Reflections on 3 Years of Severe ME

 A picture of me at the start of my 7
month admission 3 years ago

 Today 3 years ago I became bed-bound with Severe/Very Severe ME. 

For three years I have laid in bed,

For three years I have needed care,

For three years I have been trapped in one room, in bed, for months at a time,

For three years I have been unable to walk, 

For three years I have needed medical help but have been traumatised by the experiences, left worse than before,

For three years I have wondered when I will get better.

Another year of ME. Another year of suffering. Another year of waiting and needing a cure or at least some treatment. Another year I’ve missed out on living. Another diagnosis to add on. 

I often feel like I’m just counting the days. Counting the events I miss. All the things I can’t do. Wondering how I can catch up in life. A depressing outlook I know. It’s not something I think every day but it’s natural for it to cross the mind occasionally, particularly around anniversaries. 

It's hard to know what to think when it comes to anniversaries like these. And it's hard to find words to express those thoughts. It's all so much to process, the illness itself but also the trauma of the treatment I went through. 

Naturally, grief is one of the big thoughts. I grieve the life I could have had without illness and even the limited life I was living with moderate ME. 

I feel anger at the world, and at the professionals who had the wrong type of impact on my illness. 

I have guilt for how this has not only affected me but also my family. 

And I have questions, so many questions! Why me?! But why anyone?

I also feel proud of my survival, of what I have learnt and how I have grown.

I am grateful for the support I have and the friends I have made and getting closer to family. How I’ve learnt to value quality of life (limiting symptom severity) over productivity and learnt to pace. I’m grateful I have started to make improvements for the first time in this period. 

There's a lot of dual emotions when it comes to chronic illness: 

I have learnt both how fragile life is and how strong and resilient I am. 

I have a lot of feelings about the word resilience and others like bravery. I'm not choosing to go through this, many times I crumble under the weight but I think resilience can still manifest even when you're being forced through something. It is not just being able to bounce back but also to adapt in the face of adversity. 

I have felt so isolated at times and at others so surrounded by love in this community.

I have lost so many friends through this and lost opportunities for social connections yet I've found even more powerful connections online. 

I have felt so silenced but that has blossomed into sharing so much and advocating. 

Medical professionals made me quiet, I lost my voice and felt belittled. I have made myself loud by sharing my story and advocating for better understanding.   

I have felt so hopeless yet so hopeful 

At times I have felt I will never get better, and at others I've been so sure I will. I have seen the power that pacing can have when privilege allows for it. And I have started to improve myself. 

I have been put through untold hell and whilst I am not out the other side yet I am emerging. It has taken every ounce of strength I have to survive. More than I ever knew I could have, more than anyone should ever need. But I've got it. 

A year ago I wrote my post 'It's all for that 15-year-old girl' The words are still more current than I thought they would be. It is often still a struggle, it remains hard. 

”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”

I am still rebuilding myself and I will always carry on for her. 

The words that will always be true and that I'm glad I still remember

“They may have power but we are stronger than them.” 

And we are. They took away my power for a good while there but I fought for it back, and now I’m stronger than ever. 

This life is like a tightrope higher than you can imagine...

How can we walk across it and balance all that we need to? Physically, mentally, medical treatment, trying to live and do what we can, and family-wise. 

How do we balance doing anything vs PEM? Activity levels and resting (or being completely unable to do any activity) vs muscle loss from lack of movement. Medication to relieve symptoms vs side effects. Illness vs its comorbidities.  

It feels impossible and there is such a long fall. That is ME (and many other illnesses). 

We all make mistakes in life. Some big, some small, it’s how we learn. But no matter how many catastrophic mistakes I make with ME and pacing I can’t seem to learn much because I remain in the same impossible situation. Walking the same tightrope with the ability to tumble further than I could ever imagine. 

I am really struggling at the moment to balance the different aspects of my life. 

This isn't something new but it's really getting to me at the moment that I truly can't win. 

My illnesses all need different management that all contradict each other.  How do I prioritise which of these debilitating things to try and help?  “if you don't use it, you lose it” but if I try to use my muscles I lose the little functioning I have. I've had to accept knowing I'm losing it. 

How do I balance my mental health vs my physical health? And it isn’t as simple as just letting one of them win. Leaving my mental health to suffer also affects my physical health as emotions are physically draining. But neglecting my physical health and doing too much leaves me in a worse of mental state. 

Being bedbound has negative effects on so many areas of physical health but there’s no choice about it. 

POTS can sometimes be helped by movement, subluxing joints need stronger muscles to support them, and the longer I lay in bed the more it happens, but I'm not physically well enough for physio. 

Gastroparesis isn't going to be helped by eating my meals at a reclined angle and being immobile but again there's no choice. I'm unable to even try to move around. 

The need for medical appointments vs the crash they bring. 

Sometimes it's the classic 'given an inch, takes a mile'. Not deliberately but because we have to. 

We make all make mistakes in life. Some big, some small, it’s how we learn. But no matter how many catastrophic mistakes I make with ME and pacing I can’t seem to learn much because I remain in the same impossible situation. Walking the same tightrope with the ability to tumble further than I could ever imagine. 

When improvements happen at snails pace and deterioration can happen in an instant…

It’s like watching in the third person as life snowballs and the symptoms build. The months and years of self-management, pacing and trying desperately to improve, the small increments it took, crumble as life slips away. 

Recovery, and illness, are not linear. A statement said time and time again but that does not ease the pain it causes. It’s a winding road with many twists and turns in the path ahead, and many plateaus and long-winded bits, but also those already conquered. We can forget how far we have come. Because you can come such a long way and still have a huge climb ahead of you. But it isn’t just the climbs… it’s the falls. The little trips or straight falling off the edge of the cliff.  

Some are lucky and don’t have that and make regular improvements, likely very slowly, or in some cases remission even if it can take years. Some people only deteriorate on their downhill path as it slowly happens, their progressive illness overtakes them, and some people climb the mountain only to drop off the edge of it.

@diaryofachronie_ did a fantastic post recently about the heartbreak of deterioration. The internal conflicts. The grieving, torment, wondering, dreaming, hoping and soul destruction. And it really is soul-destroying. 

It may happen slowly over time, but many times it can be triggered truly in an instant. How it can continuously happen quicker than we can keep up with or process. 

I get both, two years of gradual decline and in the last year the big ones I didn’t recover from were mostly viruses.

There are times I took a chance for joy and it bit back. Or got too excited with possible activity levels and bit off more than I could chew. Those times I could blame myself. But it’s the cruelty of the illness. 

All after it took so long to get anywhere with pacing.

Living with low quality of life is incredibly hard. There is a lot to grieve and wish for. Then simultaneously either declining or desperately trying to hold onto the last of our quality of life. The balance of trying to avoid deterioration is terrifying. Wondering how soon you will be doing those activities again whilst also knowing you may be doing even less eventually. Watching your remaining quality slip away is horrifying. I’ve felt frozen in time watching it happen. Wondering how far it will go before it stops. One after another it’s overwhelming and all-consuming. No time to catch up and accept. 

Constantly trying to adjust to new limits, sometimes the deterioration happens before we can even process it. Hit when coming up for air. 

We are pushed by health professionals, family and friends, told to take all sorts of risks and given suggestions of harmful therapies. And then scorned for not doing what they want and blamed for getting worse when we follow their advice or are forced into it.

Living this life and deteriorating is hard beyond belief to cope with.  And when there's nothing you can do other than try and float to stay above the surface of the crashing waves, the water that takes every attempt to drown us - we survive, in the face of it all.

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 

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.