Sunday, 17 October 2010


Okay, I'm going to write everything I'm feeling right now, in the hope that you'll see it and understand, because i can't keep pulling at this thread without losing the few marbles i have left.

While my friends have been busy building their adult lives, getting jobs, learning to drive, getting their own place, falling in love, getting engaged, travelling and enjoying everything life throws at them. I've spent the last four years in a state of empty limbo, never planning anything, never looking to the future, never opening myself up to something that could end up hurting me in the long run. I had so many plans for my life, but the day i was diagnosed those plans had to stop, because i had to focus solely on getting better. And yes i have shied away from life and new experiences because i am absolutely terrified of pushing myself to far and ending up being bed bound, i will not survive that. I've already been to rock bottom (which resulted in me stabbing a knife through a chair instead of stabbing myself) and i have no desire to set foot there again.
I can't drive, I've never had a serious relationship, i haven't seen any of my friends for over a year, family members have removed me from their life, i never plan anything because my body always finds a way of ruining it, i hardly ever go out, i suffer from crippling nerves and am always one bad experience away from having a panic attack, i have to be selfish and consider everything i do, and everywhere i go, on how it will affect me and whether I'll be able to handle it, which ends up making people think i don't care about them or don't want to see them, which couldn't be further from the truth.
How do open up your shambles of a life to someone you have (terrifying) feelings for and not expect them to run away screaming in the opposite direction? And it doesn't matter how many times that person says "don't be silly, no one's going to run away from you", i just can't shut off the voice in my head that says "don't let them get to close, don't let them get to far into your heart, because they'll leave in the end, just like the friends and so called 'family' who see how difficult M.E makes things and decide to bail out instead of trying an ounce of compassion or understanding".
I've shut off my heart and my life to new people and new experiences because if it all goes wrong it'll make my M.E worse.
Admitting all this about my life, hurts, and is very hard to do, so god knows how other people react to my life!
I try my hardest not to think about any of this, because it always upsets me, even as i write this I'm crying.

This is why I've avoided your questions, avoided making plans, avoided talking to you. Fear. All consumming fear.

Sunday, 19 September 2010


I'm struggling right now, i really am. A few months ago i felt like i was holding a million different things in my arms, but they were all perfectly balanced. Now its like someone has put their foot out in front of me, tripped me up, and my millions of perfectly balanced things have come cascading down on to the floor. I'm scrabbling around desperately trying to pick everything up again, but as soon as I've got a few things back in my arms, a whole load more fall back on to the floor.
Things are slipping away from me and i don't know how to get them back.
Recently a friend has got back in touch, she's worried about me and wants to see me, but all i feel like doing at the moment is shutting the world out so i can focus on me and get back to some form of routine, (which was one of the many things that I'd dropped on the floor).
Why do i have to fight so desperately for a tiny shred of normality?
I need hugs and chocolate, lots and lots of chocolate.

Wednesday, 25 August 2010

Thank you

To raise awareness for this years M.E awareness week i decided to come out of the metaphorical M.E closet to all my friends on Facebook. A few of them knew already but the majority of them had no idea, i'd kept it quite secret. But i was getting increasingly frustrated with the people in my life, who knew already, misunderstanding M.E. I thought that the only way to raise awareness and make people understand was for sufferers to be brave and willing to speak about it, even if it lead to difficult questions.
So even though i was absolutely terrified (i was so scared i was actually shaking) of the reaction i would get, i put my brave face on and poured out my heart to the world.
This is what i wrote:
"It's M.E awareness day on 12th may 2010 and M.E awareness week from 9th may to 15th may.
I was never ever going to write this on Facebook because i don't want anyones pity, but the only way to raise awareness of M.E is for sufferers to talk about it, so here goes, i have M.E and this is my story.

When i was fifteen i had Glandular Fever but after i'd recovered i still felt tired and had no energy. After a lot of arguments and being called lazy (and a few other names i've chosen to delete from my memory), i begged my mum to take me to the doctors. I asked my doctor if he thought i had M.E, he said i categorically didn't have M.E and sent me home with antidepressants (i was not depressed so they didn't work at all and after a few months i stopped taking them). I carried on with school and my GCSE's, but still felt constantly tired.
I left school and went to college to study chidcare, after a year (and passing with a merit which i still can't believe) i left to start at a new college, but in the first few months i caught a cold i couldn't get rid of which turned into a throat infection, which then turned into a chest infection. After two course's of antibiotics i finally got rid of it and went back to college and my job in a nursery, But i imediately knew something wasn't right. I constantly felt exhausted, achey, dizzy, had horrible headaches and i couldn't concentrate on anything. As soon as i got home from college i would fall asleep, then wake up to have something to eat, then fall asleep again, then i'd wake up at 7am, get ready for college and start the whole day again. I knew this wasn't ordinary tiredness so i went to see a new doctor who thought i could have M.E, he sent me to an M.E specialist who diagnosed me after about five minutes of meeting him, he said i did have M.E from the age of fifteen. He also told me that for a doctor to make a diagnosis of M.E the patient has to have four out of a list of eight symptoms, and as i don't do things by halves, of course i had all eight and alot more.
I tried to carry on with college, but after a particularly bad day on which i collapsed through my front door, i knew i couldn't carry on anymore and the next day i quit college and my job and tried to get used to a life where the only thing i do all day is rest. I think that's been the hardest thing to get use to.
It's been nearly four years since i was diagnosed, and i've got alot better, though about 18 months ago things got alot worse and i was very ill, but i've somehow managed to come through that with my sanity reasonably intact.
I have no idea what the future holds for me or whether i'll ever get completely better, but i feel lucky, there are so many people who are worse off than me. Some people with severe M.E can be bedbound and unable to even talk.

