Something in the way
I want to write something, but I don’t want to be writing about how exhausting everyday life has been or how I am fed up with getting overwhelmed by things I am really enjoying. My illness is a blight on every experience, and we are heading into a fun part of the year. I have a great itinerary; it has opera, Glasglow and the resumption of lunchtime concerts all before Christmas and the joy that it brings.
While I am eagerly looking forward to my upcoming events, my excitement is overshadowed by the fear that my body is going to stop me from having fun and enjoying myself. During my Frida trip, my physical limitations became very apparent; this trip taught me that my mental capacity wanted to bite off far more than my physical ability could handle. Once upon a time I would have counted this as one of my strengths; now it is a liability. A key diagnostic feature of ME is post-exertional malaise. When I, and most people, think of exertion, we think of physical things. ME cares not one bit for what we think is exertion; rather, it counts mental activity just the same or sometimes even more taxing than anything physical.
Sit down to read something for relaxation; ME takes that as a workout and will happily leave me exhausted before the end of the chapter. My task every day is to look after myself, keep clean, eat enough, take meds on time and not succumb to the dark thoughts. I may think the world would be better without me; I might be right. However, this is not the time to find out. I have things to look forward to, as well as much more to give and achieve. To keep the story short, nothing is restorative, not even sleep. Sleep can be the most exhausting and elusive thing of all.
The point I am trying to make is, to borrow a phrase, that I am sick and tired of being sick and tired. I don’t want to need days to recover from a 2-hour online writing workshop; I don’t want to read two poems before bed and be too exhausted for a third; and I don’t want to be thinking I have to take a shower in the evening so I don’t risk being too tired to do anything all day. I want something to be enjoyable without there being a price to pay; consequences are for toxic relationships. I am heartbroken to have arrived where I am and have almost no capacity to enjoy it.
I don’t need capitalism to make me feel a burden; I do already. This is the week the anti-disability rhetoric has finally got to me. My anxiety is running riot while I wait for my PIP review. I am actually worse than my form says, but I am scared of saying anything will lead to it being taken away. Even if I lied, there aren’t jobs for me. Before becoming disabled, I had been self-employed for twelve years. My university qualifications are decidedly out of date and less relevant than they were when I got them. All the while it feels like the last two years have been a war on disabled people; not a month seems to have gone by without us being demonised. More than one disabled creator has pointed out that the Nazi’s tested their concentration camps on the disabled and undesirables before moving on to the “Final Solution”. The very fact that anti-disabled propaganda has been pushed into acceptable discourse is as frightening as it is despicable. People aren’t even ashamed; that’s how atrocities start.
I feel like a burden anyway; I get help and am supported to live as independently as possible and still chase my dreams despite the challenges and setbacks I face. I know I am blessed, and there are lots of people, disabled or not, who are not fortunate enough to be where I am. If I could be more motivated, I would be. However, while I type this, my bones feel bruised and ache. I feel sore; life has made me raw like a ripped callus or grazed knee.
I am blaming the hostile zeitgeist because I have no idea what is making me feel this layer of emptiness. I am doing positive life things, enjoying the enjoyable; I am motivated, and I wake up wanting to make the most of my day. All the criteria of a good mood apply; my mood is a warm sunny day where you can see the blackest of clouds looking like a storm that will rush in and ruin everything. That all your building will leave only rubble, with nothing left to salvage.
Tonight, when I go to bed, part of me wonders if I am going to wake up, while another starts to plan how I can make the most of the gift of another day. What will my deteriorating body let me do, how much of a burden am I really, do I deserve to be here, questions I push off when the lights go out. Tomorrow, I’ll do it all again.
Poem: Tired of being tired.
Tired of being tired
Days exhausted with life
Feeling everything there is to feel
And it’s all a bit too much
Thinking of the empty bottles
Pills, scales, bags and credit cards
Feeling only warm rushes and love
Elevated, the world lifted up high
To come crashing down another day
A day like this one
Aching with regret
Remembering I’ve moved on
I can’t get back what has gone.
