Monday, 16 November 2015

“If A Writer Falls In Love With You, You Can Never Die.” Mik Everett

This is a nothing post. A trail of thoughts that have no significance, or at least no premeditated one. This is a purge, an ending of the procrastination...for this month at least. This is not worth your time.

I’ve been escaping a lot these past few months. My paranoia has been at an all time high. I’ve been taking photos of cars sat outside my house because I’m convinced they’re watching me. I’m convinced someone is always watching me, ready to invalidate me and turn everyone against me. I literally know this is my mental illness, I am fully aware of how ill I am getting but being aware clearly doesn’t mean I have any more control over it than if I wasn’t. Or maybe it does? Maybe it would be worse if I was unaware, I’d have been lost in it then? It’s just speculation.

It’s no secret that when I feel out of control of my life, or the circumstances that are happening in it, I try to control it more. It’s something that I know about myself, and I have tried to implement things to stop it from getting to the scary stage where my impulse control goes out the window and I try to put a knife in my leg. So, I play The Sims. I am thirty and I play The Sims. I probably should be ashamed of that but I’m not. A simulation that I can control entirely, that lets me play out a life I wanted to live or create one I couldn’t dream of is incredibly therapeutic. The only problem is that when it is coupled with my ‘binge’ personality then I can lose days, weeks, even months to it. Eventually I’ll get bored and not touch it for years but that just seems to be who I am. I’m a binger. I binge watch stuff, I binge friendships, and relationships, I binge eat, I used to binge drink and smoke… I guess I can’t really do anything if I don’t do it to excess. I’m super impatient, if I have to wait I get bored or lose interest. I am ‘all in’ on something for a while but then will be fine with it not existing for a while. I can’t even imagine how frustrating that is for the people in my life. I guess I’m seen as fickle, flaky, maybe even impetuous. I can see it.

I am a bad friend. I can be shockingly bad with communication. I feel like I have nothing to say to people or they don’t respond correctly* to the things I do say and then that makes me want to talk even less. I’m fairly good in person, or at least I think I am, and I have had periods where I’ve been great at keeping in contact with friends or family but that always ends, and months later I will remember that we were once friends that spoke all the time and now we barely like each other’s statuses. That makes me sad. 

I’m sorry I’m so fickle, or that I reject you before you reject me. If we were once friends, I’m sorry. 

I haven’t forgotten you. 

*This is subjective and dependant on my mood.

Saturday, 5 September 2015

Fermenting In Disquietude

Insomnia: the lack of vital Sleep.

See, it's not that I am unable to obtain The Sleep, if it wasn't for the chatter, the anxiety, and the fears, then sleep would come swiftly. I know it would, it couldn't not with how rapidly my energy levels deplete. It's just that my mind won't LET me obtain The Sleep.

I check my phone religiously, praying to the social media Gods for an article that will engage me enough, that will quiet my disordered mind for awhile; but inevitably my eyes are too heavy to process the arrangement of pixels on the screen.

I lay in the darkness, there's nothing to do but look around. My eyes begin to adjust to the luminescent stars arranged on my ceiling - all in symmetrical patterns except the new additions by the window that are the constellation of my star sign. They remind me of an unfulfilled childhood wish, though they always make me smile. They remind me of being outside when I am confined to my pillow-y prison. Gazing at the night sky isn't something I can do often anymore, both anxiety and physical ability have seen to that.

My room seems so sinister at night, even under the comforting glow of the faux galaxy. Creepy black corners, uneasy creaks, and dancing shadows all feed my primitive fear. My body stiffens with every sensory event. Luckily, the direct result of that is pain, and that takes my mind in a new direction.

I begin to think about how my bedroom is slightly different now, the extra pain comes from putting my bedroom back together after building work, but not exactly the same way, a few small changes. Usually I don't cope well with change but I completely understand the necessity of it. Like when you cut your hair after a break up, it allows you to think differently. You no longer have to think the same way because you're not the same person. My room is different now, all the bad dreams, the intrusive thoughts, and the old insomnia has been cleansed by the new arrangement. Only, negativity is like mould. If untreated, it always comes back no matter how many times you paint over it.

I am never happier than when my life plays out like a scene in a movie. I like to make the sadness romantic, but in the end, no amount of LO-FI can conceal the fact that it is just sadness.

Insomnia: the pursuit of Sleep. I never was one for hunting.  

Tuesday, 12 May 2015

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome/Chronic Fatigue Immune Dysfunction Syndrome/Post-Viral Fatigue Syndrome

Find out about M.E here.
The Spoon Theory is explained here.
Donate here.

