Blog Post One
Hidden illnesses. How do you go about explaining this life changing thing you’re experiencing? How do you explain the pain, frustration and daily mental battle? If I hadn’t lost my hair, I would look ‘normal’ so people would assume I am feeling ‘normal.’ I know the feeling of tiredness that glandular fever brings and this has been so much worse with the added joy of other symptoms too. If I trace some of the symptoms back, I’ve had them for quite a while, they’ve just got increasingly worse so when the doctor diagnosed ME, I felt relieved as I knew what I was dealing with and could research what to do to help myself. There’s no test to diagnose ME, it’s more like a check list of symptoms that have lasted over a period of time and unfortunately, there’s no known cure or treatment – something that is difficult for people to understand as they want to help, they want to fix and they can’t.
ME (Myalgic Encephalomyeitis) is more commonly known as CFS (Chronic Fatigue Syndrome).
The chronic fatigue part is the worst. We often comment on how tired we are, I know as a teacher we do it far to often but not without good cause! I’m glad I am a teacher and that I know that ‘end of term’ or ‘Ofsted’ tired because I’ve been able to use it as a gauge. As far as I can tell, ME effects people in different ways and for varying periods of time and although it may appear to improve or even disappear, flare ups are often experienced for the rest of your life. For me, I haven’t been bed bound by it but am spending much more time in bed and sleeping than ever before and feel constantly weary. There’s a sense of constant lethargy, I wake up feeling just as tired as the night before, my sleep is often restless due to muscle pains and cramps but thankfully most nights I sleep solidly. Some days I wake with more energy which is so exciting but so deceptive as I feel I can do much more but that results in a crash either later that day or the day after. Those crashes result in my legs feeling like I’m dragging bricks around and muscle pain like I’ve run a marathon and for those of you who know me, know I’ve never run a marathon – I needed two bras to tap dance so let’s not imagine what I’d need in a running situation!!
It takes a huge amount of energy to contemplate getting up and going through the morning routine and I don’t even have hair to wash, dry or straighten and I’m not applying make up! I find that since having rheumatoid arthritis, simple jobs that I took for granted like brushing my teeth, are particularly difficult and time consuming and getting dressed is exhausting. I feel ridiculous, they are such normal jobs to do and I’ve just slept for twelve hours but it just zaps me.
Initially I found a few ME sufferers described it as having a certain amount of beans a day but the more research I’ve done, I’ve discovered the real analogy involves spoons. “Normal people” have an almost endless amount of spoons per day, sometimes needing a power nap if they are going out in the evening. However, for an ME sufferer, the analogy goes along these lines: sufferers have on average 15 spoons in a jar a day but each activity completed will use a certain amount of them. You can borrow spoons from the next day but obviously this will have a knock on effect. Different activities have different spoon values so you have to decide what you use your spoons on. You will find you need a sleep most afternoons or even after you’ve done your first daily task, but this doesn’t add spoons, it just means you have the energy to use your remaining spoons for the day. It sounded ridiculous at first but actually it’s brilliant.