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This is my nephew oscars post from m.e. Aweareness week and is what made me want todo this to help, please read it 

This week is M.E. Awareness Week and I want to talk a bit about M.E. and what a normal day looks like for someone with M.E. M.E. is unfortunately still an incredibly misunderstood, disbelieved, trivialised and underfunded illness which is why I feel it's so important that people read and share this so hopefully one day soon it is taken seriously and a cure can be found. (Also this took me two weeks to write, so please read haha.)

The reality of how truly life destroying and debilitating M.E. really is, is only really seen by those living with M.E. sufferers. For everyone else it might seem like you're still seeing the same person you knew before, but what you're really seeing is a lie. When you see us we're at our very best, on a good day, at a good time, for just enough time that we don't collapse from exhaustion, or at least not in front of you. What you don't see are the days or weeks we spend resting to have enough energy to see people; the pain, fatigue, headaches and nausea we hide whilst people think we look perfectly normal; how we get through the door and collapse, consumed by a paralysing exhaustion; the days or weeks afterwards we spend recovering exhausted and in pain; and what we're like on a bad day, or when we're too ill for weeks on end to even say hello to anyone from bed, for just a couple of minutes.

In an effort to raise awareness of what M.E. really looks like, I've written 'a day in the life of...' me, a person with very severe M.E., which you can read below. I've chosen a fairly 'normal' day for me, it could have been any day from the last month.

'Today I woke up at around 3pm. M.E. causes sleep disturbances and last night I tried to tackle them by listening to an audio book with my eye mask on. In the time it took me to fall asleep, I finished the 410 page book, eventually dosing off at 8am.

I woke up feeling absolutely, unbelievably tired. My legs feel like I ran a marathon the day before, with no training. Although in reality I left my bed only once for a few minutes yesterday. Every muscle aches painfully and intensely. I've been in constant pain every single day since I became ill nearly 2 years ago. I'm so tired and in so much pain it takes me a whole hour just to roll over, reach across to my tablet box and swallow my pain medication.

While I build up the energy I need to eat breakfast I check my phone, using a stand so I don't have to hold it. I still have to be careful that I don't use my hands and fingers too much after they became severely painful for half of last year, aggravated by use, meaning I had to nearly completely stop using them. It was extremely debilitating and even something as simple as changing the channel on the TV remote became a real challenge.

I'm still half asleep at 5.30pm but just able to call my mum and ask for breakfast. I use the remote to sit my bed up and my Mum brings in breakfast on a tray and opens one of the blinds to my downstairs room. My Mum doesn't say too much as she knows I'm very tired after waking up and knows I don't have the energy to talk. I've been trying a rather constrictive diet plan for the last 6 months so I use soya milk instead of dairy with my cereal. I love food and it's one of the only things I can enjoy as I did before I was ill, so the fact I'm trying special diets really shows how desperate I am.

I watch TV while having breakfast and my mum fills some water bottles to go on my bedside cabinet. I found pouring water from a jug too hard and water bottles allow me to drink more easily lying down. Sitting for long enough to eat breakfast, and the physical act of eating breakfast, is tiring and increases my back pain. After breakfast I have a rest, then I go to the bathroom, which will be the only time I leave my bed today.

I spend most of the day watching TV series. Watching TV all day may seem like an enticing prospect but when it's the only thing you can do all day, every day it can soon become as tortuous as staring at the ceiling. Apart from that I'm able to check a few apps on my phone and reply to a message or two if I'm not too mentally fatigued. Unfortunately more recently this level of cognitive activity is becoming too much and half way through the day I've started becoming completely mentally exhausted - meaning I find it difficult to process my thoughts and I get a severe headache. To try to avoid this I have to take regular rests from any activity (even just watching TV) and further cut down things like replying to friends.

It’s been 2 months now since I was last able to see any friends. I haven't been able to see some of my closest friends even once this year. This leaves me in a very lonely position - unable to leave the house, or even my bed, unable to see friends, unable to talk much to family and unable to reply to friends much online. It's even difficult just to find a physician with a basic understanding of M.E. Aside from lack of social contact, it’s been 3 weeks since I was last able to get a bath. Grim, I know. I can't remember the last time I had a shave and just getting to the bathroom even once a day is a real challenge at the moment.

The most debilitating and limiting part of M.E. is what is known as post-exertional malaise (PEM). PEM basically means that if I overexert myself, physically or cognitively, it can cause a significant worsening of symptoms that can last days or weeks or can even lead to a permanent worsening in health. A month ago I went to a short doctor's appointment, in a wheelchair, which caused quite a serious relapse due to PEM and I've been almost completely bed bound ever since. Because of how severe my symptoms are now, the smallest of things could cause PEM. It could be talking to my mum for a few minutes, walking up the stairs, sitting for half an hour in bed or just getting a bath.

At 8pm I sit up again in bed to have tea. After tea I start to dose and I fall asleep briefly. I'm supposed to keep a diary each day which my Dad usually types so my specialist can monitor progress, but today I'm too tired to dictate. By this point I'm struggling to keep my eyes open. The fatigue is so intense I can feel it in my face - above and below my eyes and in my teeth, incomprehensible even to me on a good day.

At 9.30pm my Dad brings in some toast which I eat lying down on my side because I'm too tired to sit up. Later I brush my teeth lying down in bed because I can't get to the bathroom. I turn my TV off at 2am and after getting little sleep the night before I'm able to get to sleep by 4am.

Tomorrow I will live it all again.'

Although I refuse to consider the possibility that I might not recover, because that isn't a possibility I can live with, the reality is that only 5% of adults make a full recovery. We'll ignore the fact that having severe M.E. makes that number even smaller.

I only want to touch briefly on this because this post is long enough but I have to comment on the atrociously low funding for M.E. treatment and research in the UK and around the world. Despite having very severe M.E., I don't even qualify for funding with the local M.E. service. And in the UK the average yearly spend by the government on M.E. research, per patient between 2006-2011 was a whole 56p. Crazy. I will put info in the comments on how to donate if you'd like to help by donating.

Please share this with your friends and hopefully it will help more people to understand how debilitating M.E. really is and give a snapshot of what it's like to live with. This is not something I particularly enjoy telling people, but the truth of M.E. must be told if we want to find a cure.

P.S. Yes, I know I'm looking hot.