A man who is often too exhausted by illness to tie his own shoelaces is determined to overcome the condition to complete a 5k charity walk.
Barry Gardiner, 49, suffers from nonspecific interstitial pneumonia and idiopathic pulmonary fibrosis, which is often fatal.
Just keep going, because if you don’t keep going then you’re going to give up
It causes shortness of breath, extreme coughing and exhaustion.
Barry spends much of his time supported by oxygen, and is waiting in hope of a double lung transplant.
He spent 30 years as a carer, many years with The Dene hospital in Goddards Green, but the job became too difficult so he has moved to a different department.
He still works full time, and gets up at 4am to ensure he has enough time to get ready for work.
“I get up at 4am and set off at 7am, even to have a shower takes my breath away, I have to sit down for ten minutes.
“I find it difficult to get dressed, it’s extremely difficult putting my shoes on and tieing them, I can’t really do laces.
“By the time I get upstairs I’m out of breath.
“By the time I come downstairs I’m dead.
“If I go to the kitchen I’m out of breath.”
Despite small tasks draining Barry’s energy, he needs to work full time to pay his mortgage and bills.
“When you’re that tired, you really just get to that point where you go, right, I’ll just have to get another coffee.
“I have to break through that barrier, and just carry on, just keep going, because if you don’t keep going then you’re going to give up.”
Barry has not let the life-threatening nature of IPF get him down.
“It’s scary, it’s very scary. If they can’t do anything for me then what awareness I can get, and raising money for it, if that helps someone else then I’ve done my job.
“If nothing can be done for me, then so be it.”
Barry is attempting a 5k walk to Brighton Pier on June 20, part of his plan to raise £50,000 for the British Lung Foundation.
“Whether I can do it is another thing,” Barry said.
“But I’m determined, if it means I collapse then so be it. It could take two, three, or four hours.
“In my head I can do it.
“I can’t do half the things I used to do, which is frustrating.”
He also suffers severe coughing, which sounds ‘like Velcro’.
“It is not nice, my voice starts to go weaker.
“I can hear my voice is weak now,” he said.
“First thing in the morning I can talk, but gradually throughout the day I get more and more tired.
Barry needs a double lung transplant as his lungs become thickened and scarred.
“Mine is a very rare case, but you’ve got to fit a certain criteria.”
Barry had a close call in The Royal Sussex County Hospital when he collapsed, only for a nurse to resuscitated him.
“If it wasn’t for him I think I would have been dead,” Barry said.
Barry is holding a ball at Sayers Common Village Hall which was offered free of charge, on May 30, with all the proceeds going to the British Lung Foundation.
Tickets are available from Sayers Common’s community shop.
He has another ball planned for July 4.
Friend and colleague of Barry, Angelika Hajdecka, said ‘even the smallest tasks exhaust him’.
“But he carries on without ever complaining,” she added.
“There is very little awareness about the disease and we would really like this to change and for there to be a better awareness and further research about this disease here in the UK.”
To donate visit www.justgiving.com/Barry-Gardiner1