What happened when a virus hit and I developed M.E (Myalgic Encephalomyelitis) and POTS (Postural Orthostatic Tachycardia Syndrome......

Before I dive in and share some insights on the journey I had with M.E, I just want to start with this. If you have M.E. POTS or Long Covid or a similar autoimmine / autonomic dysfunction / condition and are in the midst of it - please have hope, faith and belief. Believe that better health / recovery is possible. Find inspiration and motivation to keep you going (through others who have recovered) and NEVER EVER GIVE UP!!

So. Here's where my story with M.E officially started (but in reality life had set the stage for it to be able to take hold many years before- another story for another time....)

My life turned on its axis in January 2014. I contracted a virus which ravaged every organ and function in my body and left me with Myalgic Encephalomyelitis (commonly known as M.E). I went from being a 10k runner, a fitness & food fanatic, a dedicated NHS health improvement practitioner and DJ and a general hyperactive, fun-loving social person to someone who couldn't speak or stand and was barely able to tolerate any exertion, food, light or sounds.

Initially I was scared, confused - absolutely petrified. I pushed against it – thinking it would just go eventually. Like recovery from the flu or glandular fever or any other virus I'd had. And boy - I'd had a lot!

I knew soon enough that it wasn’t an ordinary virus – so I mentioned M.E to doctor about 4 weeks in. My partner at the time was the first one to say out loud "do you think it's M.E?" as he'd had a cousin who had M.E for many years and knew the hallmarks. I half knew it was but I flew off the handle at the very mention of it because for me - M.E would be THE worst health condition to ever get. Because of my love for sport and fitness and perpetual motion.

I definitely felt like I was dying at some points. I also wanted to die at others because it was so hellish being in my body. The symptoms were so excruciatingly painful in so many aspects. I kept asking to be put in a coma to escape the trauma of how I was feeling. I still feel to this day that a heavy dose of sedation for a while could have helped but hey... another story for another day....

My symptoms were endless. I couldn’t talk, listen, get up, have a shower. If I did allow someone round, I would just sweat and shake and couldn’t even stand or hold a conversation.

It affected my heart and entire cardiovascular function, my thyroid tanked, my hair fell out, I could not stand the light, even sunlight. I couldn't look at my iPad screen or TV.

I became so sensitive to noise and had to switch off all the notifications on my phone and iPad as any little noise would startle me and make my heart jump and adrenals pump out even more adrenaline. Simply from a 'you've got a message' alert.

I had tremors in hands and legs, feelings of low blood sugar all the time, feeling faint, feeling like my was brain twisting inside my skull. I could literally feel it twisting. And then the night sweats. Man. I sweated through the sheets a couple of times a night.

I had weakness all over my body but especially in my muscles and I lost power in my left arm. I developed difficulty reading and writing because my vision was affected – everything was blurry.

I also developed a million food allergies and chemical sensitives and was hyper sensitive to anything I ate, put on my skin or even breathed in in the atmosphere.

I used to run 10k on a weekend and exercise 5 days out of 7 and was super fit. Now I found even getting up to shower a difficult and taxing and exhausting task.

I distinctly remember lying on the sofa and looking at a pot of herbal tea I’d put a gargantuan effort to stand and make and I simply did not have the energy to lift myself up to lean forward and pour it. That moment broke me. I knew something was deeply wrong.

The reason I write this is for anyone reading this who is also experiencing the same thing. That I understand and empathise with what you're going through. It's hellish and horrendous and you do not need to just "keep positive" as many a friend would trot out as their caring line when I was in this state.

Acknowledge where you're at. Don't deny the reality of it. Please most of all find a way to give yourself complete and utter rest. Mentally and physically. I will share in a later blog post about the very big and bold changes and life decisions I made 2 years after developing M.E that lead to me getting back to running and being pretty much normal functioning. Whatever normal is.....

In the next blog post, I'll cover what I tried initially in terms of treatments and who I worked with and where I went and what I used.

Let me know in the comments below if this resonated with you. And also - what you need in order to support you going forward. I'll happily share more of my story if it helps just one person out get on the track to healing and better health.

Big Love

Jo

💚

PS. I wrote this mantra up on a blackboard and it really helped me just lean into the bad times, resting and knowing that it won’t last….

Float past tension and fear.

Float past unwelcome suggestions

Float - don’t fight.

Accept

And let more time pass.