Thank you to everyone who read my first blog post and gave such amazing feedback. It felt good to express myself but I wasn’t sure what to write about next, or more accurately the direction I want this blog to take in general.

My first post was an explosion of pent up frustration. Frustration with the constantly unpleasant symptoms and the cruelty with which chronic barry (chronic fatigue syndrome/ M.E) takes away your life. Not being able to take my daughter for a day out without becoming ill. No longer having a social life for the same reason. Not being able to exercise anymore. I used to love running, cycling and ten mile power walks stomping to banging music in my headphones. My daughter learnt to ride a bike in the time since I got ill but I’ve never been for a ride with her. Indeed, having to sell my beautiful carbon fibre racing bike last year was an admission that I was never going to get better.

But what next? I’m not going to be giving you my weekly tips about nutrition or anything else that might improve the symptoms of chronic barry sufferers because the truth is I’m a terrible patient in many ways. For example, one thing that is agreed that can help sufferers is something called pacing. Breaking up your day up into small chunks and taking regular rests where you meditate and recharge your body and mind. You should do it even if you’re feeling (relatively) OK and it does help. If you’re hanging, a ten or twenty minute lie down can really give you a second wind.

But I only ever tend to do this when I’m feeling really tired or unwell and even then it’s reluctantly. A lot of the time I simply don’t remember to do it and I actually resent having to lie down and clear my mind when I’m already bored and frustrated and craving stimulation. I just can’t turn my brain off. I’ve been going stir crazy. I always want to do something… anything!

It didn’t help my mental state that after I was first diagnosed I took a look at the prognosis for chronic barry sufferers- by the way, I’m going to have to find a collective name for us. There is an acronym PWME (People with M.E.) but that’s pretty lame really. People with chronic barry… Bazzers maybe?

Anyway, I took a look at the prognosis for us bazzers and saw that there’s something like a 5% chance of full recovery. Some people may see their symptoms improve slightly but basically the chances are that this is for life. There has hardly been any research into the condition, although because of the huge numbers of people with long covid there is now far more happening which is hopeful and I’m very happy to be taking part in the world’s largest chronic barry study called Decode ME

But there isn’t a cure, not yet anyway. There are charlatans who claim to have the answer but the truth is if you read posts in any online chronic barry group you’ll see people who have been ill for ten, twenty, thirty years or more. If anything really worked we’d know about it. What’s the point of spending lots of money and energy I don’t have on quack cures that don’t work? As Red said in The Shawshank Redemption, ‘Hope is a dangerous thing. Hope can drive a man insane.’

So it’s not surprising then that I effectively gave up and my mental health inevitably deteriorated. The last few months in particular felt hopeless and I’ve been on a downward spiral whose ultimate destination I feared and which was undoubtedly getting nearer. I’d like to talk more about these last few months and maybe will in the future, but it’s a period of self-destruction where I hit rock bottom and which has been quite personal. Chronic barry robs you of your health, your self-esteem and self-belief. You can’t work. You feel both useless and worthless and you may have people around you who don’t understand or who are unsympathetic. It’s been a long dark winter for me and deciding to start writing was almost the last throw of the dice for my sanity.

But they say that one good thing leads to another and I’ve found the decision to write this blog cathartic and it has already led to positive things, making new friends, feeling less isolated and having a renewed sense of hope and purpose as well as giving me the inspiration to write more. If sharing my experiences can help anyone (especially those with a chronic illness) improve their own mental health and feel less isolated then this blog will have been a success.

A lot of us feel invisible, not seen or heard and often dismissed. There are many of us in the same boat. The HMS Barry is full of people who feel lost and helpless but realising this can be the light at the end of the tunnel. The more of us that feel connected the less isolated we will feel. This blog then will mostly be about my struggle with the mental health issues of dealing with a life changing illness. But who knows where it might lead and you never know, in a few months I might indeed be giving you my recipes for kale smoothies or something else that I swear is helping my symptoms!

It’s important to remember that you don’t have to suffer in silence. There are people who know how you feel and who care, you may just not have met them yet. Next time I’m going to tell you about my wonderful chronic bazzer friends and how they are helping to pull me out of the darkness and whose support has been a lifeline.

If you would like to reach out or contact me about anything you can do so by emailing me at chronicbaz@gmail.com. You can also join our new Facebook group

I would love to hear from you and please don’t forget to subscribe below to receive notifications when new blog posts are published. Take care of yourself and always remember, you are not alone.