s always blazing hot on that day every year. So we went for lunch at our favourite pub, ‘The Captain’s Wife’ near Cardiff in Sully. It’s located on the same route that I take all my clients running down and using my Zimmer frame, I walked all the way to that pub and we sat outside.

Four weeks later, I was strong enough to walk the 1.4 miles home from the hospital – without a Zimmer frame. It really was the Evolution of (Cole)Man. In that moment, I knew I’d be at MDS 2017. That act of walking those 1.4 miles unaided by a Zimmer frame said to me: you can do this in eight months.

If I could walk and do the MDS like I did with Ranulph Fiennes when I trained him to do it in spite of his heart condition, and I know I'll finish. In October 2016, I was still in an orthotic brace on my left leg. It was a leg iron that goes under your foot and lifts your toes when you’re walking so you don’t trip over. But soon that was gone as well. And then, like all the other walking aids, I threw that away too.

Next, I started running 10 steps, to see if I could actually do it. And it was so strange. It felt like I had the worst rubbery drunk legs imaginable. But again, it didn’t matter – because now, I could do it.

I decided to test this out with a 500 yard run across Landaff Fields without Chris or the Crutches this time, to see how I’d cope, my thinking being that if I tripped over it’d be a soft landing. I ran all the whole way across the park. But it was slow. Really, awfully slow. But it didn’t matter. I was back. It was all about: being back. And part of being back meant not listening to people telling me to take it easy.

People who say that don’t understand ‘Me’. 

They don’t understand ‘It’ and the real ‘Me’.

I’m not here to go easy, to take the easy road.

I’m here to give it my all.

I’m here to run hard.

Well my world has changed a lot since then and it will change again now as I adapt to a new way of life. I’m going to stay positive and rebuild when the time is right. 

I hope you can too…

1,052 Marathons, 255 Ultras, 9 Guinness World Records & 15 Marathon des Sables