I\u2019m ill.<\/p>\n
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And apart from me working 10 til 3, it\u2019s not something people would usually notice.<\/p>\n
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I have no physical symptoms and I try my hardest to live as normally as I can.<\/p>\n
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I have M.E. – or Myalgic Encephalopathy for long.<\/p>\n
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It\u2019s not that well known, although about 250,000 people in the UK live with it, so I thought I\u2019d write this to give you a bit of an insight into it.<\/p>\n
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So here we go – Me & M.E.<\/p>\n
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Once upon a time, when I was about 11, I came down with a flu-like illness. It lasted longer than it should, so I was taken to my GP. After a few appointments and blood tests, I was told I had a virus that had affected my immune system.<\/p>\n
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For the rest of that school year, I went in for only half days – but by the time Year 8 came around, I was well enough to go back to full time. So I carried on as normal, getting back to everything I had done before my illness, including swimming lessons.<\/p>\n
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Stupidly, after only a few weeks of swimming, I attempted to go for one of the badges. For part of this, I had to swim 32 lengths of the pool. I managed about half before I had to drag myself out and promptly collapsed on the side.<\/p>\n
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After that, my mystery illness returned. During the first few years I had many more appointments and many more blood tests, until finally, one doctor diagnosed me with M.E.<\/p>\n
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After this, I worked with the doctor to regain my health – doing things like sticking to half days at school and trying to step up my fitness with graded exercise. I did manage to go back to a relatively \u2018normal\u2019 life for a few years after college. But I was never quite 100% and last year I relapsed completely.<\/p>\n
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So what is M.E.?<\/p>\n
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It\u2019s a debilitating illness which can have many symptoms, and these are different for every sufferer. The effects of each symptom can range from mild to severe, making it difficult to both diagnose and treat.<\/p>\n
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The main symptom is physical and mental fatigue, hence the other name it\u2019s known by – Chronic Fatigue Syndrome. This fatigue doesn\u2019t go away with sleep and makes it difficult to do normal activities. Exercising is pretty much a no go, as it makes it worse – making you tired hours, or even days afterwards.<\/p>\n
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For people who don\u2019t have M.E. it can be hard to understand what this type of tiredness feels like. It\u2019s not a sleepy tiredness – it\u2019s exhaustion, the type you feel after pushing yourself past your limits, like running a marathon or working all hours on a project for weeks. I just feel like that on an ordinary Tuesday morning.<\/p>\n
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But it\u2019s not all the time. And that\u2019s one of the frustrating things about it. Sometimes I\u2019ll get to the weekend and feel like I can do anything I want. So I\u2019ll catch up with all the jobs I\u2019ve been putting off – I\u2019ll go food shopping, I\u2019ll tidy the house, I\u2019ll finally clean that pan that\u2019s been sitting in the sink all week. But that\u2019s the worst thing I could do.<\/p>\n
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Christine Miserandino came up with the Spoon Theory to describe what living with this fatigue is like. To demonstrate the theory to her best friend, she laid out 10 spoons in front of her, explaining that these spoons represented her \u201cenergy\u201d for the day – every time she did something, she\u2019d take one away.<\/p>\n
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Christine asked her friend what her typical day involved. She answered that she usually had a shower before work, then drove in. \u201cWait a minute\u201d Christine said \u201cYou\u2019ve used 5 spoons already\u201d. She explained that just getting out of bed was a big effort, so that was 1 spoon, then showering and getting dressed was another 2, and driving was a major one as it involves a lot of concentration, which affects mental fatigue.<\/p>\n
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Her friend was taken aback, asking how on earth she coped. Christine replied that she had to modify how she lived – she knew working would take a lot of her spoons, so she hardly did anything outside of work during the week. Then at the weekend she had to be careful, as doing too much would invariably use up all her spoons in one go, and even eat into the next few days.<\/p>\n
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So that\u2019s why if I do the washing up at the weekend, it can affect me later in the week. Which is a brilliant excuse to use on your partner.<\/p>\n
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But I only really have a mild form of M.E. – many sufferers aren\u2019t able to work and a few can\u2019t even leave their beds.<\/p>\n
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Fatigue is just the start. Back in school, my other symptoms included a permanent headache, which I now believe was directly linked to the tiredness, and insomnia, but there are a range of others.<\/p>\n
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My symptoms have changed as time has gone on. As well as the fatigue, they now include dizziness, muscular pain, poor short-term memory and concentration, and difficulty organising thoughts and finding the right words – or “brain fog”. I can get halfway through a sentence and completely forget what I was talking about, or struggle to think of the word I want to say. Which is very helpful when you’re a copywriter.<\/p>\n
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M.E. scares me sometimes. Not because of the symptoms, but because of the impact it has and might have on my life. What if I can never work full time again? What if I can’t have kids because I wouldn’t have the energy to look after them?<\/p>\n
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I can’t answer these questions. All I can do is stay positive and enjoy life when I can.<\/p>\n
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There\u2019s no cure for M.E., and no real treatment. But I can take heart that I\u2019ve got through a bad patch before, and so I have faith I can do so again. I probably won\u2019t ever be 100%, but I have learnt how to manage it.<\/p>\n
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So hopefully that\u2019s given you a bit of an insight into M.E. and how it affects people. Thank you for reading.<\/p>\n
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NOTE: I\u2019ve amended the story behind the Spoon Theory to make it shorter. The full version can be found here<\/a>.<\/p>\nShare this:<\/h3>