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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

Investigation beliefs underlying pain-related fear

Pain-related fear is one of the strongest modifiable factors of disability in people experiencing chronic back pain (Turner et al., 2006).

Samantha Bunzli and her colleagues at Curtin University, Australia, recently performed a qualitative study investigating the beliefs which underlie pain-related fear in people with chronic back pain.

The main theme which arose in this study was that the experience of pain did not make sense and multiple factors may lead to a vicious cycle of pain-related fear. Those experiencing pain attempt to make sense of their pain, drawing on some unreliable sources such as their personal experiences, societal beliefs and certainty in their diagnosis. Certainty in diagnosis was often not found. The authors conclusions questioned whether including processes to make sense of pain in treatments may influence fear reduction.

Our Vitality360 therapists all undertake a strong educational component when working with those with pain, to help explain, reassure and demystify the pain response. We agree this makes an important difference.

Read the full article here.

Vitality360 win VRA award!

We are delighted to announce that our Inspiring People project won a prestigious Vocational Rehabilitation Association in their fourth award ceremony during their conference on 15th May. Inspiring People was shortlisted, along with four others, in the VR Initiative category.

The Vitality360 Inspiring People project challenges the perception of what’s possible in CFS/ME recovery. Involving the dissemination of positive and inspiring stories and strongly supported by ex-patient volunteers, this project shows people that recovery is possible despite negative perception, fear, and stigma. It provides people with a strong message of hope, and links them directly to evidence-based therapy messages.

Evidence-Based Therapy Management of CFS/ME – Training Course in Liverpool Announced

We will be holding our next training course  in Liverpool in March 2014. The course is entitled ‘Evidence-Based Therapy Management of CFS/ME, and will be held at Broadgreen Hospital

The course will take place over 3 days, with the first two being the 26th & 27th March 2014, with a further follow-up day scheduled for the 23rd September 2014. The course will be led by Jessica Bavinton.

The course is open to all NHS employees, and members of BACME can benefit from a subsidised rate. For further information and an application form please contact polly@vitality360.co.uk

 

Inspiring People

Vitality360 is starting quarterly group discussion forums, open to all.

‘Inspiring People’ allows people to hear first-hand about an individual’s journey by dialing in to a call. The person sharing their story will be someone who either was or is affected by chronic fatigue, who has experienced significant changes in their health having worked with Vitality360. The calls are around an hour in length and also provide an opportunity for participants to ask questions and connect with others with similar health issues. The calls are designed so that people have the option to simply call in and listen, without having to speak should they wish. Attendees to the call are welcome to join for the full hour or a shorter portion if preferable.

The first session is planned for Thursday 20th February from 2 – 3pm, the subsequent calls are planned for May, August and November. If you have any questions about ‘Inspiring People’ please get in touch with Sara:  sara@vitality360.co.uk

 

Video: Kelly McGonigal: How to make stress your friend

Click to watch video: Kelly McGonigal: How to make stress your friend

This video was forwarded to us by someone we are working with in our clinics (thank you – you know who you are!).

During a conference talk, Kelly McGonigal talks to us about the stress response and challenges us to see the response as a positive physiological response that increases courage and our ability to face a challenge, rather than a ‘bad’ or ‘dangerous’ response that does our health ‘damage’. It also highlights a physiological reason for giving and receiving care and support from people around us, and the protective impact this has our long-term health.

At Vitality360, we see the stress response as a normal response to a threat: our body simply ‘doing its thing’ and helping to prepare us for taking action. Nothing to fear, quite understood and understandable, and in many ways there to take care of us when we are in a challenging situation. However, we’ve enjoyed Kelly’s take on this, and agree that the experience of ‘courage’ or ‘joy’ might feel very similar to ‘stress’, and find the protective link between ‘seeking help from others’ and ‘improved resilience to stress’ very interesting and worth looking into further.

So, next time your heart is pounding or you are feeling tense and low, you can say to yourself ‘that’s my body telling me to be courageous, and helping me to overcome this challenge.” The stress response, by also releasing oxytocin, is also ‘asking you’ to call a friend and allow people to help, so be brave: let them in.

 

Sue Luscombe – Specialist Dietitian and Nutrition Consultant

 

Ahead of the Online Clinic on CFS, ME and Fibromyalgia, which is running from 14-20th August (click here for more info), we thought you might like to know a little more about Sue Luscombe, Vitality360’s Specialist Dietitian and Nutrition Consultant.

