Chronic Barry is a bastard. A cruel, relentless, vindictive bastard. Meeting him may not be a death sentence but it most certainly is a life sentence. There’s no escape, although some desperate people will try anything.

Chronic Barry robs you of everything. Your job, your social life, your ability to exercise and fulfil your responsibilities to your family. He can rob you of the ability to leave the house and even the ability to get out of bed. For some he robs them of their ability to brush their teeth or wash themselves and some can’t even bear light or sound. He robs you of your dignity and emasculates you. And for some he means death.

And if not death, Chronic Barry is certainly purgatory. Watching the world go by through your window but you’re not part of it anymore. You forget what it’s like to go to work, socialise and actually talk to people. Actual real people. They become a distant memory as do your social skills which are replaced by anxiety on rare forays outside. Chronic Barry makes you feel lonely and isolated and that you no longer have a place or a purpose in the world. He makes you feel like you’re the living dead. Sometimes he makes you wish you were dead.

But Chronic Barry isn’t a guy. You’ve probably guessed that already. Chronic Barry is my name for the illness that I have suffered from for just over four years and which has cut me in half both physically and mentally. I’ll tell you about the origins of that name one day but in the meantime this is my story.

I’m just about to turn 52 years old. I got ill in March 2020 with a virus that I just couldn’t kick. I remember it well, it was just before my daughter’s birthday and I felt rough while trying to organise her party. I had felt run down with a permanent headache and sore throat which persisted for weeks. I kept going to work though, because although I felt shit it wasn’t so shit that I felt I couldn’t go to work. I didn’t think it really justified a day off sick. It was just that yucky under the weather feeling where your whole body aches and you feel fluey and utterly shit- the proper term is malaise, a word that I’ve never felt does justice to just how debilitating it actually is. I thought it would pass but I couldn’t shake it off. Weeks went by. Eventually in mid April I was signed off ill. And that, four years ago, was the last time I went to work.

The summer of 2020 passed slowly and painfully. Every day I woke up hoping I’d finally feel better but just felt like I was getting worse. I was worrying terribly about what the problem could be and an undiagnosed gum problem which had left me spitting out blood when I brushed my teeth had me worrying that I had cancer of the mouth or throat, at the very worst time when the country was in lockdown and all medical services suspended. I did manage to get an appointment at the ear, nose and throat department at the hospital in July and a biopsy thankfully ruled out cancer, as did finally getting an appointment at the dentist after lockdown.

I was also worried that my work might think I was putting it all on. There were plenty of piss takers at my job who played the sickness system, some off for months and even years at a time but although I was pretty sure that my managers knew that wasn’t my style I was still very worried and paranoid. After all, I’m sure we’ve all felt worried that we wouldn’t be believed when ringing in sick to work even when genuinely ill. Imagine having to do that week after week with an as yet undiagnosed illness and without any obvious symptoms, like a rash for example (although there was a period of a couple of weeks during that initial period when my body became itchy all over and came out in hives).

I don’t know what the virus I had was, but it was nasty. It might have been covid, it might not. I fell ill at the height of the pandemic and although I didn’t have any lung symptoms we now know that covid comes in many different forms and that some people are even asymptomatic. Personally, I don’t believe it was covid, I think it was another random virus which coincidentally attacked me at the same time as covid was running riot. I had been run down and not looking after myself very well and my body’s defences were obviously low. But we’ll never know. Does it even matter? Not really, but part of me wishes I knew because it might feel like some kind of closure. It wasn’t until October 2020 that I was finally diagnosed with M.E. (myalgic encephalomyelitis) but it could just as well be long covid, which affects over a million people in the UK alone. They’re both the same thing really, post viral syndromes. It’s just that long covid is specific to one particular virus. Basically, you get ill and never recover.

I’d heard of M.E. before. I vaguely knew it was something to do with tiredness (I was wrong, it’s to do with energy, although you do of course feel tired) and then someone reminded me that it had been called ‘yuppy flu’ in the 1980s. And then I discovered all the people who believe it’s all in the mind or that sufferers are just lazy. Those people are ignorant bastards. We’ll come back to them another time.

The other name for M.E. is Chronic Fatigue Syndrome (C.F.S.). Your body becomes like a broken mobile phone battery which can’t hold its charge. A healthy person would be charged up to 100% with a good night’s sleep but sufferers of chronic barry are lucky if we get out of the red. And if we do, the slightest exertion of energy can be enough to send us crashing back down again.

Chronic fatigue syndrome is a misleading name though. It’s true that the lack of energy is the primary symptom but this doesn’t describe all of the many other serious accompanying symptoms. The relentless fluey feeling (malaise), the many different types of aching which can range from bearable to feeling like the devil is raging inside you and which for me is the main driver of the malaise. The headaches that last for days, sore throats, swollen glands and irritable bowel symptoms. Waking up every single fucking morning feeling like you’ve been poisoned and never knowing how you’ll feel not just from day to day but from hour to hour. I take painkillers most days, especially to be able to sleep. And that’s if you can sleep. Regular phases of insomnia mean many a night laying awake until dawn. Planning or committing to anything is near on impossible. It wipes you out completely and it wipes out the life you once had, never to return.

For the first three years or so I was fairly pragmatic. I told people rightly that there are many other people who are far worse off than myself. I’m grateful that my illness isn’t degenerative or terminal and that I’m not in such pain that I need opiates to control it. I am grateful that I don’t suffer symptoms as bad as some who are permanently bedbound and gravely ill.

But then last year, something cracked. My mother died in August and although I think I’ve dealt with it fairly well it seemed to be the catalyst for a deterioration of both my physical and especially mental health. A long, perpetually grey and miserable English winter compounded both and led to a sense of hopelessness and behaviour which at times has bordered on self harm.

You see, that’s the other thing. It’s not just physical exertion that cripples you, it’s mental exertion too, especially stress. Stress is like poison for sufferers of chronic barry. It causes adrenaline to pump through our body in the same way as vigorous exercise and the subsequent crash is just as bad. Stress, worries and grief all amplify our symptoms to a huge degree. But any mental exertion can cause us to crash. Talking, reading, watching TV. All require energy that most people take for granted.

And then there’s the brain fog which is a horrible, claustrophobic feeling that envelops your brain and really does feel like fog rolling in, clouding your cognitive processes, like a fuse blowing and causing your brain to shut down. For me it happens in situations when I need to concentrate and understand something, for example trying to read instructions for something or playing chess. All you can do is lie down and shut your eyes. It’s like someone pulling the plug on your brain.

So you’re not just stuck at home feeling trapped physically, you’re trapped mentally too because you can’t even relieve your boredom and frustration without worsening your symptoms. Like I said, chronic barry robs you of everything.

So here I am. I’ve always liked writing and now, here, at the end of my tether I’m going to see whether telling you all about this damn illness might be cathartic or maybe make me feel a bit more connected with the world that’s left me behind. Maybe it will just serve as a window into my disintegrating body and mind, at least when I can find the energy to write. Maybe it’s just a cry for help. But most of all I hope that by starting to write this blog it can inform people about this cruel and misunderstood illness that ruins countless lives. Welcome to my life with Chronic Barry.

You can contact me at chronicbaz@gmail.com

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