5 years of ME and counting...

Five years of ME and I don’t know what to say - because there is so much to say about ME and Severe ME but never enough words for it all. Never powerful enough words. There’s the fight for diagnosis, the gaslighting and abuse from medical professionals, the debilitating symptoms and all it takes.  

ME has so many sides: severity, fluctuations, symptoms, changes, management, people and community. The community is one of the rare positives. 5 years ago I woke up ill one day (shingles) and never got better. And over those 5 years so much has happened.   

I’m someone who has spent the majority of their illness journey, and consistently the last two years, getting worse. I’ve bounced around the severities a bit, started housebound, then Mild for a short time, housebound again, Moderate and then Severe, 24/7 bed bound and I now fulfil the NICE Very Severe ME category. Deteriorations mostly due to GET and inappropriate treatment, plus almost instant deteriorations like colds, covid, vaccines and the accident I had.    

It’s taken my schooling, GCSEs, A levels, teenage years, friendships, parties, sports, hobbies, good experiences, joy and it’s even taken types of bad experiences away from me, but ones that would have taught me things as well as ones I was glad to escape, if only it could have been in a different way.  It’s taken away my ability to walk, sit upright, see people, my independence, ability to do my own personal cares or have a hug. It’s taken my sense of self and many times the light I had inside me. It’s ripped me to shreds and torn me apart. That’s mentally and physically.  

The term “Mild” ME is a trick given it’s a huge loss of functioning, still unimaginable to most. ME is a severe illness. I’ve has 5 years of daily debilitating symptoms including the year I survived school with it. But the last two years have been on another level. I’ve had to face an unbelievable amount, a constant torrent of symptoms that I’m not going into on this post.    

It’s given me pain, suffering, trauma and mental health struggles. Then community, better friends than I had and appreciation for smaller things.  

The last 5 years have been incomprehensible to me let alone others. It has been overwhelming and terrifying. How much of a landslide PEM and this illness is as my life has snowballed out of control until I've ended near the bottom of the scale (though most definitely not the very bottom). Trapped in this bed and trapped in my own body - fighting to live but getting worse regardless. 

One thing I can say is that in these 5 years, as my health has been on a mostly downward decline, my acceptance has grown. My community and support has grown. The little moments and getting to do activities feel even more special. Those things don’t take away the rest and I can’t say I’m grateful for the illness, I’m very definitely not and would take it all back to feel healthy. But I am grateful for the community and the understanding it’s given me of the world. Grateful that I’ve grown as a person and found incredible people who I value so much. 

It might sound ridiculous to say that my understanding of how to manage the illness has grown when I’ve been getting worse. However it’s in getting worse, this community and finally finding medical professionals that are helpful, that has shown me the truth of this illness and how to manage it.  

My journey with ME and Very Severe ME is unfortunately not over yet, I’m sure there will be many more twists and turns on what feels like an endless road, but it’s nowhere near as long as so many have had.

It’s been 5 years this month since I got ill with ME

It’s been 5 years this month since I got ill with ME. And in those 5 years so much has happened. 

I’ve had to face the crushing weight of these symptoms, feeling like my head is underwater and I’m drowning, the days of having to fight for every breath. Delirious due to the exhaustion. Paralysis, head splitting migraines, muscle spasms and myoclonic jerks. Pain. Light and noise literally hurting. 

Sometimes something suddenly takes me back. I don’t remember what it was like to be healthy, but I remember who I was.

The girl who had only just turned 13. ME has ripped everything away from me, including my sense of self, I’m not the same person.

That person is missing, one of the #millionsmissing

Time has slipped by me whilst also feeling like I’m frozen in it, the clock slowly ticking by. Really it’s that it’s like my life froze and yet time continued around me. With me missing from it.

ME sufferers are known as the millions missing because even at a mild level people are missing so much. I’m missing from the classroom, A Levels, from sleep overs, sports, parties and relationships. But also

missing from my dining table, missing from family days, dinners and the sofa.

The healthy photos are the months, weeks and even days before I got ill. I even had shingles in some of these pictures. And like the lyrics say, that girl is long gone. It’s incredibly eerie to look at them knowing that and how much my life changed and everything that 13 year old was unaware of. 

Unaware of the systematic abuse of this large group of people or the neglect experienced. And then that 13 year old was thrown into that group. Please educate about ME - I was a child (although a child who knew about Cancer,

MS, Parkinson’s, Alzheimer’s etc) but there are far far to many adults with either no knowledge of ME or only harmful disinformation. 

Most importantly, FUND RESEARCH and for treatments. I’ve only had this illness for 5 years (yes only in comparison to others) but there’s been no progression, plenty who have had it decades say the same.

Watch a video I made here 

I never knew about Severe and Very Severe ME or the more severe symptoms people can experience with ME. Neither did my doctors...

ME has a very wide spectrum of severity and symptoms. Many scales don’t go severe enough to reach the depths people experience, leaving out quite a large and definitely important percentage of people. Or they don’t properly distinguish enough between the severities. Which admittedly is hard with such a wide breadth and range of symptoms. But it tends to be the severe end that isn’t distinguished - arguably the people who need clear definitions the most. 

No recognition of the difference between those mostly housebound, housebound, mostly bedbound, and 100% bedbound. Those four generally end up as two categories, sometimes just one! All under the same Severe ME label, making them appear the same severity.  And that’s not to make it a competition but about accuracy. Because if doctors have ever heard of severe ME (and many haven’t), you’re lucky they might think mostly housebound but not as severe as it gets or needs to be recognised. They have to know the severity a patient is at and how to act appropriately!

I didn’t easily find anything that reflected my reality until joining this community. All I saw were things like “what are the 7 symptoms of CFS”. Nothing about the paralysis and the terrifying symptoms, nothing about the people far worse than me, unable to speak or swallow. Nothing to make my Dr understand that this was ME just a severe manifestation, something they hadn’t ever seen before. Instead, I, like so many other Severe and Very Severe ME patients ended up with a misdiagnosis of FND because they didn’t recognise the symptoms as ME - which they think is just fatigue. 

Sometimes I think some people are scared to talk or learn about different severities due to the very real and present fear of worsening. It often feels like many turn their back on this side of the illness particularly when people actively unfollow for sharing the truth. And most health professionals don’t address it or warn people, particularly since many of us ended up Severe due to their mistreatment and GET. 

Even charities fall short, mentioning the effect something has on the housebound but not mentioning the greater effect on the bedbound.

“It is important to realise there’s a severe end to the spectrum of ME and that the average GP may only see one case in his entire life, and these cases are almost unique”  - Dr Nigel Speight

It’s no wonder they are uneducated but they have to learn. And there has to be more of an effort to educate.

So please do talk about the reality of Severe ME. It’s so important because Severe and Very Severe ME patients are often missed in healthcare settings, in research, by some charities, by some of the advocacy accounts with the highest followings and missing most from living. Many unable to speak up themselves or even access this community. The people who need the most support and awareness.  

Help educate, help people understand. Empower ME patients by sharing knowledge. Make your friends, family and anyone, medical professionals if you can, aware and of the true extent it can be for some. 

Had I known three years ago what Severe/Very Severe ME was, the symptoms rarely spoken about that I experienced, my story may have been very different. My diagnosis journey may have been very different. My quality of life may have ended up very different - in better ways. It’s crucial it can be recognised quickly to avoid further worsening. It can be life or death!