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.