Rachel Tynan was just 13 when she got ME but, despite the condition's debilitating effects, she hasn't let it stop her following her dreams, writes EMMA CULLINAN.
WHEN I was 13 I got tonsillitis and remember feeling absolutely wrecked. A couple of weeks later I was still not getting better and ended up going through all of these tests.
My glands and lymph nodes were swollen and one doctor was sure I had glandular fever, but the tests said no. I went from one doctor to another for months.
One doctor put me on very strong anti-inflammatories. I remember nothing of that time: mum and dad describe me as being like a zombie.
The doctors, at times, became very cynical. My GP was very good but one visiting GP said, “You just have to go back to school.” And I was thinking, “I want to go back school but I can’t.”
I’d be off for a couple of months and then go back for half-days. I was not quite bed-bound but I could not move much further than from the bed to the couch. Getting to the corner of the street was very difficult.
I was lucky that mum was here – she runs a creche in our house in the mornings, so she would be around in the afternoon. I don’t know what people do all day if they have no one to talk to. That’s what you miss most at 13, the interaction. My twin, David, was great, he was always around.
I had been such an active person, I was on the hockey and basketball teams, and then suddenly I was sitting in the house thinking what am I going to do? I did puzzles – a couple of pieces at a time – because I needed to feel that I was accomplishing things.
Then my GP found a doctor, Joe FitzGibbon, who is an allergy specialist. We adore him, he is God in our house. He began by gently pressing points on my body and had me nearly screaming with the pain; he knew exactly where these areas were, such as glands at the back of my neck which I never even knew were swollen.
He told me not to sleep so much during the day. Before I had been sleeping because I was exhausted but it wouldn’t make me feel any better so he said just stay up, even if I just watched the telly. He gave me a concoction of vitamins and minerals and an exercise regime.
Everything combined made me feel better but I still wasn’t doing full days in school.
I did six exams for the Junior Cert. Studying for them was awkward, I might do half a day and then lie down exhausted. I did subjects that I could do projects for, including art, CSPE and home economics, because I knew sitting through actual exams would be difficult.
Transition year was a big turning point. I could take my time with things and that’s when I learned how to balance my energy levels. If I go out for a couple of nights I will pay for it. It doesn’t happen immediately but two days later I am totally flattened.
So you timetable being flattened into your diary. I finished college, at NCAD (doing a BA in art and design education), two Saturdays ago and the externals were on the Monday so I put in nothing in my diary on Tuesday and Wednesday because I know it’s going to happen and I have to give myself a chance to recover – otherwise it builds up and up and up. I haven’t had a full relapse for a long time but I have had energy crashes which send me back into bed for a week or so. I also have a weak immune system and would be more likely to get infections that will totally flatten me.
Last year I was almost not sick at all but this February, March and April were bad because I was working so hard in college.
I was trying to create a balance between really, really wanting to do my best and get total perfection but knowing that I would pay for it by going that extra bit.
Having ME has probably made me more optimistic because I get through by always looking forward to the next thing and planning for it. It has also made me work harder because I feel I have to justify myself.
I went into the Leaving Cert knowing I had only done six subjects in the Junior and had missed two years of school. I never asked for special treatment in the exams and worked hard and came out with 500 points. You have to be really focused when you know you have only a few hours to study.
Because of the controversy over ME I feel I have to show that I can do things. Now when you tell people about it they often say, “oh my friend/brother has it”.
There was more of a stigma before – when it was called Yuppie flu – but now it is listed by the WHO (World Health Organisation) so people have to acknowledge it. I hope one day there will be a test to get rid of all possible doubts.
I am strong enough now to say that ME is something and to argue my way through it but when you are younger that’s not easy.
Going to art college was the best thing I could have done. I was very open with my tutors and they let me work at home some days. They are very, very supportive at college, luckily, but then they know I am not a messer who is looking for a way out, my grades show that.
I don’t really know about my future prognosis. You can ask doctors ’til the cows come home but you will never get an answer.
Part of me now accepts it. I’ve learnt not to battle against ME, which I did for the first two years: then you end up totally insane. You can’t live life while trying to fight a battle or always hoping that it might suddenly get better. I can manage my life like this and live like this.
A lot of that is to do with the people around me; I have had incredible support over the 10 years I’ve had this.
My family is brilliant and my friends have looked after me from the time I first became sick; they would come over and stay for half an hour. I have an amazing physiotherapist too. With people like that you can’t help but be positive.
My final show at college is based on my ME. I wanted to show other people what living with ME is like, by trying to externalise it. My work includes a swollen textile “spleen” and “glands” filled with broken lightbulbs to show the fragility of the illness.
I’ve not really been in touch with other people with ME. Chat sites can sometimes be very black and that doesn’t really work for me. I don’t want ME to be the centre of my life. It’s about living with it and not having it stating how your life should end up.
What is ME?
ME stands for Myalgic Encephalopathy and symptoms can include exhaustion, muscle and joint pain, chaotic sleep patterns, gastric problems, poor memory and concentration.
It can affect people of any age and often starts with a viral infection although accidents and operations can also cause it, while other people slowly descend into ME.
Other names for these symptoms include Chronic Fatigue syndrome (CFS), Post-Viral Fatigue syndrome (PVFS) and Chronic Fatigue Immune Dysfunction syndrome CFIDS). There is no standard cure and remedies that suit some people won’t work for others.