A different path...

Chronic illness means missing out. And it means doing things differently or even entirely different things. It means doing things in a different order. And that’s okay. Actually, it’s okay to do things in any order you want at any time. 

However, with illness, it’s mostly because the choice is taken away from you. That’s why being at a different place or taking a different path matters to you. And that’s why it’s a loss. Making a choice to do something different or at a different time because you want to, is incredibly different to having that choice stripped from you. It’s a huge thing to grieve. 

Desperately wanting to be beside those your age in doing whatever they do at your age is an incredibly hard thing. Especially when there is nothing you can do about it. 

It’s something I’m really struggling with right now. The nature of chronic illness, and life, means we constantly go through a cycle of grief. I can be in the acceptance stage for a while, the majority of this post was all positive and about acceptance when I wrote it a while ago. But things have triggered that grief again. 

I’m grieving for my past, present and future. I’m grieving the 16-year-old me who didn’t get her GCSEs and laid in a hospital bed during that time, and the 18-year-old me who didn’t get her A levels and isn’t going off to university this week. I’m grieving the life I’ve lost, the future that’s different to what I imagined. I’m grieving the loss of relationships, the past ones, the ones changing now and the ones that never get to start. I’m grieving the chance to go out out, have social time, family time, dating, making new relationships. Being a teenager. 

But we find a new path. A new place in life. New people have also made a big difference. The people I talk to now are in similar situations. I don’t talk to many school friends I talk to chronic illness friends. That’s also made it a lot easier to accept my new journey. I’m generally not comparing myself and where I am (not that it’s good to do that anyway, but it’s also natural if you do). It’s also natural if you’re talking to someone about what they’ve been up to and it’s something you desperately want to but can’t do that’s very upsetting. 

I have altered aspirations. But I keep those that I had, my hopes and dreams for if I do get better in the back of my mind. It’s not letting go of that path completely. It’s just hoping I can join that path again further along the line. However this is a difficult mindset. And I’m very aware that although I may recover and be able to do things, my life will remain different to what I had hoped for and I will be trying to catch up. 

There’s nothing we can do so acceptance can be the best thing for me. I don’t have the energy to grieve anymore, it makes my illness worse due to how exhausting it is. But it’s a very fine line. I’ve spent weeks if not months balancing the line of distraction vs feeling my emotions, I needed to be in a physically better place. However this week it’s continuously been added to and has overflowed my cup and I’m really having to feel it. 

I’m someone who would give up everything it’s taught me to have a little bit better health again. But there are things I’m grateful that it’s brought me, this community and friends, more understanding and recognition of struggles. 

Keep going. We can do this. To me, it feels very hard right now but I can do it and I know you can too. One step at a 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.