HOW NI CYSTIC FIBROSIS SUFFERER AMBER GOT HER LIFE BACK BY EXERCISING
Young Co Antrim woman Amber Flannery had to give up her job and social life due to the debilitating symptoms of cystic fibrosis. But she started a programme of physical activity and noticed a transformation in her health. She talks to Stephanie Bell about
Exercise has given Amber Flannery her life back. The Whiteabbey woman has enjoyed her first year in many without being constantly hospitalised thanks to joining the government’s Healthwise programme last October.
Amber (26) was born with the genetic lung condition cystic fibrosis (CF) and enjoyed a relatively normal childhood when she played numerous sports in school.
It wasn’t until her late teens, when she started working fulltime as a supervisor in a coffee shop and socialising with her friends, that her condition started to dramatically impact on her life.
Amber suddenly found herself so susceptible to infection that she was constantly ending up in hospital — spending 100 days there in one year recently.
It was a period which took its toll on her, not only physically — but also left her fearful for the future and lacking in confidence.
She says: “Growing up, mum and dad were on top of everything and when I turned 16 it was up to me to keep myself well and that’s when things went downhill.
“I left school and got a job and was just living a normal life as a teenager, going out with my friends, but it left me susceptible to chest infections.
“I was gallivanting and going to work and I think I took it for granted how good I had been, but the lifestyle took its toll and made me very sick.
“With CF, the more chest infections you have the more scarring of the lungs occurs and my weight would drop as well.
“In one year between the ages of 19 and 21 I spent 100 days in hospital. Up until I started exercising again I was in and out of hospital all the time.
“It can be a nasty illness. Your chest fills up with mucus and you are constantly coughing — and most of the time you don’t look ill which makes it difficult for other people to understand.”
Cystic fibrosis not only affects the lungs but can cause the pancreas to work inefficiently.
To manage the condition Amber has to follow a high fat diet to maintain her weight, take daily antibiotics to protect against chest infections, and take numerous vitamin supplements after her meals to counteract her sluggish pancreas.
Maintaining a healthy weight is a constant battle for her and, ironically, as most of her friends complain about trying to keep weight off, Amber struggles to put it on.
At her lowest she dropped to below six stone which at five foot three inches tall is somewhat below what is healthy. She is currently maintaining a weight of around eight-and-a-half stone.
She says: “The more weight you have on the stronger you are and more able to fight infection. For someone with CF your health and weight and chest go hand in hand.
“I have been on hormone tablets to try and increase my appetite and I have to eat 4,000 calories a day. I take lots of vitamins because of my pancreas and my high fat diet.”
Three years ago she was at her lowest point and realised that she had to make some drastic life changes. She realised she was too ill to work and reluctantly left her job and gave up her weekly nights out with friends.
She says: “My weight was down and I was constantly coughing my lungs up. Everyone around me was getting upset seeing me ill and I realised I was being selfish. I left work and stopped going out with my friends.
“I still do things in moderation but I learnt that I needed to take control of my life as the CF was taking over and I was letting it. I got so low that I had to tell myself that the only way was up.
“Leaving work was hard as I have always worked, even through school I always had a Saturday job. But I found I was constantly having to take days off on the sick which I hated.”
However, a new idea for helping Amber’s condition came after discussions among her medical team.
“The staff on the CF ward in Belfast City Hospital and my GP got together and decided that I could benefit from exercise and they suggested Healthwise which I started last October,” she explains.
“I was into every sport going at school — basketball, netball, hockey and football — but I hadn’t exercised since leaving school. I realised that I missed it as I love that feeling when you are knackered and know you have done yourself good.”
Physical activity referral programmes exist throughout Northern Ireland and patients are usually referred by GPs.
In Belfast the scheme is called Healthwise and is operated by social enterprise Greenwich Leisure Limited (GLL) in the city’s leisure centres in partnership with Belfast City Council and the Public Health Agency.
Healthwise, which also runs in the South Eastern Trust area, is designed for people with health-related conditions who may benefit from regular physical activity, under the guidance
❝ I have been on hormone tablets to try and increase my appetite and I have to eat 4,000 calories a day
of qualified exercise professionals.
After the initial 12-week scheme is completed, participants are then offered membership of their local gym at a reduced rate to encourage them to maintain their new healthy lifestyle.
Due to being vulnerable to infection, Amber needed a one-toone programme which she was able to do with the help and support of Healthwise co-ordinator Victoria Irving at Grove Leisure Centre.
After a warm-up on an exercise bike her routine — which normally lasts an hour — includes a workout on a cross trainer and treadmill followed by squats and lunges with weights. Amber says she felt the many benefits very quickly: “It has been life changing. In the past year I have only been hospitalised once and I haven’t had a clear run like that since I was 17.
“Up until I started the programme I would have been in and out of hospital every two months and I remember going in three times back to back just a week apart.
“My lung function has just shot up and I have been building muscle which has helped my weight to go up. I’ve noticed that it really helps me mentally, too. If I am feeling down or worried about my health, going to the gym makes me feel really uplifted and good in myself.
“Everyone else is counting on you doing well and you feel proud of what you are achieving which I haven’t felt for a long time.”
Having had to leave work and curb her social life, Amber, who is in a long-term relationship with her partner Lee Beggs (30), a warehouse supervisor, now feels that she has a future again.
She adds: “I couldn’t plan anything before — holidays or going to a friends’ birthday dinner or anything nice — and now I can.
“I also feel that I can now look to the future whereas before all
I could think about was my next hospital admission or weight drop.
“For the first time in years there are things I can look forward to as I believe they are achievable now, like having my own home and potentially having a family. I don’t want massive things, I just want to be alive and have a normal life.”
Amber says her parents Karen and Chris and her sister Kirsty and brother-in-law John McCullough, as well as her boyfriend Lee, have all been a huge support to her. She also paid tribute to her personal trainer from Healthwise, Victoria.
She adds: “If my lung function goes up a couple of per cent they are all so proud of me and it is amazing to have that support.
“Victoria has been unbelievably supportive. She understands the health side of CF and she has understood me so well.
“Some days I have had to cancel because I am not well and I would worry that she would think I am unreliable, but she always tries to accommodate me and how I am feeling and would tweak things to suit me. She is always there and always willing to help.
“It is not just a job to her, she really wants to help people to rebuild their lives and better themselves.”
As Healthwise co-ordinator, Victoria works between leisure centres all over the city and sees every day the benefits of the programme.
She is one of four coaches covering Belfast and between them they would see around 20 people a week. At any one time there are more than 1,000 referrals for the 12-week programme across Belfast.
Patients come to Healthwise with a range of conditions including anxiety, stress, depression, high body mass index, diabetes, COPD, hypertension, osteoporosis, Parkinson’s disease and brain injuries.
Victoria and her team, who are given the GP’s notes on each patient, have an initial consultation to derive more information and if they think the patient is able to use the gym they design an individual programme.
“It depends on each patient and their condition, and each programme is very individually designed,” Victoria says.
“For example, with someone with a brain injury we will work on balance and for someone like Amber we of course worked on her lung function but also on her confidence.”
Victoria has been delighted to see Amber’s health go from strength to strength during the scheme.
She says: “The improvement in Amber has been fantastic. Her lung capacity has really improved and she is not coughing as much as she was.
“Now she is doing it on her own which is great as that’s what every coach wants to see.”
And she adds: “I think it is great to see this holistic approach to treating medical conditions and it is a great way for people to see the benefits in their lives.
“Most people see a big change over 12 weeks and go on to join the gym and work out by themselves. As well as the physical benefits to their health, most people enjoy the feelgood factor and the social element.”