THE BLOG

'It's More Than Just Feeling a Little Tired': Five Things You Should Understand About Living With M.E

01/03/2016 16:57 GMT | Updated 28/02/2017 10:12 GMT

Imagine what it would feel like waking up every single day feeling like you've had no sleep at all. Not being able to make plans because you're worried that you may be too tired to even talk when it comes to the occasion. Laying in bed, unable to move, your body aching, but adrenaline telling you to get out and enjoy the day when you barely have enough energy to make a cup to tea.

A few close friends of mine have suffered from Myalgic encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, for years, and I although I understood that it makes you feel tired than other people, I am ashamed to say that this is as far as my knowledge went. I never probed or asked further questions. It wasn't until one of these friends recently made a video opening up about M.E that I began to fully understand the extent to which it impacts on your life.

With that in mind I have picked out some of the most powerful things that I learnt from her. I hope this will also help to shed some light on a condition of which there is still very little awareness or understanding.

Quotes are taken directly from Madeleine Lee who has suffered from ME for 15 years.

1) Its' not just normal tiredness

The symptoms of ME include intense physical or mental exhaustion, muscle pain, fogginess in the head, and lack of ability to concentrate.

"Often people say to you, oh I know I understand, we all feel tired at this time of year and I think, It's not just normal fatigue. I've just got to go to bed. You can't get up. Your whole body hurts even to touch it. And you just literally you haven't even got the energy to make a cup of tea. You can't. You get up and it feels like running a marathon and you go to bed and you pray you're going to feel better the next day but you don't and then that gets really frustrating after five days on the trot, maybe six and you still feel like you haven't had any sleep at all."

"And that's very interesting because no matter how fatigued I am I feel like I am very fidgety because I've still got this adrenaline cursing through my body."

2) It still isn't clear what the cause is

There is still very little understanding over the cause of ME, although many sufferers link the onset to a virus. As yet there is no cure, only techniques that can be suggested to ease the symptoms.

" It can be as sudden as waking up one day, feeling fatigued, muscles aching. I had a virus, it felt like a clamp around my head. But not like a normal virus, it didn't go away. It had been ongoing for four weeks and I began to get worried and went to the Drs but no one could tell me what it was. "

"Because there is no formal diagnosis it can be difficult for others to understand"

3) You have to pace yourself!

"Pacing is everything and when I first got told by the doctors to pace I couldn't do it. I found it too boring. Pacing is managing your energy. If you do something for an hour then you need to rest for an hour. So you're always keeping balance. One of the good things to do is to either go to a yoga pose, meditation or sleep, anything that's going to switch your body off and then you start again. This is why its very hard for M.E people to have a normal life because you have to pace. You can't just go from one thing to another like most people can. It's very hard to live with sometimes."

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4) Because it's invisible it's very hard for people to understand.

- "Its so difficult when people can't fully understand and you have to cancel things. I can't really fully arrange things because I never know how I am going to feel. Someone might invite me to a party in a week's time. I can't say yes even though I do because I'm naturally spontaneous so I will jump up if I'm feeling good and say yes yes, how exciting. So if I want to be there then for the next 5 days I can't go out any other evening, I have to go to bed really early..."

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5) The worst thing you can do is fight it.

"I think the key to it is don't get frustrated because it is frustrating but you have to learn to go with it and one of the things that I found hardest of the 30 years of having M.E is that I would fight it. It did not suit me. I didn't go to groups, I was so in to not labeling. I didn't even tell anyone I had M.E . In fact I told myself you don't have M.E but all I did then was cause. One of the best things I ever did was when I let go and I accepted."

"I think its taught me to have an inner peace because somebody might be going off to that party and you have to stay at home or they might be going out for the day and it's a beautiful sunny day and you can't get out of bed."

Because there is no cure you have to find a way that you can manage a normal life and this is the way I've done it. You can but you do need support. You really need support from yourself more than anyone else.

You can watch Madeleine Lee's full interview here.

For more information on M.E please visit ME Research UK