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Living with ME

Living with ME

MEMyalgic Encephalomyelitis, or CFSChronic fatigue syndrome is a chronic illness and like many chronic illnesses, not much is known about the exact cause, why the symptoms and severity differ so greatly. In fact in my experience often even so called medical professionals are not sure what it is, and how to treat it. I had a pharmacist only last week, say to me in a confused tone, "oh that's the fatigue thing isn't it" reassuring it is not.

I can of course only speak from my point of view, I was diagnosed back in early 2009 nearly 10 years ago, I would like to think maybe things have progressed since then? But my Doctor although very kind and sympathetic to my sudden illness, didn't really have much of a clue, ME was diagnosed after a series of tests ruled other illnesses out, by process of elimination if you like. There was NO specialist to send me to, and he struggled with how to treat me. He did on one occasion send me to a counselling support group 50 miles away after doing some research, but not only was the journey exhustasting and draining the councillor was patronising and unhelpful. So I went back to popping pills, that looking back I'm not sure helped, but when you are gripped in the depths of illness you tend to just do as your told.

So what are the symptoms of ME? they vary hugely apparently as does the severity and the length of the illness, although I was told there wasn't a cure, it just might go away over time. 
For me it started after a particularly nasty bout of flu, and from what I have read since, an illness or infection is often the way ME seems to start. Like I say I got the flu, which progressed into a sinus and chest infection, but I just didn't get better in fact as the weeks went on I got worse, those first few months of my illness where the worst in my life. I went from being a busy working woman, with two children to someone, who rarely left the house, and needed looking after a role reversal that didn't sit well with me, and in fact left me with severe anxiety often suffering panic attacks. This was on top of the exhaustion, the headaches, the joint and nerve pain, the weakness of my body, meaning I couldn't lift the kettle or blow dry my own hair. But for me the worst symptom was the brain fog, I just couldn't think and often didn't speak as I literally had nothing to say, I didn't feel anything or think, I just didn't have the capacity. My senses often felt bombarded and I couldn't cope with loud noises or to much stimulation, like watching tv, reading or even looking out the window on a rare car journey left me exhausted. 

BUT after about 18 months the fog started to lift, it was slow going but I started having some good days, days when I could function, hold conversation and start to feel again. Over time the good days outweighed the bad, the bad where still bad, usually spent recovering from those good days ment, a day or two on the couch, battling the tiredness and often in pain, but I was getting somewhere much to the relief of my husband, children and family. It was a very difficult time for them and I am always grateful for how they looked after me. 

Nearly 10 years down the line, I am well, I have never reached the level I was before ME, but I am doing ok. I have ups and downs, and over the years have struggled with holding down a regular job, I did for a couple of years but had to give it up, as it all started to feel too much, I wasn't coping, the fear of getting ill again dragged me down. Although I do not have a permanent job, I do work occasionally at a school, a week or two here and there, and of course my blog although I do not exactly earn much money from it, it is an outlet for me, a place to share my thoughts and opinions something I am proud of. 

I hope this post helps the understanding of what living with a chronic illness is like. We don't always look ill, people often said to me on the rare days when I left the house, oh you are better now then? or you don't look like you are really ill!!!

Think before you speak................

If you would like to read more about ME, the Action for ME website has some very helpful information. 

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  1. My ex-boyfriend's mum had ME after suffering a stroke!! When I first met her she was wheelchair bound, the last time I saw her she was walking unaided :) I'm not sure how sh'es doing now though as I've not see her in years.

    My boyfriend has fibromyalgia so I'm always aware of trying not to say the wrong thing to people.

    Great post to raise awareness :) xx

    Holly |

    1. Thanks for the comment Holly, it's more common than people realise I think, chronic illness sucks, I hope your boyfriend is doing ok xxx

  2. What an interesting post - I must say I haven't heard of this before! I totally understand the point around people don't always *look* ill and actually this is something I've started to be way more considerate about recently. For example I used to get super annoyed when someone would take the lift up one flight of stairs then I started to think - maybe there's a reason for this. Anyhow, thank you for sharing and glad things have gotten a bit better over time! <3

    1. Hi Kemi, thanks for taking the time to read and comment it means a lot xxx

  3. I have heard of ME before and can only imagine how hard it would be living with this illness. I'm glad it has improved for you recently. Have a nice weekend.

    Gemma x


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