Here's some information about M.E

M.E stands for Myalgic Encephalopathy, other names for it are Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome and older generations use to call it Yuppie Flu.
Symptoms: Fatigue (of an overwhelming kind), pain in muscles and joints, headaches of a different type and intensity to the headaches of a 'normal person', dizzyness, a feeling of having fog in your brain, loss of memory, having trouble concentrating, problems with sleep, poor temperature contol (which basically means when its hot you're freezing, when its freezing you're hot), reacurring sore throats, vertigo, nasusea, mood swings, sufferers can develope depression, having trouble finding the right names of things, fainting, developing sensitivities to alcohol, food, smells, light, sounds and many many more.
No one knows the cause of M.E but it can develope after illness, stress and bereavement.
There is no known cure, but there are therapies that can make it better.
Anyone can develope M.E it doesn't discriminate between colour, age, wealth or health.
Even though M.E was recignised as a real illness in 2002, some people (and even some doctors) struggle to except its existence.
M.E can be a very isolating and confusing condition (even i don't completely understand it).
If you have any questions about M.E then feel free to ask me and i'll try to answer them.
If you've read this all the way to the end, then thank you, you are a true friend and i appreciate you being in my life. xx:)"

The response i got was overwhelmingly positve, the messages of support i recieved made me cry. I felt like a bit of an idiot for feeling so scared.

So i just want to take the time to say a very very big thank you to all those people who commented and gave me their support, you have no idea how much your kind words meant to me. Though i only know some of you through Facebook, it doesn't make your support and friendship any less meaningful.
Thank you. I love you all. xxxxxxxxx

Friday, 6 August 2010

What does having M.E feel like?

I get asked "what does M.E feel like?" so many times, (mostly by doctors who are trying to understand how you're feeling), and i usually can't find an answer because M.E is so confusing and it feels different everyday, everyday there's something new to deal with, a brand new symptom or an old one that makes a reappearance.
The only way i can describe it is if you imagine you're climbing up a mountain that's so high you can't even see the top, it's muddy, you're wearing flip flops, you can barely see where you're going because its so foggy, you have a Range Rover strapped to your back and you have to drag it up the mountain. You're already half way up the mountain so its pointless to turn back now, you have to keep going and just hope that there's some sort of salvation at the top.
While you're doing this, you notice that there's an escalator next to you taking people up to the top of the mountain, but you're not allowed on it. While you're desperately trying to drag yourself and the Range Rover up the mountain, the people on the escalator are talking to you saying "but you don't look sick", "you're just tired", "there's nothing wrong with you", "its all in the mind", "why don't you just go for a walk", "why haven't you come to see me recently, don't you love me anymore?", "you're just unfit, maybe you should try some exercise", "you look well". The people on the escalator don't mean to say these things, they're just trying to be kind, trying to be a comfort. But they don't realise that what they see on the outside isn't representative of how you're feeling on the inside.
Okay, that's enough of the analogy. Basically M.E is a constant struggle between the limitations of your body and the hopefulness of your brain.
Now my brain has gone completely blank, so i think I'll end it here. Thanks for reading. :)

Thursday, 22 July 2010

I'm back baby!

Wow, it's been over a year since i last posted on my blog, you can blame my terrible memory for that, very soon after my last post i not only forgot my password but the actual address of my blog as well! I think i need to trade in my brain and get a new one, would anyone be willing to adopt a slightly worn out brain? I'll pay you very generously in biscuits (my favourite form of currency).
Okay okay, enough of the biscuits. What's happened in the last year of my life? I hear you ask.
Well here is a brief summary:
Many, many doctors, hospitals, tablets, medicines, injections and tests. Being poked, prodded, analysed, misunderstood, confused, lost, found, understood, angry, happy, sad, sleepy (very very sleepy) stressed, anxious, content, loved, confused, confused, confused and oh yeah confused.
I have, been to a party (the first one in a long time), taken hundreds of photos on my camera (mostly flowers), bought a laptop, broken my printer, been to Norfolk, fallen in love, consumed a mountain of biscuits (I'll be any one's for a packet of Shortbread), drank an ocean of green tea, had a meal with all my family, had my hair cut scarily short, nearly broken my toe after i dropped a glass bottle on it (then i went and dropped something on the other toe the day after, clumsy oaf!), been to the cinema, had my letters published in my favourite magazine (Doctor Who Magazine, I love Doctor Who), had problems sleeping (again), made some lovely new friends and bought far to many clothes and shoes.
Well that's your update, I'll see you again in another twelve months....................only joking, you're not getting rid of me that easily! Muhahahahaha.