Bloggers have been sharing their personal experience and writing about how ME/CFS effects lives as part of Awareness Day.
“I’m now in my 6th year of trying to fight M.E., that is, the 6th year from diagnosis. The first ‘real’ symptoms began in 2002, but it may have in fact taken hold even earlier than that. I remain determined to carry on fighting and hopefully not let it break me. Admittedly some days are very frustrating, but I refuse to let my spirit be quashed. The last few weeks have been very difficult – especially after a period of relative stability – and I again find myself with the frustration that is all too familiar. Of course, I am not alone. There are many others who fight on, trying to make the best they can of a very bad situation. I have a great admiration for all of them, many of whom have it far worse than I do. We are all blogging for Awareness Day.
From International ME/CFS & FM Awareness Day – Nikki, Freya Bean
“I started thinking about what I wanted to write and nearly decided not to write a post after all, as it seems self-indulgent, depressing and looks like a plea for sympathy. I don’t want to be defined by my illness. However, family, friends and colleagues have found it useful when I’ve been open about how it affects me, so here goes…
My symptoms at their worst:
- Constant chronic fatigue. It’s difficult to explain how this type of tiredness feels, the nearest I can get is how you feel when you have flu, with no energy. Rest or sleep often makes little difference. At my worst, I hardly left the house, but have thankfully never been bed-bound, and happily I can now even manage days out.
- Nausea and IBS symptoms.
- Memory and concentration problems. Including not being able to read or not being able to remember/find words.
- Palpitations (very scary).
- Lack of body temperature control.
- I’ve also suffered from depression alongside chronic fatigue.
From Raising Awareness of ME/CFS – Factor Fiction
“I am still largely stuck upstairs in my bedroom. Sitting upright for any length of time is still a huge challenge, so I still have to spend most of my time in bed. There are many, many days where I cannot use my laptop and my mobile phone is my only way to access the outside world; there are a lot of times that I’m too ill to text people and I have no contact with anyone outside my immediate family. I can still get very ill, very quickly and with little warning and ‘lose’ time because I’m only semi-conscious and unable to function. I have daily sinus and head pain, which greatly compounds the problems I have using the computer or any social interaction. My arms and legs feel like there is acid in my veins instead of blood, to the extent that wearing tights or jeans is becoming painful. There are still days where walking the few metres to the bathroom is a struggle because my body just doesn’t seem to work right and my legs won’t respond. I have constant brainfog, which makes concentration practically impossible and there are days where I achieve little more than getting dressed and watching some tv.”
From ME Awareness Week 2010 – Spirit of Phoenix
“* My overall health is currently about 60% of normal, but my symptoms fluctuate from day to day and sometimes within a day, so I can never make plans and expect to keep to them.
* On average I have to spend twelve hours of every twenty-four in bed – but not always the same twelve hours!
* On a good day I have the energy to walk for about two miles in the quiet countryside OR spend about an hour gardening OR dust and vacuum one room OR do about an hour’s shopping in the morning AND to do half an hour’s ironing in the evening – unless R’s out, in which case I have to do my own cooking INSTEAD.
* On a bad day I’d struggle just to walk a few yards across the road OR spend five minutes deadheading OR hang up a load of washing.
* On a really bad day it’s difficult for me to chew or swallow food – it’s been known for me to take an hour to get through one piece of toast.
* Some of my symptoms are constant, some are frequent, some are occasional. Most are mild, some are moderate, a couple are severe.”
From M.E. And Me – The Clockwork Dodo
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