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.