Community: Real Life

Naming M.E.


Viks

Viks is 24 and from Surrey. She's bed-bound due to M.E., but works hard as co-founder of Post Pals, a website community for sick young people.
Entry: 2
Date: 11/01/2007

Feeling constantly knackered, nauseous and in pain can devastate your outlook on life, particularly when you don't have a diagnosis.

At school, you were always taught that a story should have a beginning, middle and end. So, when asked to write a diary entry about how my illness has affected my life so far, I was stumped about how to tackle it.

Feeling like blurgh

The problem is, there's no clear beginning, and as yet, no end. It's not like the vaccination that triggered my illness went in and I dropped to the floor with ME. My health slowly worsened over several years, but during this time I couldn't figure out was happening to me. People don't take you seriously when your symptoms are as vague as ME often is. Saying: "My body hurts, my head feels like hell, I'm shattered, nauseous, and I feel like blurgh," doesn't exactly inspire tea and sympathy. More often than not, I was told that my symptoms were down to puberty, or that I must simply be unhappy at school.

Without a diagnosis or clue as to what was wrong, the endless list of hospital appointments blurred into one another. I was prescribed many different types of medication and treatment, but nothing made a difference. Meanwhile, medical tests would draw a blank. In the end, you start to question yourself - most people complain about being tired at one time or another, so I just thought, "maybe the problem is that I just can't handle it?" But then reality kicks in and you realise it's not normal to have stabbing pains in your head that are so intense they affect your breathing, or that when you eventually make it to school you have to come home straight away and fall straight asleep. You also realise that your body's not meant to endure so much pain that it has to summon up every ounce of energy left just to keep walking.

"I deteriorated to the point of having to be taken to the toilet, unable to speak other than whisper the odd word."

The diagnosis

As time went on, things went up and down. But at the age of 15 things were definitely down! My GP decided that the specialists were only looking into the symptoms relevant to their specialities and what I needed was a doctor who would look at me as a whole - hence the referral to a paediatrician. At the end of my first appointment, he told me I had ME, a condition which will get better by itself with time. Although I was disappointed that my condition was hardly one you could wave a magic wand at to make me better, I was elated that it finally had a name. I was confident that from then on things would get better.

I was wrong. I deteriorated to the point of having to be taken to the toilet, unable to speak other than whisper the odd word, or tolerate any light. I will write another time about what it's like to be able to do less than your average baby, but I think I'll leave at this for the time being.

In the meantime: happy 2007, everyone!


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