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. 

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.