Our Stories Trai Some of you will know me as your weather forecaster on BBC Look North and the 3 BBC local radio stations in the North East and Cumbria. Hopefully you won't have guessed that I have a disability: I try not to let it affect my work. But I have had ME since 1992. It was diagnosed soon after I was involved in a traumatic car accident at work, and I never regained the health and energy which I had previously taken for granted. I felt alone, bewildered and ill beyond endurance. Even the most basic tasks of looking after myself became a mountain to climb each day, and there were some days when I felt I neither could or wanted to keep fighting. So began the awful experience of justifying being on disability benefits and being treated as less than a whole person. I was issued with a wheelchair but as my arms were just as weak and shaky as my legs I lost all independence. But I still count myself lucky, as I had a handful of friends who helped me domestically, found new ways to socialise with me in my isolation, and payed for a range of treatments including homeopathy and accupuncture. I thank them all, especially Emma Greenstein who proved to be the best friend anyone could have. Despite some horrifying setbacks to my health and dreams in the early days I was determined to get better and to eventually turn these "wasted" ME years into productive and successful ones. I thought if I could just make some small investment in my future then I might actually have one. |
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So while I was confined to bed I studied through the Open University. They were really supportive both financially and with tutoring, and flexible in terms of time. Some days I felt so ill I couldn't even sit up in bed, but I would talk into a dictaphone and write up the notes and assignments a few days later when I could get up again. This was what kept me going during the worst times, and I hated years when I had to put it on hold. I'm not ashamed to say that, studying part-time, it took me 15 years to finally gain a first class honours degree - with 8 gap years! Graduating in 2007 was one of my proudest moments. http://www3.open.ac.uk/study/
By 1999 I was one module away from completing my degree, and ready to return to work in some capacity. I'd been medically advised I would never work full time again and could expect to do nothing more than some "light secretarial work". Being one to prove folks wrong I bought the Guardian and promptly applied for the first job that asked for a degree in environmental science; Met Office forecaster. I hardly dared to hope I'd get a job, let alone a dream job! But strange things happen and here I am.
Ironically I think that in many ways ME is making me stronger. I'm learning what is truly important to me, and how to appreciate small things and not waste precious energy and clarity. Through only focussing on positive experiences, the years since my diagnosis are actually turning into my most adventurous, productive and successful ones.
With the help of the terrific Chronic Fatigue Management Services in Newcastle, and after talking with Chris who is in a similar position, we decided to take time out to recover the best health we can. We also wanted to use this time positively to raise awareness and funds for ME...hence our giant leap into the unknown...
...And now we're back I know that taking the time to complete our 7 Relaxing Wonders trip was the best thing I could have done. I have come back revitalised, rested, relaxed and with my spirit restored. Until the trip I had increasingly struggled to balance a finite and fragile amount of energy with a job that demands shift working, and constant live multi media performance. During the year before we went I particularly struggled, often having to lie down on the dressing room floor until I'd stopped shaking enough to drive home after a long day and the final energy drain of a live tv broadcast. Life was a series of compromises, with work accounting for most time and energy, and social life dwindling. That was a choice I gladly made, though, appreciating the chance to be able to earn a living again.
I do still have to balance energy and commitments but the journey, and the emotional and physical differences it has made, means that I have more energy to work with - I try to use it wisely!
I am lucky. These days I am relatively well compared to many people with ME, and I have the chance to speak up and help break down some of the myths associated with the condition. Only about 25% of sufferers make a complete recovery. Around 50% make a partial recovery and I am one of these people. However the remaining 25% do not improve and are permanently and severely disabled, and often isolated and neglected by medical services.
ME North East is a wonderful charity, of which I have the honour of being a patron. I'm delighted to have the opportunity to support and publicise the great work they do with ME sufferers and carers of all ages and backgrounds in the North East and Cumbria, including both Chris and myself. The research that we fund will also benefit those with ME around the world, so please please do continue to support and sponsor us! Together we will make a huge difference. Thankyou.
