Journal of IiME Volume 9 Issue 1 Meanwhile, since the array of symptoms is so splendid and wide ranging, I battered my private medical insurance looking for another answer. Because, and I’ll say it again, I didn’t want to be ill with CFS. It was impacting hugely on my life. I had to take seven months off work, dropping my wage (forcing my husband and I to move out of our home). I had to call on all my reserves to try and ‘hide’ as much of my illness as possible from my 3 year old daughter – struggling with the guilt of knowing I couldn’t do the things I wanted to do with her. I was missing out on her life. I was missing out on my life. Days went by in a blur of pain and frustration. During this time, a third consultant ran more blood analysis and discovered that I was testing off the chart for the Epstein Barr virus. That was a high point. Why? Because it proved that something had caused this. Glandular Fever, Lyme Disease, Epstein Barr . . . these are just a few conditions that can trigger CFS. And this diagnosis validated me, even if it didn’t help the symptoms. So why was it that important to be validated? Because, by then, I was aware that many people just didn’t ‘get’ this condition – and many others didn’t believe it existed. People who I thought were good friends didn’t bother keeping in touch to see how I was. I knew that if it had been any other complaint, which didn’t carry the CFS stigma, I would have had their sympathy. CFS – Clearly Fake Symptoms Even now, having returned to work (again, most CFS sufferers want to work. They don’t want their lives to be put on hold. They are not using it as an excuse to opt out or take the easy route) I still face the flack – more so, because people assume that if you’re working you’re ‘cured’. So I often hide how I’m feeling – not wanting to bore people. May 2015 On days when I tell people that I feel bad, I’ve had comments along the lines of ‘Oh, I feel like that too’. Or ‘I think I might have CFS’. No, you don’t. CFS isn’t feeling exhausted because you’ve had a late night or it’s four days into the week and you’re ready for the weekend. It’s not feeling like you’re getting older and could do without a commute now. It’s unrelenting bonecrunching fatigue, combined with headaches, aching limbs, a low-grade sore throat most of the time, the inability to plan ahead (even for nice things) because you don’t know how you’re going to feel this time tomorrow. It’s keeping everything crossed that you’ll be able to attend a friend’s wedding. It’s giving up socialising. It’s no holidays for three years (even though your addled body could do with a week on a beach) because you couldn’t even take the journey to the airport, far less the plane ride itself. It’s going to bed early, waking up and still feeling as though you haven’t slept. It’s climbing out of bed bent double because you can’t straighten up. It’s either missing taking your child to the park, or going but feeling like death – watching her through tear-filled eyes as you realise that this is time you’ll never get back but simply can’t enjoy. It’s rushing bedtime stories because, some days, you can barely keep your head up. It’s not watching your favourite programs when you’re off work sick – because this isn’t a cosy-up and ‘enjoy’ kind of ill – it’s an obliterating type of illness. It’s feeling that every day’s a battle and there’s no knowing if or when that battle’s going to end. But the worst part of it all is the endless lack of understanding. People who are supposed to be friends don’t even bother to see how you are when you’re ill. Why? Because they believe that you’re malingering? That you’re faking your symptoms? Using CFS as an excuse to work from home? Because they think that, surely, you must be exaggerating and nobody could be ill for that long? I don’t have the answers – all I know is what the reactions are. The only bright spot is that my employers have taken this on Invest in ME (Charity Nr. 1114035) www.investinme.org Page 35 of 57

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