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. :)