It's not just what you "can" do its what you should do, what you need to do survive or have quality of life

It's not a black or white you can or can’t do something situation with chronic illness and disability. It has a grey area (like most things but people seem to forget that about this). We know not everything that is possible to do should be done, you can commit a crime but you shouldn’t. You can choose to do something highly dangerous, but should you? 

With chronic illness and disability, there is a lot we can’t physically do. Then there is the stuff we could push to do that would be incredibly harmful for us. So “should you do this?” “is it okay for your health to do this?” would be a far more appropriate question than “can you do it?“ or the accusatory “but you could do it?”  Instead, we are often jumped at for not doing things we in some way possibly could.

The reality is not doing an activity with a harmful effect is what allows us to do another activity. What allows quality of life. And other people should remember that nothing happens in isolation. Having to give up every other activity, to do one thing, is not sustainable. We have to prioritise the things we want to do as they can’t all be done, which means not doing certain things.

There are things I can’t do at all, things I can, and things that trying causes devastating harm, things I may occasionally push for despite knowing it’s irresponsible, and I suffer big time but on occasion may be worth it. I can’t stand at all (and yes I have been pushed to try, I won’t go into the trauma, I definitely can’t stand), I could physically be hoisted out of bed each day, it would be horrible and leave me physically unable to do anything else because doing it once does that and I lose my quality of life.

It’s not negative to say no to doing things to protect your health. You don’t have to “test” the harm it does repeatedly, or ever. You know your body and that’s what should be trusted.

What I choose to do should never be questioned by someone else. Never be suggested I’m not trying hard enough because I’m choosing to respect my body’s needs and instead choosing other activities. Or that because I may choose something that brings some joy instead of something someone else wants it to be, sees it as me “wasting” my energy. ‬  My choice is to do everything I can to not get worse so that I don’t end up with more things added to my physically impossible list. A choice of survival. 

What I choose to do should never be questioned by someone else. Never be suggested I’m not trying hard enough because I’m choosing to respect my body’s needs and instead choosing other activities. Or that because I may choose something that brings some joy instead of something someone else wants it to be, sees it as me “wasting” my energy. ‬  My choice is to do everything I can to not get worse so that I don’t end up with more things added to my physically impossible list. A choice of survival. 

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!

It's all for that 15 year old girl

It’s all for that 15 year old girl,

The girl who 2 years ago found herself laying scared in a hospital bed. Who had no idea what she was in for, or how scared she should actually be. She didn’t know she would be broken by them. The girl who two years later is laying in a hospital-style bed at home, even worse than before. 

It wasn’t that she gave up or caved in. Wasn’t weak. She tried to fight till she shattered under their weight. Till she learned her words were not enough against the power they had. Till she lost her voice. Till the professionals made her feel she knew nothing. Questioning everything. Small and insignificant. 

Experiencing it was like watching in the third person - let alone when the memories whirl around my brain and I’m back in that room. A mix of words, a mix of pain. The barrage of it and I feel like her again. Measly, imprisoned, desperate to say no but unable to, or saying it and ignored. They froze her strength. Trapped it away like she was trapped by the hospital walls. 

The fight of advocacy was a thinner line than she knew. The risks of saying no were huge. But she did her best. Learnt to do it through the hardest of ways. Tried to balance on the tightrope of pleasing them and stopping harm to her. She did everything right. She does not need to feel at fault or to blame. And now two years later I am finally beginning to win for her. Finally starting to get to the other side of their looming doom. 

One day, I hope those doctors realise the impact they had on us. How destructive they were to our families and us when using their misplaced power. I hope they learn how we hear their words for years and feel their actions. Hope the memories hit them like a brick and overwhelm them instead of me. I hope one day it swirls around their head instead of mine. It’s for them to feel regret, not for me. 

For now, I’m rebuilding myself away from them - for her, for the me that exists now and for a future where I hope to never experience this again. Each day is for the 15 year old girl who laid scared in those hospitals. When those memories crush me under the weight, I carry on for her. I carry on for my mum who has lifted the weight off me whilst crumbling under it herself. I carry on for every person who never got the chance to escape the hospital walls. 

Things may be overwhelming for me right now but I’m slowly healing. No one should ever have to, but I am. 

They may have power but we are stronger than them.

I wish

I wish I didn’t spend the day waiting for darkness to fall, 

I wish I didn’t spend the summer waiting for the cool. 

I wish I could have the curtains open and see the sky,
I wish I could watch the birds fly. 

