A couple of days ago I answered a twitter #journoenquiry regarding ‘invisible disabilities’. I’m a long term sufferer of fibromyalgia which since it has reared its head again in a quite spectacular fashion has also reminded me how bloody painful and debilitating it can be. Although I don’t regard my fibromyalgia as a ‘disability’ I contacted the lady in question to see if my story may be of interest to her. As I answered her questions, I was astounded to recall the memories. Just how much pain I live with on a daily basis (not normal) and that yes – it does affect how I live my life. But the memories also a reminder that it does not have to be a disability if you do not want it to be. Anyway, I thought I would share the Q&As here, not least as a reminder to me that as I have over come it before, I can do again…
1. How does fibromyalgia affect your daily life – and a bit of background on how long you’ve suffered from it?
I suffered my first episode of fibromyalgia in October 2005. I was training for the New York City Marathon at the time (after completing London in April 2005 in just over five hours). I scored a personal best in a hilly half marathon of one hour and fifty eight minutes in September 2005 and was in the condition of my life.
In Oct 2005 I attended a three week training course via my work at the time. It was a course to teach me how to teach self defence. I was already employed as a trainer in my workplace and taught first aid as well as classroom based stuff. On the first day, I was told (because I was overweight) that I did not ‘look the part’ and I should not be on the course. I was ‘too fat’ to be a self defence instructor and it showed a ‘lack of discipline’. Then they started failing me. In each of my assessments whether classroom, practical or lesson planning. After two weeks of being failed at every lesson, my confidence was in tatters. I had no idea how I was going to go back and do my day job. A job that I was good at (I’d just passed my PGCE prior to the training course and so had been assessed yielding positive results there).
The tutors of the self defence course destroyed me and I started to develop symptoms including muscle pain, depression and joint stiffness from then on.
The effect on daily life varies depending on how I’m feeling on the day. I can’t maintain one position for too long. I have to vary my movement which means being desk bound can have consequences. I struggle to concentrate for long periods of time and have a very poor short term memory which means I have to write everything down. I make constant notes on paper and iphone. I’m constantly in pain which is incredibly tiring and also means sleep can be very poor. I also suffer from depression at times, although I have resisted taking medication preferring to use exercise as therapy. But if manage it properly (ie healthy eating, regular exercise and plenty of sleep) I can manage most of the symptoms.
2. How does the fact that you are not registered as disabled affect your life? I’m not sure it does actually. I hide most of my symptoms in an attempt to have a ‘normal life’. My control measures tend to work reasonably well.
3. Could you tell me a little more on why you decided to start sport – especially what it was like in the beginning? and did it get easier?
I’ve been a runner all of my life. I started running with my Dad when I was young and played a small amount of county hockey for Durham and netball for Hartlepool town in my college years. I was a promising shotputter with Gateshead Harriers as an intermediate (age 15 to 17) and attended three English Schools champs as well as English and Scottish Nationals. I also studied sports science as part of my degree. Sport has been part of me forever.
When the episode that I describe at the training course above happened I really struggled to go back and do my job properly. Physically it was excrutiating to move. I could barely walk at times and was in constant pain through my shoulders, back and into my legs. It signifiantly restricted what courses I could teach. Even my first aid (which I loved) I struggled with because I couldn’t get down to the floor (or back up again)! I had the support of a wonderful colleage who helped me out a lot!
But when it came to the self defence classes I should have been teaching, my employers could not understand why I couldn’t teach it. They sent me to occupational health for tests, many times, all which came back negative. They accused me of lying about the pain and blamed my running (I wasn’t running then anyway because I couldn’t). They issued me an ultimatum. Either I give up sport or face disciplinary action.
I stopped exercising altogether and the symptoms got worse. Then, I went for tests at St Georges hospital. The muscle response test and bone density tests came back normal but the consultant called me in to see him. He listened to my story and said that although I had fibromyalgia my muscles were working fine and were desperate to be used. Because I was young – early 30’s – he told me to treat my symptoms holistically – massage therapy, counselling, music therapy and most importantly exercise. He said giving up my sport was the worst thing I could do and to go back to running (and not be ashamed to walk – lots to start with – and start slowly – literally five minutes at a time). It’s not an exaggeration to say that he saved me life.
I did what he said – five minutes running in between lots of walking. Stopping to stretch helps lots so I did that too and signed up for lots of massage – I found a wonderful massage therapist who I sometimes saw twice a week – she almost always worked much later than the hour I paid her for – but she believed I could start running properly again and never gave up on me – even when just touching my skin was almost unbearable.
Soon, I could cover one mile and then two and then in November 2006 I completed the New York City Marathon. The training was sub optimal for the marathon. I shortened my ‘longest run’ to only 14 miles and often had to walk all of that to complete it and did lots of cross training (turning my legs on a bike) but it did get easier. With confidence in myself growing and in my job receding, I resigned and opened a specialist running shop in Surrey.
I then signed up for Ironman Switzerland in 2009 and following a training programme heavily based on cycling, I completed that with 20 minutes to spare before cut off. I’ve since finished several marathons, some thirty mile runs and three Ironmans. Sometimes with a sprained back or shoulder if I’ve pushed myself too far in training or it’s just ‘gone’ beforehand.
A true testiment to what the body can do if the mind is willing.
4. How does fibromyalgia affect your sport? And do you feel like it’s benefitted you mentally?
I’ve had to adapt my training significantly from that seen as ‘traditional’. I don’t follow a ‘training plan’ as such. I haven’t done a long run over 14 miles for marathon since the first one. But have found that if I substitute some runs for high intensity cycling (spin classes) I get a good training effect from less time which reduces my symptoms.
Consistency is king though and little and often definitely yields the best results. I’ve never got any where near the fitness I was before I developed the fibromyalgia symptoms – a sub 2 half is long gone and I’ve never broken five hours for marathon – I think that is a symptom of a lack of time on feet. I also find after a bout of more severe fibromyalgia symptoms, I often have to go back to basics: beginners running group with 1 minute runs followed by 1 minute walks; gentle 15 minute spins with no resistence just to get moving again.
I can’t hold onto my fitness like I used to… (that could be age too though ;o)
It has definitely benefitted me mentally though. It helps me lift mood when I can feel the depression cloud coming in. It helps me think – especially when I’m planning or trying to recall short term memory. It helps me plant memories in my head – I can attach them to locations (a fence post or a tree on a cycle path), or songs or smells etc which makes them easier to recall in the future. It also helps me to live in the moment. Reminds me how lucky I am and how much I have to live for.
5. What advice would you give any other sufferers of fibromyalgia?
I would reiterate what that consultant told me… holistic pain management is the key and don’t ignore you treating your head as well as your body. Look at stress relief. Keep moving, even if it hurts. Little and often is great. Address your diet; a paleo outlook with high fat low carbs, no grains, no nightshade plants, little dairy and alcohol and definitely no sugar works best for me. Look at Vitamin D suppliments and lift heavy weights (under supervision – taking up Olympic weightlifting almostt four years ago with my PT has helped enormously)
Most importantly, never give up!