MYLDN 1895

Yes some people are still wearing masks. Not many but I am one of them. This week marks the 4th anniversary since I got Covid and I have been sick ever since. A year in I developed full blown CFS and since then I had 3 or 4 partial recoveries only to relapse further each time. Last year rendered me housebound as my condition continued to deteriorate sending deeper and deeper into the chronic illness hole. And the more I tried to burrow out the further down it sent me, each new depth of hell more horrendous than the last. Bummer huh? Well don’t worry, it gets cheerier..

I tried everything under the sun to get better. And nothing worked. I was starting to give up hope of ever recovering and had become a physical, mental and emotional mess. I lived in fear of doing anything because everything caused my symptoms to flare up. It was pretty grim. And then in October I joined a program called CFS recovery which treats Long covid/M.E/CFS as a hypersensitive nervous system issue and through brain retraining they teach you how to regulate your nervous system which has essentially got stuck in survival mode. In an attempt to keep you safe your brain has signalled the body to shut down and stop you from doing anything. It is not your body attacking you. It is in fact your brain in over-protective mode. It is ultimately an act of love. Ahh, bless.

It’s a shame it’s been such a friggin ball ache as have found it utterly fascinating. And here comes the sciency bit..

Basically you have to convince your brain you are not in danger by not responding with fear and panic to the symptoms that it is actually generating. It’s a difficult thing to get your head around. No wonder it’s such a misunderstood condition. And the symptoms aren’t psychosomatic, they’re very real indeed . The nervous system is in control of most of our bodily functions and when it thinks it’s under attack it renders anything it considers non-essential inoperable. It doesn’t care if it makes your suffer, it doesn’t care if it makes you unhappy. It doesn’t care if you can’t work or see your friends. It just has one mission: to keep you alive and it does not care about anything else.

After a long period of reconditioning your brain you create new neural pathways and it eventually signals the nervous system to come out of fight or flight. This process can take anything between months and years and you have to go through multiple “progress cycles” where your symptoms flare up even more and you have to pull back activity whilst your nervous system recalibrates. It’s completely nuts how it works but it does work.

Since I joined this programme I have gone from being couchbound and unable to do even the most basic things to walking 40 minutes a day. I can socialise again and am back on public transport. I am a long way from being able to live a normal life and there will be lot of ups and downs ahead but eventually I will be fully recovered. So what will I do then?

I can now see my life as I previously lived it was completely unsustainable and I probably would’ve always crashed and burned at some point. Covid pushed me over the edge but it possibly also saved my life and that is the way I am now choosing to see it.

There are specific types of people that get disregulated nervous system disorders. They call them Type A personalities. Perfectionists. People pleasers. People that push themselves till they break. I was one of those people. I only ever stopped when I hit the wall and before that I was always running around like a blue arsed fly. It was exciting but utterly exhausting. And no, flies don’t run. They fly. Obvs.

So even though I had been desperate to return to my previous existence I can now see how unhealthy it was and I now wish for something else. I am for the first time looking forwards instead of backwards. But that is because I now have hope. Thanks to this program I can now see a life ahead of all of this. And I can now see that this will make me a more resilient person than I ever was. Chronic illness will make you weaker but it will also make you stronger.

I know it might not sound like it but I am one of the lucky ones. I found a treatment that is working but I am just one of 65 million worldwide dealing with this debilitating condition and many of them are suffering without help or hope. It was long covid awareness last week, which ironically no-one who didn’t have it would’ve noticed. We are all the forgotten casualties of a war everyone thinks is over but please spare a thought for those who are still on the battlefield, fighting to get their lives back.