Sue’s interest in food and cooking, combined with wanting to work in a caring profession, led her to study Dietetics for 3 years in Leeds, (now Leeds Metropolitan University). Since qualifying she worked in several London teaching hospitals in different clinical and management roles, before moving to Bedfordshire. 10 years ago Sue’s NHS career had to take a back seat,  as she chose to work part-time to support her teenage daughter who was moderate-severely affected with ME and too unwell to attend school. Since then Sue has worked hard supporting those with ME and has a deep understanding and empathy for those affected.  She  is now recognised as one of the leading dietetic experts for ME in the UK.

To find out more about how Sue can help in your situation, please contact us or call 020 7263 5026

 

 

Online Clinic on CFS, ME and Fibromyalgia

From 14 – 20 August 2013 NHS Choices and talkhealth will team up with ME Association, Action for ME, AYME, CFS Research Foundation, FibroAction and Fibromyalgia Association UK to present an Online Clinic on CFS, ME and Fibromyalgia.

A team of clinical experts, including Vitality360’s Jessica Bavinton and Sue Luscombe amongst others, will be available to answer questions about issues surrounding CFS, Fibromyalgia and ME.

If you are affected by CFS, ME or Fibromyalgia and would like advice and help, this online clinic offers the opportunity to anonymously ask the panel of experts any questions you may have surrounding these conditions.

For more information about the clinic and details of how to participate, please click here.

To read more about Sue Luscombe’s Dietetic work, click here.

Please feel free to contact us for more information or help. 

 

 

 

Tennis for Visually Impaired Players

I was invited to umpire a rather unusual and utterly inspiring tennis tournament last year, and this year I had the privilege of playing in it.

This was the Metro national tennis tournament, organised for and by people with visual impairments (VI), also known as ‘VI tennis’. Much to my surprise, it is a fast and furious game.

Many people can’t see their opponent, so the rule is to always shout ‘ready?’ and when the opponent replies ‘yes’, the server will shout ‘play’ when the serve is about to be hit. Everyone is allowed two ball bounces, with those who have very low vision / totally blind being allowed three. The ball contains a bell or ball bearings, which gives the players the auditory input necessary to find the ball on the court.

As a Physio, I was astounded at their ability to stay upright as they ran towards a ball with significantly limited visual information, and the determination of those who did fall quite badly, obtain a huge carpet graze, and got straight back up again as if nothing had happened.

I was also amazed at the brain’s ability to find the ball so quickly and to somehow get the racket in the right place at the right time.

As well as the usual doubles and singles, the tournament also put on a mixed vision tournament, whereby a fully sighted player would partner up with a visually impaired player. I was invited to play by Paul, who has macular degeneration.

It took a bit of getting used to the shorter court, ball and racket (and I was only allowed one bounce and not allowed to volley), but it turned out to be a challenging and fun game.

Personally, I enjoy being around inspiring people undertaking great things. It’s also satisfying to support a new and emerging sport, and to teach newcomers how it all works. This is not just a sport, but a social opportunity for people who may have become quite isolated. I also recognise that if I were to lose my own sight and be unable to play tennis, I would suffer greatly so it’s a pleasure to be able to facilitate the sport.

Metro are trying to get the game into the Paralympics one day, and this year during the Paralympics showcased the sport at St. Paul’s cathedral. Funds are still required to develop the unique ball, and to ensure new players get the right coaching and opportunities. Physios may be in a perfect place to identify new players, or to signpost visually impaired people to this unique sporting opportunity.

The sport is very new, so finding more players is essential to further expand the game and ensure there are sufficient numbers of people to play competitively.

Maybe you know someone who is visually impaired, or have impairment yourself? Maybe you could help set up a group or help with sessions near you? Maybe you’d just like to be involved? If you or anyone you know would like to find out more about VI tennis, either as a participant or volunteer, see: www.metroblindsport.org.uk

 

 

Graded Exercise Therapy Training Course

We recently returned from a training course we provided to NHS employees in the North East of England. Over the course of 2 days, the course, led by Jessica Bavinton, provided NHS staff from across several different disciplines, including Physiotherapy, Occupational Therapy and Psychology, the opportunity to gain an insight into the concept of Graded Exercise Therapy, and its use in practise.

The course attendees also had the opportunity to gain valuable learnings by speaking via video conference directly to a past patient of Jessica’s who had previously suffered from Chronic Fatigue Syndrome, and who’s life has been turned around by the implementation of a Graded Exercise Therapy programme.

Many of those attending the course had little or no previous experience with Graded Exercise Therapy, and the majority commented at the end of the course how confident they were to immediately start implementing some of the concepts and theories they’d learned on the course. Confidence levels in the use of Graded Exercise Therapy went from an average of 4.6 out of 10 before the course started to 8 out of 10 by the end of the course! A further day of training is scheduled for November 2013, where all the course attendees will return to share and discuss their experiences and findings with the use of Graded Exercise Therapy in their work since their two days of training.