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This is us showing our age at Retrofest earlier this year. Out of shot are our trusty fold-up chairs - you have to make some uncool compromises with ME even when you're relatively well! |
Chris's story
I have always been a driven person, I've always wanted to learn more, be more, experience more, give more, etc, etc. I've always worked or studied full time and usually did voluntary work and/or night classes and/or hobbies and socialising in my 'spare' time.
Then two years ago I started feeling particularly tired. I'd been travelling with work a lot and putting in a lot of hours. My Dad had had a stroke a few months earlier and I was going down to London as much as possible to see him and mum. By the christmas of 2006 I was wrecked and looked forward to some time off. Boxing day I felt dizzy, had sore throat and couldn't keep awake, felt like this for two days and then it went away. I went back to work in the new year and lasted a week then was ill again on and off for a couple of weeks - same dizziness, tiredness and feeling fluey.
Got back to work but had to take it easy and spent weekends in bed getting over the exertions of the week. Went to the doctors at some point and they said I had post viral fatigue and it would probably pass within 4 - 6 weeks but to come back if it didn't. At the easter of 2007 I went away and spent 5 days unable to keep my eyes open and falling asleep all the time. I couldn't walk for more than a few minutes and I felt scared and miserable. I knew about ME from friends - like Trai - who had it and I recognised what was happening.
I went to the doctor and started weeks and months of elimination tests until I got a diagnosis of Chronic Fatigue Syndrome. I was devastated - even though I knew it already - I felt like my life was over and I had been robbed of everything that mattered to me and defined me - my energy, my independence, my never giving up on anything. By this time I was working less hours - my manager was fantastically supportive - and I had managed to get a promotion (just before the easter). With the help of ME northeast I got to see Gavin Spicket at the RVI in Newcastle who is the regional specialist and was referred to the Chronic Fatigue Team for advice and support sessions. My work also paid for me to have some initial CBT (cognitive behavioural therapy) sessions so I could start to learn to cope with the change to my life and whilst I was waiting for an NHS referal. (Thank you Peter Stott from Home, you have been a great help and support through all this).
Eventually I was forced to give in to 4 months off, during which I concentrated solely on things to improve my health - diet/exercie/alternative therapies/CBT and so on - and returned to work starting at just 4 hours a week and over 9 months built up to 28 hours - which I decided to stay at and am still managing. I have a senior management role so it's not been the easiest of jobs and it was brand new to me when I went back, but I've managed to do the role and acheive a lot despite it all.
My social life went out the window - I didn't go out except occasionally if friends came and picked me up and took me for a cup of tea or to the cinema if I was up to it. I was in a drumming band before I got ill and did regular public performances - that had to go. I wasn't able to drive far so couldn't get around much and my great love - shopping - was limited to a quick half hour when I absolutley had to! The upside of all this was I didn't spend a lot of money and therefore am able to afford to go around the world (it's tight but acheivable). I know not everyone is in that position and I'm fortunate to have kept my job so far and not had to go through the hell of proving I'm worthy of benefits.
I have been lucky - my level of ME has been debilitating at times but generally I've been able to function at a basic level - I've not lost my sight or been unable to walk for extensive periods of time. I also haven't had much pain - a manageable amount. I know there are many who have had it a lot worse than me and I appreciate that.
However, it still has changed my life and been hard to accept and I've struggled with not being who I used to be. BUT it has also now led to me recognising what is important in my life - who and what - and doing something about it. I would never have allowed myself 6 months off work before to do what I want and need for myself - ME has enabled me to do this. ME has slowed me down and stopped me worrying about the small stuff - I don't try to do everything anymore and also don't expect so much of others - my having to be perfect meant others had to be too - so I expect it's been a god send for my partner, friends and family too!!!!!
What have I learnt? - you only have one life, you never know what is going to hit you, live it as much as you can, while you can and remember what's worth a fight and what isn't.
Am I a better person for having ME? No, I doubt it, but I am a clearer person (brain fog permitting!) and I know what I want from life - not to be the best anymore, but to be happy and content with whatever it is I do and if I'm not - stop doing it and do something else.