In honour of M.E Awareness Day (and week), I thought I would finally share my story. I haven't before, I have barely told anyone how this illness has torn me apart because I grew up in a place that shamed anything different. It took me a long time to come to terms with my disability; I'm still on that journey today.

It is estimated that it began around 14 years old after a particularly nasty bout of Glandular Fever. My general malaise and tiredness was put down to being a lazy teenager but I still managed to do things. I still had friends, went to school and managed to live relatively normally. Exercise was what really hurt me. I remember going to Step Class for P.E. in school and having to walk back down the High Street afterwards with my friends; they practically had to carry me. I remember doing kickboxing with my sister and being pared up with someone who didn't know my limits. That was the closest I had ever come to passing out from exhaustion at that point. I was terrified. The last clear memory I had of exercising affecting me severely was after a boxing session with my sister and our trainer, V. I came home around 5 p.m. and slept until dinnertime the next day. I felt like death.

Fast forward lots of lazy shaming...

I burned out when I was in my early 20s, I was working an incredibly stressful job, battling a lot of demons and other illnesses, partying hard and drinking harder. It began when I constantly had flu, or so I thought. Then came the excruciating headaches; they were so bad I was taking a pack of paracetamol a day! My doctor sent me for CT scans and couldn't find the cause; this eventually led to my diagnosis.  I was so tired and felt so rough all the time but I just pushed past it. Before the end came, I was drinking the energy drink Relentless like it was water and topping up with coffee constantly, luckily there was a coffee bar in our building as it was the only way I got through a day. I constantly fell asleep at my desk. It's a wonder I wasn't fired sooner.

When it hit, I could barely move. I lived in a house, which meant stairs to the bathroom and bedroom. It got to the point where I would pee in the kitchen sink because I just didn't have the energy to tackle the almost vertical stairs several times a day (anyone who has lived in Sheffield will get what I mean here). Everything continued to fall apart, I lost my job, I lost my friends and I left my boyfriend because I didn't want to burden him with my disability. I thought I was saving him.

I moved to West Yorkshire to try and run away from everything (because that always works, amiright) but the place I lived was a top floor flat. I was virtually housebound. Most of the time in that place I was bed bound too. The flat was always completely disgusting, and I had been cut off from everyone. Family stopped visiting, I couldn't get to them and it was the hardest time in my life. The times I did go out was to escape in to alcohol. Luckily, around this time, I met my best friend. She had her own shit but still came over and made sure I ate, bought me food, cleaned my house. She picked me up and kept me safe. I wouldn't have survived without her. I finally made it to an M.E specialist to be formally diagnosed and moved in to an adapted bungalow.

Fast forward to the last couple of years. It has been a struggle. I have had no idea what to do, I constantly feel guilty for being disabled but not looking disabled, and for feeling like I'm a burden on everyone. It's just us, the bestie and I; we look after each other. Sometimes we talk about how we have been so shamed about our illnesses that we question whether we are actually ill at all, spoonie memory problems mean we don't remember clearly how bad it used to be. We have created a life for ourselves here away from the judgement. I try not to overexert; I have a cleaner to save spoons. I have a bed in my living room so I can actually feel like a human being and sit on the 'couch' to watch TV instead of being confined to my bed. We manage our spoons. That means a much better quality of life for us. We still don't have friends, we don't have a social life and we can't do many fun things but I'm no longer bed bound like I was.

The worst thing for me is not being able to cook. We live on takeaways once the fresh food runs out (and it runs out quickly). Not being able to walk around a supermarket for four hours a fortnight (seriously, that's how long it takes us), or having the concentration to do an online shop means we have very little food in. That means takeaways. Sounds nice, right? Every night? With only a limited choice? Greasy, expensive food because you physically can't cook anything and you don't want to eat the dry cereal you had for lunch. That's what hurts.

Do I miss having friends? Sure. Do I miss going out all the time? Absolutely. Did I choose to be a tiger caged in a broken body? Fuck no. I wanted to travel the world, see everything, feel everything. I wanted to have adventures, I loved being out in nature hiking and climbing and swimming in questionable water. I don't know anyone who would choose this life. Do you even know how agonisingly boring it is? A life where you either don't do something and feel manageable but guilty, or you do it and spend the rest of the night/next day paralysed and in a world of pain. Wanna swap? Want to spend all day in bed now? This is probably coming across quite angry, like I said; I'm on a journey. It's hard when everyone is waiting for you to 'get back to who you used to be' and you're just trying to make it through a day without choking down a handful of pills. Too real?

An invisible illness is hard enough to deal with without being trivialised. You've probably never seen a million pounds but it doesn't mean someone is making that number up.

All I'm saying is: try not to be an asshat.