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Rachel’s Story


It was just a normal Wednesday, at least that’s what I thought!  A quiet anticipation throughout the day for the dreaded training session, speed, that evening at the local running track. I had just joined my local running club some 4 weeks previous, on the back of the Edinburgh Marathon 3 weeks before that. Edinburgh had not gone well, clearly, I was not as fit as I thought!  Sure, why else did the wheels fall off at 19 miles on my 5th marathon, there could be no other possible explanation.

 

Well this Wednesday whilst warming up for the track session to come, I knew something was not quite right.  Warming up I felt dizzy and just a bit off but could not quite put my finger on what was wrong.  Being the stubborn person, I am I chose to largely ignore how I felt and decided to just keep going.  My first 400m was so hard, it was as though someone had sucked the life out of my legs, I was dizzy and somewhat nauseous.  But still I decided to go for my second 400m but this time 100m into it I stood off the track, I just had absolutely nothing in the tank.  A quick chat with my coach and I decided that was me for the night and I went home with a recommendation that I take a few days off and go back running after the weekend.  That was on the 1st of July 2009 and it would take some 3.5 years for me to get any semblance of my running back.

 

My journey from 2009 to the present has quite simply been one of the toughest and loneliest experiences of my life.  It is not a time that I look back on fondly, a mere existence that brought more than its fair share of tears, but those tears, for the most part were reserved for those moments where there were no onlookers to witness my weakness.

 

The weeks and months that followed that infamous evening on the track brought with it a whole host of symptoms; dizziness, nausea, lack of appetite, weakness, migraine, sensitivity to noise and fatigue like I have never experienced in my life.  I quite simply could not understand and apparently the medical community could not or rather did little to understand either.

 

I had test after test from neurology to cardiology with a diagnosis from each that would delight many but brought frustration beyond words for me.  Every test would come back fine and the best advice I was to be given was to accept the fact that I would likely “never run a marathon again” and that perhaps “I should learn how to manage myself better” and with that another file was closed and I would leave somehow with the tale between my legs as if for some reason I was wasting their time.  It is funny, but those two comments have haunted me ever since.  The sheer lack of concern or empathy was simply beyond belief.  At that time, I was struggling to walk for 10 minutes at any one time but still managed to keep working and functioning albeit on a very low level. Simple tasks such having a shower or drying my hair would leave me fatigued for the hours that followed.  I would regularly drive to work in the morning and just have to sit and close my eyes for 15 minutes to build up some reserves for the day ahead.  I became very adept at working from Monday to Friday and just crashed at weekends. Hours spent sleeping on my sofa with such a huge longing to get my life back!

 

I managed to hide for the most part just how unwell I felt. For people who did not know me would have little idea that anything was wrong. But my friends had a unique ability to take one look at me and instantly know whether I was having a good or bad day. If I was particularly quiet they would know I was over tired, the colour drained from my face would indicate that I was weak and always combined with that a dizziness that the only way I could describe was as if sitting in a boat. The constant threat that at some point either my legs would give way or that the dizziness would result in me keeling over.  I had no cast, no limp so how could other people possibly grasp or understand what was wrong. The invisible nature of what I was experiencing made it so difficult for me to even articulate what was going on, but couple that with, what I felt verses what people saw, in my mind sent out some very contradictory messages.

 

It took 3.5 years for me to finally accept that I what I was struggling from was Chronic Fatigue Syndrome.  A diagnosis that I continue to struggle with particularly in light of the complete lack of information, support and validation that I have received from the medical community over the course of my journey. But this is not true of everyone, amazing friends, family and later the complete revelation of finding an actual Chronic Fatigue Specialist across the water in the UK.

 

Chronic Fatigue disseminated to every part of my life, socially I was forced to withdraw somewhat, I tried desperately to keep a grasp on everything but continually found myself having to bow out of many things or try too hard to be part of everything which just had the effect of highlighting my situation to me and I would come home so upset at all the losses I was experiencing.  I desperately wanted to explain to people that the person they encountered was not the real me, not even close, it was like someone had taken a huge part of me and locked it away. I found it hard to tolerate my own company, it was like living in someone else’s body with the real me trying so hard to get out.

 

Jessica, Stacey and the most supportive of friends anyone could ask for, quite simply saved my life.  At last, Jessica and Stacey finally understood, they empathised and treated me as a real person suffering from a legitimate illness.

 

My journey and intervention with Jessica and Stacey was not a simple one.  I would be forced to look at my life beyond sport and face the potential that things may never be what they were, but that did not mean that they would not try their damnedest to restore what I have always possessed and now realise I took completely for granted, my health.

