My life with sarcoidosis

The story of Craig

I was always a fit and healthy person, I’d never spent anytime in a hospital up until 6 1/2 years ago when my life changed completely. It started with an out of the blue kidney stone, whilst I was working out of town.  Little did I know this was an early warning sign of things to come. I carried on my life as best I could, not realising the little things that were changing under my nose. I was starting to fall asleep after getting in from work ( I’d never done this before ), physical tasks were taking longer to recover from and I was slowly losing weight ( so slowly it was hard to tell ). This persisted for probably a year or so and I refused to get help and knowbody was honest enough to tell me how bad I looked. Around this time it had taken hold of my body that badly it was taking me 20 mins to put on a pair of socks it was literally taking all my energy. I’d stopped working as I could no longer do standard tasks without taking enormous breaks to get my breath back. I ached from head to toe constantly, it felt like I had the flu day in day out.

I eventually admitted defeat and booked an appointment at my gp’s. I remember going to the doctor’s on a Monday morning, he took one look at me and said ‘there’s only one place your going’ with that an ambulance was called and I was given a nebuliser while I waited as my saturated oxygen levels were 82%.

Next stop Hull royal infirmary, were I had a constant supply of oxygen through my nose, antibiotics and fluids through a canula in my arm. I had pneumonia and was severely dihydrated I spent 7 days in the hospital, while they ran just about every test you could imagine from Pet scans, CT scans, x-rays, breathing tests and eventually a lung biopsy. I was finally diagnosed with pulmonary sarcoidosis. 

I left the hospital with what seemed like a suitcase of medication. Prednisolone, anandrolic acid, lansoprosol, naproxen and codeine. I was on 80 mg of prednisolone in the hospital and 40 mg by the time I’d left.

I was required to attend castle hill outpatients every 6 weeks, to see if there were any improvements to report. At my worst my lung function was at 36%, were walking up the stairs was a massive achievement.

Over the following months/years my condition swings up and down at will. I have the very rare good day and alot of bad days were the condition flairs up and renders me completely useless, other than be alive.

I have asked the question why me more times than I wish to remember, I have tried the positive approach but when you feel that bad on a daily basis it’s very hard to motivate yourself otherwise.

I have tried to beat this disease by studying journals, online help forums, I’ve learnt reiki, mindfulness. I’ve looked at pain management, read books on the way we breath, had numerous mental health consultations. I ve tried to keep active, eat healthily all to no avail. 

I could never thank my wife enough for having to put up with me. I must be one of the most miserable persons on the earth to live with, all this while raising two children. I wish I could say the same of my so called friends who I have not seen or heard from in years. I could count on one hand how many people have bothered to take the time to call and just ask ‘How are you doing?’ It means more than anyone could ever know.

I wish I could say that there is a happy ending to all this, but unfortunately not this time. All I can say is I will keep fighting until this finally takes the little bit of me that is left to take. In the meantime I will continue to struggle my way through life, hoping one day I’ll be out of this misery.

Thanks for taking the time to read my story of coming to terms of living with a rare disease.

Thanks

Craig