What is M.E?
M.E is short for Myalgic Encephalomyelitis. The actual translation of Myalgic Encephalomyelitis is inflammation of the brain, nerves and muscles. This has great resonance for me. When I’m in a bad patch it feels like my brain is inflamed. I often say it feels like poison is seeping out of my brain into my head and my head just wants to shut down. And the name makes sense for me with regards to the vast number of unexplained injuries, aches and pains I’ve had all over my body.
Other names, especially CFS, are becoming more common in usage because there is no consistent evidence of the swelling of the nervous system tissue which M.E implies.
The other names used for M.E conditions are:-
- CFS (Chronic Fatigue Syndrome) – which for me is not enough. Fatigue is a big part of the condition but there
--are so many more important symptoms that CFS just doesn’t capture.
- CFIDS is used in America (Chronic Fatigue Immune Dysfunction Syndrome).
- ‘Yuppie flu’ – this was the name people called it in the past, suggesting it’s an illness people could shake of
-- if they really wanted to. I really struggle with this, knowing how horrible the condition is.
- PVFS (Post Viral Fatigue Syndrome) – is not always used as there is not always an actual viral infection to

--start with.

My M.E Experience
Through counselling I have been able to gain understanding of my own condition. Here are some of the pieces I have written about my own experiences of having M.E:-

‘ I feel like I’m a fool. In my good patches I ooze positivity, bounce like I’m tigger and feel like I’m flying. Who’s ill?…not me. Then the fog just comes down. It’s such an effort to do anything. I feel happiness drain out of me, my stripes disappear and I am left with tears. I don’t understand. This isn’t me. I think to myself, ‘snap out of it you crazy fool’ but I can’t. How do I explain something to other people which I can’t understand myself? I wish I was covered in spots or my skin was see-through so people could see my pain. This illness is a poison. It eats at the very essence of who I am. For I love life and am a joyous soul. I am no fool.’

‘I’ve been able to use weather parallels to describe how I feel. The condition is hugely depressing and giving my own personal weather reports makes me smile. To smile in the blackness is wonderfully defiant. And it appeals to my fighting instinct. When I'm in thick fog, I feel suffocated/smothered. I feel rotten. Any action, even thoughts, reading or talking to people...feels too much. If I do anything, the fog gets thicker, so I stop resisting. I curl up in it and let myself enter the blankness.

Although it makes me feel down, I'm more accepting of it than the grey cloud of the low pressure weather front that just won’t shift. In the grey cloud I feel I’m in more of a cat and mouse game. I'm no longer lost in the fog. I head towards lighter looking cloud, only to find more grey cloud. It’s like seeing a mirage in the desert. It’s mind blowing. I'm not bad enough to lie in bed but I don't feel well enough to be out and about in normal every day life. It's like I'm locked in this half way world. Not fully in the 'sick' world and not fully in the 'well' world.

I can energize to do things in the outside world but I feel thoroughly whacked out afterwards. I feel it's so important to give myself something rather than staying in this stagnant state I just can't stand. I know I feel better when I'm doing something, so sometimes when I'm in the grey cloud I give myself a high. I go for a walk, run or swim.

The exhilaration, the feeling of aliveness and the lack of unwell feelings when I’m doing these things are wonderful. It’s like giving myself a present and a few moments of not having this 'yuk.' Part of me hopes by doing these things I'll break the grey cloud cover. I know I might feel worse after, but I might feel better after or I might go back to the same state. If someone could tell me what makes me worse and what makes me better, I'd take heed. But they haven't. I'm not waiting all my life for this to go away and not have lived. This illness promotes passivity, it sucks life out. And I'm not having that.‘
M.E & Counselling
Some of the difficulties of living with M.E which can be addressed in counselling include:
How to live without a clear diagnosis or an explicit recovery plan?
How do you live with a condition that has no definite name, no definite cause, no definite treatment and is a widely discredited/unknown condition? There are people with severe M.E who are bed bound by it. But often with M.E you look normal and outwardly appear to be a fully functioning individual. This is what I call the grey. You don’t feel well enough to be a part of ‘normal life’, but are not sick enough to be in bed. This can feel embarrassing because you don’t feel unwell enough. How can you be you when you have this condition? And how do you exist in a world that functions in black (sick) and white (well), where there is no room for the greyness of a lack definition and a label?
Living with brain fog
Have you tried saying the name Myalgic Encephalomyelitis even when you haven’t got M.E? Brain fog is one of the severe symptoms of having M.E. It can be very distressing losing clarity of thought when the fog comes down.
How to communicate how you feel?
With M.E you may not look ill. How do you describe a condition that is so intangible? There are so many differering symptoms and they wax and wane so. How do you explain such intangible things as pain and fatigue? People only know how you feel when you tell them. You may feel it’s easier not to tell people how you really are. You may fear if you say anything, you will be harshly judged. You may feel you need to give running commentaries and explanations to get your experience across. Or you might not be able to find the words to sum up the enormity of how you feel.
Not being seen as an individual nor having your own personal experience valued
Expert advice for all people with M.E is that the best way to recovery is through cognitive behavioural therapy, anti depressants & graded exercise. My belief is that the one model fits all approach, can do more harm than good. I feel a huge group of people have been diagnosed with M.E who have very varying symptoms and are told to recover in the same way. Without firm facts about what M.E is and how you can recover from it, I feel the real expert on this condition, is the person who has it. You are the one that feels and lives with your body. It is vital that you hold the reins of your situation and that your unique experience of your symptoms is respected by those around you. A feeling which adds to the fogginess is the feeling that the condition & experts are controlling you.
Why would a person with M.E come to Cope Counselling?
Having my own M.E experience, I believe I can develop a deep empathy for your own experience of this condition. Through Cope Counselling you can regain hold of the reins of your life by developing an understanding of your own unique condition and gain some clarity in your brain fog. What does it mean for you to have M.E? How does it feel when you’re in a bad patch? How do you feel living in the grey? You may not have the vocabulary for how you feel. Drawing pictures, writing poems, showing it non-verbally may be a way to communicate your struggle to another, something that helps to lift the weight of the lonely M.E journey from your shoulders. Cope Counselling offers a non-judgemental space where you can talk about your experience and feel that you, and your condition, are respected and valued.