I wish I could let the light in, 
I wish I didn’t need it dim. 

I wish I could see the flowers grow,
I wish I could see the trees that blow.

I wish the sound of singing or the birds brought me joy instead of pain,
I wish ME was not a ball and chain.

I wish laughing too hard still just brought a sore face,
I wish even my emotions, didn’t have to be paced. 

I wish I could watch as the seasons change, 
I wish my life had not been rearranged. 

I wish I could see a friend,
I wish others could comprehend.   

I wish for experiences of my age, 
I wish I was living my teenage stage. 

I wish my life was something other than a fight, 
I wish this illness did not have such spite. 

I wish for new memories on the days I’m full of grief, 
I wish I did not fall victim to this thief. 

Severe ME.

But I’m thankful I can join this community and alliance,
And with that, we have defiance.  

So, 
I wish for a future my future,

I wish for relief for us all.

Severe M.E. - When life doesn't just fade away from around me, I further fade away from it.

There isn’t a picture I can take to show Severe ME or of my worst. And I don’t think what I can say can reflect the truth. These words seem dramatic pale in comparison to reality. I continuously find myself at a loss for words over the horror of Severe ME - knowing full well I am not the worst, yet it still takes me by surprise as it creeps up and smothers me.

It's Severe ME awareness day/week, the 8th of August. Next month I will have been bed bound for two years and reliant on a hoist for ocasional transfers, having to do everything in bed, living behind glasses and curtains. July, after Covid, is the severest I’ve ever been. I can't believe how far I've deteriorated in this year.

To try and describe Severe ME, and the many symptoms that fluctuate would be like my head is underwater, often unable to understand words and things have faded away as life around my body passes by. Delirious due to the exhaustion, too drowsy to be aware yet not able to sleep. A migraine that feels as if my head is being squeezed by a vice and how it brings intense nausea and painful light sensitivity that burns my eyes. It’s the crushing weight of symptoms. When I can hardly think and trying makes me crash. When every breath is a fight that drains my energy. How I cry from how bad the sound of a TV in another room is. The words I’m unable to speak, trapped in my brain and incoherent. The messages I'm unable to send, people's lives I'm unable to follow as my life and world shrinks more.

When life doesn’t just fade away from around me, I further fade away from it. Trapped in this bed and trapped in my own body - fighting to speak and to move, but my body only imprisons more. An internal war that I have to take lying down (literally).

It has been overwhelming and terrifying. How much of a landslide PEM and this illness is as my life snowballs out of control until I've ended near the bottom of the scale. But I know I am nowhere near the worst. I know how much worse it can get. I’m mostly able to share and find comfort with others. 

But please talk about the severely and very severely affected, this illness is a horror show that many are unable to express, and those who aren’t here.

For me M.E. is:

To spend every minute of every day plagued by debilitating symptoms is incomprehensible to most. To be bed bound, unable to shower for months or years, to tolerate the curtains being opened or long conversations. But that’s what it is to have Myalgic Encephalomyelitis particularly on the severe end, and there are many much worse. 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 can’t pick a photo that can truly sum up ME and that’s because ME isn’t just one photo, it’s every moment of every day. It’s all these symptoms and so much more. ME has a million faces just for me, let alone all the others. And I can’t show you the pain, can’t show you all the symptoms. I don’t have photos of my worst moments, those moments I am unable to take a photo, unable to think, talk or open my eyes. Fighting to stay conscious as I’m trapped in a body that won’t co-operate and starts to shut down.

These descriptions may seem dramatic but they aren’t, and the reality is that words like ‘pain’ ‘fatigue’ just aren’t enough to convey the regality, this is the best I can try to describe them. Fatigue is not simply tiredness and my perception of pain has changed so much. I debated the order but I can’t rank them in order of detrimental effect. They all coexist, the symptoms hit all at once, in PEM or on a general day, there’s never just one, there’s always multiple and I’m suffocating under this pile of symptoms as it consumes me, desperately wanting to break free of it, but I can’t. Alive but not living. 

ME is debilitating beyond imagination, like being imprisoned by your body. And it is scorned and ignored. Our fight is silent since it’s often hidden, and we remain the #millionsmissing so today on #meawarenessday (and on this account in general) we share in the hopes someone may finally listen. On here most are aware of what ME is, I hope if you weren’t you have learnt something today. For those feeling heavy from the content shared, take care of yourself, and everyone. 

If you have ME you are not alone, I’m here with anyone wanting my support 💙