I have been trying to write a post for months. Where once I had so much to say – some would argue too much – now, words no longer come. They stumble, get stuck in my throat, or in the case of writing a post, my fingers. I miss being able to write. I miss words, and books, and libraries. I miss loving words, and books, and libraries.
Now, I only have nothingness.
Bone weary exhaustion has brought with it a vacuum inside my brain.
A sea of nothingness.
My brain that no longer has capacity to love the words that used to fill my soul so much.
When your cells are unable to make energy to think, to walk, to talk, it is hard to put any cohesive sentence onto paper.
I miss writing so much.
Finding something to say is like looking for words in a lake full of tar. It feels stunted, gloopy, nauseating, impossible.
Since my ME/CFS diagnosis in 2021, I have struggled to come to terms with the unending nature of it. There is no cure, no management plan, no end in sight, very little research, a medical board reluctant to change the outdated and harmful guidelines for ME/CFS despite recommendations to do so 4 years ago.
Instead, having lost my team of doctors to relocation, or burnout, I now have a line of doctors who honestly know nothing about ME/CFS except to mask their lack of knowledge (or willingness to learn) by implying or outright saying it is all in my head, or those who genuinely want to help, but don’t know how.
It can all feel overwhelming and hopeless, if I let it.
We moved a year ago next week. I desperately did not want to move from the house that I designed and decorated, that fit our family perfectly, that had become my sanctuary. Sadly, there was no choice. I did my best to cope. I failed.
The fallout has been catastrophic for me. The stress caused increased fatigue, emotional dysregulation and brain fog. Most catastrophic though? I lost my words.
My daily routine, if you can actually call it that, is one of monotony and hermitism (I made that word up), and not much wordage.
I long to be interesting, living an interesting life, surrounded by interesting books that I have read and having interesting things to say. Instead, I have nothing.
How does one make sense of a world that has become a well trodden path from the bed to the sofa and sometimes, on the good days, out to the craft room in the garden and back again?
I have no idea. But everyday I do truly try to find some meaning in it all.
Sometimes, though, I cannot. The abject fatigue affecting every system in my body means I am just sitting on the sofa, staring at the wall. On those days, depression hits with full impact and life rapidly becomes meaningless. Those days are the days the people around me worry.
Other days, though, I am able to rouse from bed, go downstairs and at least fool myself into thinking I have something to contribute, even if it is in the form of only being able to love my family so hard that day. That counts as meaningful, right?
Today, I am trying to write this post. I miss writing so much, but my brain is tired, and it tells me that there is no point, that there is so much noise that who would want to read it anyway.
The truth is, I have been trying to write it for months and I don’t want it to sound full of self pity, yet somehow I know it does. Is it self pity, though, or grief at a vibrant life now lost seemingly forever? I am going with grief. There is no time limit on grief.
On my better days, I can allow myself to think this is okay, I can do this. On my worst days, life can seem unbearable.
The isolation, funnily enough, does not really worry me. After the pandemic when everyone rushed to be with people and have experiences, I did not. Probably because I quite literally couldn’t, but I am not sure I would have anyway. I kind of liked the cocoon that was just the three of us in our enclave. I felt safe and cosseted, and I loved that.
There are days, of course, where I do feel lonely, but by and large, I have settled well into my routine of getting up out of bed at around 9am, making the bed if I am able (which is not often), having coffee, taking my tablets, having breakfast, and then settling into a day of watching crafting videos, or sleeping, or fussing the dogs if I can, or a combination of all those things. On good days I will get dressed, and even make it into my garden craft room to either organise something in it or possibly make something (a card, a scrapbook page or something similar). Although my capacity to create has dwindled a lot, I still like to try, so it hasn’t completely gone. On especially good days, I will even be able to put in a load of washing or make a meal – those days are few and far between though.
Such is the life I lead now. I don’t even have the energy to feel shame anymore. It simply is what it is.
I do sometimes think it would be lovely to have energy to go to the shops, or to a park for a walk with the dogs, or to visit a friend, or to travel (my most long held dream), but my brain fatigues at the very notion of it, so if I need something from the shops, I order it online; if I need company from friends, I chat to them via whatsapp or FB messenger.
So, I am not really alone. I am starting to make some sense of the very small life I now lead.
I do miss words though. I miss my curious mind and reading. I am currently attempting audio books, but they too take up energy and all too often I find myself rewinding sections as I have drifted off and missed an entire chunk of the story. I currently have two stories on the go – Mythos by Stephen Fry (he is so listenable, but I also tend to drift off with the cadence of his voice HA!) and The Dictionary of Lost Words by Pip Williams which I am truly enjoying even if it is taking an age to get through it.
Every now and again, I will attempt a book on my kindle (where I can alter the brightness and font size to accommodate my brain on any given day), but usually that is too much for my addled brain to handle, so I return to the audio book.
Dave has been encouraging me to go into our new local library once a week, just so I can be around books, which he knows I love so much. And I dearly want to, truly I do. But the minefield of actually getting up, getting dressed (which requires not only the effort of getting dressed, but also the planning of what to wear, using up executive functioning capacity I may or may not have on the day), eating breakfast, driving (I still can drive thankfully), parking and then walking to and around the library, and driving home again, is just too much. Just thinking about it is exhausting and I know it will take way too many spoons.
So I don’t go to the library, I just imagine how nice it would be if I could, and count my blessings that I have access to photographs of libraries from all over the world and imagine how wonderful it would be if I was well enough to visit all the amazing libraries that exist.
I was thinking the other day that once it became obvious I could not nurse due to my spinal injury, I should have studied to become a librarian. A career that would have suited me absolutely brilliantly – it involves organisation and categorisation (hello autism), being surrounded by books, and involves creativity as libraries are constantly evolving to be relevant in the current day and run many projects. I would have LOVED it. Maybe, if I ever get well enough, I will look at volunteering at a library.
I am working on being grateful for the blessings that exist in my life – my family (of course), good quality internet, the NDIS that helps me and my family cover some basic necessities (I adore my cleaner), a lovely home in which to live (even if it isn’t what I wanted), my garden craft room (which when I can get in there, is my happy place), and yes, even my brain which whilst a lot slower and vacuous at times, is still functional. Gratitude even for the smallest mercies is a good thing, yes?
Do you have ME/CFS? Are you mild, moderate or severe? How do you cope with the monotony of the every day? Please do leave a comment, I would love some tips and ideas.