Hope

To those who saw 

me now and didn’t know my story, or the story of others with severe and very severe ME, I wouldn’t seem like I’m doing better. I’m bedbound and reliant on care to help me with most things. I can't sit upright, stand or walk. I go to the toilet in bed and wash in bed too. 

ME, I wouldn’t seem like I’m doing better. I’m bedbound and reliant on care to help me with most things. I can't sit upright, stand or walk. I go to the toilet in bed and wash in bed too. 

But 3 years since discharge of a 7 month admission following me becoming bedbound I have come so far. 

My quality of life IS better. It might not be good but it’s better. 

I can sit at an angle in bed for most of the day. 

My pain is better managed.

My light sensitivity is better. I no longer need to always wear either sunglasses inside or an eye mask. I tolerate my lamp being on full brightness. 

I can roll over and move my legs. 

I can do crafts. I have a craft business. 

What I hoped for is starting to happen. 

Clinging onto hope can be both so necessary and distressing. 

Hope can be so powerful. It drives my determination to persevere, it provides me strength and fuels my resilience. It is my reason to keep going. To keep fighting. Because I believe there will be better in life for me. Hope is a shining light in the darkness. It has guided me through some extremely tough times. Carrying that hope helps me flourish. 

But hope can also be extremely hard. It can be tough to remain hopeful when the future is uncertain. Particularly when you’ve felt disappointment before. Or fear it. 

Hoping things get better is quite easy for me. I’ll always hope for that even if occasionally I question the reality. Hoping I can sustain the improvement is what’s terrifying. The fear of losing everything again. It’s something I can’t bear to think about yet I can’t live in denial of. 

But to me, hope is not about denying my realities and the challenges I face at this moment, but the belief that I will one day no longer face them at least to this severity. So I have to try and balance all these feelings. And remind myself I will get to live life one day. And slowly that’s coming to fruition. 

I am getting there. One step at a time. Well… maybe not steps yet. But I will get to that point. That’s not even something I hope for, it’s something I wholly believe will happen. 

The passage of time...

Six years. Six long years. I wondered last year, at the anniversary of 5 years of ME how I could sum it up, this year I’m left wondering even more. It's so much time to have spent ill (though not as long as many others have spent). 2190 days. 52560 hours. And way too many seconds.

How can one explain the way time passes by in this situation? 

Perception of time is so interesting. Time ticks by, it goes so slowly. The painful seconds, the days I wish to sleep just trying to get through an hour or minute at a time, where I wish for time to just pass when it drags. I feel like I’m stuck in it, an endless abyss. But it is an ever-flowing river of events. An invisible force dictating life. And whilst it goes so slow in some moments it also moves so quickly. Days blur together, time passes and suddenly I blink and another year has gone. Another year lost to this cruel illness. The seasons have passed outside of my closed curtains. 

Time is irreversible and moments cannot be undone once they pass. I know that this, M.E., will forever be in my story, and I can’t undo what’s been done or get these years back. Although I do hope I get to make the most of the rest of my life. And I feel ME will have helped me do that. It is my historical marker that’s shaped the narrative of my life. 

I often think about how it would be easier to know when this ends. In my head, the date doesn’t matter it’s just easier than being left to wonder how infinite this is. Although I’m not sure if it would be any easier in reality. Time is a linear path, it stretches indefinitely and that is terrifying. I’m left contemplating how long this may be my life. When will I will get better? 

Whilst I described the indefinite nature of time as terrifying it’s also freeing, knowing it’s not over yet. I value my future that I’m determined to make it to. To get to experience all the things I’m desperate for. I will make the absolute best of every second. And I try my best to do that now as well. I value the time I’ve got. The little moments. The fleeting joy of the quiet. The days after a bad PEM episode when I feel like I can breathe again after being underwater. When if even for only a temporary time I can look back and realise there has been some improvement and the hope it fills me with. When I think of how proud of myself I should be. 

So I will keep going. Keep spending my time getting by. I will keep looking forward and also experiencing the now. 

Time didn’t stop when I got ill, it’s something that continues. Time is infinite, it keeps moving and so will my life. I will keep evolving with time. And I hope I will improve with time. 

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. 

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 

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.