'˜My illness felt like someone was beating me with a baseball bat...'
Chronic fatigue syndrome is a debilitating condition which causes persistent exhaustion and affects everyday life and doesn't go away with sleep or rest.AASMA DAY talks to two Lancashire sufferers and finds out how there is hope at the end of the tunnel and how they are learning to live with the condition with support from a specialist NHS service
Wrongly labelled by some people as being a condition that affects “lazy people” Steven Kidd know only too well this isn’t true.
Steven, 30, who lives in Lancaster, went from being an extremely active person to someone who couldn’t get to the end of his street without feeling completely exhausted.
Steven, who has an 18-month-old daughter and two stepchildren, recalls: “I went from being a very active person of athletic standards to becoming a person very limited in what I could do.
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“I used to run, cycle and ride cycling road bikes.
“I was going to ride cycling road bikes at a professional level and got myself very close to doing so.
“But then I went from being incredibly fit to this.
“My heartbeat would increase and I would feel muscular pain and be constantly exhausted.”
Steven’s symptoms began with dizziness, chest pains and muscular pains and he came down with a lot of viral infections.
Gradually, the symptoms levelled out but he was left with total exhaustion.
Steven, who was working as a healthcare assistant, even had to give up his job as it was too physically demanding for him.
He explains: “I went to my GP a number of times and had a cocktail of symptoms that can look totally like something else.
“However, they couldn’t fathom what it was.
“As the illness progressed, different symptoms appeared and it was my heart that was of concern.
“I underwent tests in hospital and they just couldn’t understand what it was that I was suffering from.
“It is a difficult condition to diagnose as the symptoms are shared with other illnesses and there isn’t much information about it.
“It took three years for me to be diagnosed.
“When I was referred to Lancashire Care’s service, it was like a new world had opened up to me.
“I am now far more able than before. The service has been great and really taught me how to manage my energy levels.
“This started with small things such as walking and it just took off from there.
“The service provides a unique service in helping sufferers manage themselves; grappling with that was a full-time job itself.
“I had been reduced from being an athletic person to someone struggling to do basic everyday tasks.
“The entire process was exhausting but then there was light at the end of the tunnel when I started to be seen by the CFS/ME Service.
“I had sessions with them every few weeks and was able to adapt myself to the condition.
“The most horrible thing is getting diagnosed with it. Some people think it’s psychological but it’s not – it’s something many people do not know about.
“It did depress me a lot but I managed to get through it.
“A lot of it is about having a positive mindset and not giving into it.
“I am not back to how I was but am a lot better.
“I now do martial arts three times a week depending on how I feel and am able to spend time with my daughter.
“Some people say it’s due to laziness, but it’s not lazy people who get it.
“It’s people who overwork themselves.”
Josh Durham became ill with a viral infection three years ago after which he was left with severe vertigo that caused him to lose his balance.
Josh, 49, who lives in Lancaster, says: “I had post viral fatigue, then CFS/ME. I was only properly diagnosed a year ago.
“As there is no test for CFS/ME, they can only really diagnose it once they have exhausted all avenues. As I have friends who have CFS/ME, I had mentioned it to doctors and knew quite a lot about it. I had been taking a lot of time off from work and just needed a diagnosis to understand how to support me with this.”
Josh, who was working as hate crime officer for Wyre Council at the time, says he was lucky as his employers were very supportive and allowed him to work from home.
Before becoming ill, Josh used to walk his dog morning and evening and spend two to three a day walking.
He says: “Over the weekend, I would walk around eight miles along the canal. My job wasn’t physically demanding, but involved being on my feet, doing presentations, working all day at events, running activities, meeting members of the public face-to-face and doing casework with clients, which is pretty intensive. I also used to dance once a week.”
Josh then got flu which was nasty and affected his ear. Things then began falling apart and Josh couldn’t stand up. He recalls: “I couldn’t walk the dog due to constant exhaustion. I had to stop driving. My eyesight would also get blurry and still does.
“It was frustrating that I wasn’t able to diagnose what it was. It felt like someone was beating me with a baseball bat.
“I actually ended up splitting up with my partner as I couldn’t be there for him emotionally and I wasn’t interested in a relationship. Once I was diagnosed and came into contact with the service, I learned about pacing. I needed advice on how to manage an erratic work pattern by pacing myself.
“This involves putting rest periods in and planning activities so you can remain symptom free and perform at an optimal level. The biggest thing for me was the brain fog that comes with ME and I wasn’t able to concentrate.”
Josh, who now works for Victims Voice, an across Lancashire hate crime project, is back to being able to walk his dog, a Lurcher called Cally. He says: “You can easily relapse and be unable to go into work.
“However, my employer has been very good and let me work from home. I was close to leaving on medical grounds.
“The work that the team has done hasn’t removed the Chronic Fatigue but allowed me to live with the condition and to be able to manage it better. There is help out there. The service is great as they can show you a lot you won’t know about. The condition is a hidden disability.”
PEOPLE in Lancashire are encouraged to recognise the debilitating, often painful and isolating condition known as CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) and take advantage of the help that Lancashire Care Foundation Trust offers to people diagnosed with the condition.
Irene Lewis, specialist occupational therapist for the CFS/ME Service at the trust, says: ““CFS/ME is an illness that affects the body’s systems and the way that they work, particularly the nervous and immune systems.
“Feeling constantly tired or exhausted is one symptom and this is very different from normal tiredness.
“There is sadly very little awareness about CFS/ME with numerous symptoms shared with other conditions.
“As a result, people with the condition are diagnosed rather late. However, there is a lot that can be done to help people manage the condition and the CFS/ME specialist service is at hand to empower people with the condition to live as normal lives as possible.”
• For more information, contact the CFS/ME team on: 01772 777022 or visit: www.lancashirecare.nhs.uk/CFS-ME.
• Myalgic Encephalopathy (ME) is also known as Chronic Fatigue Syndrome (CFS). People diagnosed with the condition are referred to the CFS/ME Specialist Service by GPs.
• CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) is a condition defined by the presence of many symptoms which can include: chronic fatigue, unrefreshing sleep, muscle pain, cognitive dysfunction (brain fog), sensitivity to sound and light, depression, anxiety, irritability and mood swings. Other symptoms may include digestion problems, chills and night sweats, dizziness and fainting.
• These symptoms are not exhaustive and can vary between individuals, as can their severity.
• Debilitating fatigue and brain fog, in which the person has cognition problems such as poor concentration and memory, are common among most people with CFS/ME.