 

My life and my identity was and still is wrapped around sport and the ability to participate.  Before I got Chronic Fatigue Syndrome I was an avid hockey player and a runner with a very simple passion for sport. For 4 years I was forced to be a spectator on the periphery of everything that meant anything to me. To have the one thing that meant so much taken away was beyond cruel and the prospects of not getting that back was something that I truly could not stomach.  Jessica to her credit forced me to look at every aspect of my life to start making changes that would benefit my health, my recovery and at the very least give myself the very best odds that perhaps someday I might begin to feel better.

 

Stacey and later Jaclyn focused on my exercise regime, a very strict programme that required a lot of self-control and management. In order for this to really work for me though I had to hand over some of that control and management to a friend who took as much ownership of my programme as I did.  Over the course of 3 years I had continually attempted to re-introduce exercise into my life but the lack of any guidance and support meant that each time I sabotaged my recovery by trying too hard and overreaching.

 

When I look back, which is very easy with the benefit of hindsight, my Chronic Fatigue did not just come on that night at the track in just one session.  The reality is, that session was the tipping point for me and perhaps had I recognised the signs or rather acknowledged the signs things might have turned out quite differently.  In truth the signs were there well before that night, I had really struggled with my marathon training in the lead up to Edinburgh but most significantly 2 years prior to that I had a very similar episode, with much of the exact same symptoms, but at that time I came around after about 3 months and went straight back into training for a half marathon.

 

Having established my baseline of 6 minutes and finally getting the opportunity to don the runners, I was able to gradually increase my workload. For the first few weeks I was allowed to increase my workload by 1 minute each week provided my body tolerated each increase.  Increases in workload were met with the occasional setback but Jessica and Stacey would always get me back on track.  It took 35 weeks to get up to 4 miles running but this was a massive landmark for me and was possibly the first time I believed that maybe just maybe a comeback was possible.  It took a further 20 weeks to get up to 5 miles having experienced something of a setback as I increased my mileage.  On the 2nd of February 2015 I ran my first race since July 2010. The feeling about 3 weeks prior to actually go online and register was amazing and somewhat scary.  There continued to be such a fine line between success and setback.  My memory of my last event was me having to step off the course not even half way around and resulted in a massive setback. At the time I thought I had made a little bit of a recovery, but I was only fooling myself!

 

In running terms there is a saying “same training, same results” and ironically this is entirely true for pretty much everything else. For 3.5 years I did the same thing over and over again but expected different results and this is where my intervention took a slightly different turn and I started to work with Beverly. I was more than resistant at first but gave in to Jessica’s persuasion. I had to take a much closer look at my behaviour when it came to exercise, work and pretty much every other aspect of my life. I did not find it easy and in truth resented the fact that I had to do it at all. But without looking closely at my behaviour, ingrained habits and expectations it would simply have been another case of same behaviours, same results.

 

Over the course of my journey I have learned a new appreciation and respect for the distance run.  For so long I “just” ran 6 miles when 10 miles became the norm and “just” ran 10 miles when 16 became the new 10.  But when faced with the prospect of not running again, where 6 minutes was my new norm, you soon revaluate things.  The appreciation I now possess to just have the opportunity and ability to don the runners for a matter of minutes and the knowledge that my body can tolerate the distance is as satisfying to me as any marathon.

 

On the 26th of October 2015 I ran my first marathon since June 2009.  It was an experience I will never forget. Walking into the marathon expo as a runner brought tears of sheer delight to my eyes and such an overwhelming sense of emotion, I couldn’t quite believe I was there.  I didn’t have it easy on the day, but nobody ever has it easy and that’s part of the beauty of the marathon.  Running through Castleknock village with the festival atmosphere was something that truly took my breath away and crossing that line to collect the bit of bling that I had waited 6 years to claim, was just amazing. The events of that weekend were a distinct impossibility for many a year. I couldn’t believe I had actually made it and I was beyond thrilled.

 

I am not entirely sure why I felt compelled to write this down, in truth I started this well before the marathon was a possibility. Perhaps putting pen to paper was some form of affirmation on a subconscious level that if I write the end of the story first, the story is more likely to be played out.  But right at the heart of why I wanted to put some words around Chronic Fatigue Syndrome and my experience is that perhaps it may reach someone out there who is going through this themselves and simply can’t, like I couldn’t, see any light at the end of the tunnel. Finding Jessica was the best thing to ever happen to me and I found her through another sufferer. But bigger than that was the opportunity to acknowledge the role my friends have played both through my illness and in my recovery.  I am without doubt incredibly fortunate to have the very best of friends.  My one piece of advice for any sufferer is to lean on those who want to be leaned on, this is something that did not come easy for me!

Rachel, Dublin