Just one good reason for ME/CFS Awareness Week – 8th to 14th May

This video ( http://www.youtube.com/watch?v=nabLrB7Ls9s) is a great explanation of what people with ME/CFS and other ‘invisible’ illnesses really need and explains what might possibly lead ‘one’ to believe that ‘one’ is not actually ill.

I’m still feeling a bit bruised from someone, who has been an acquaintance for almost 20 years and a friend for at least 5 years, telling me i was a liar (virtually) and that there was nothing wrong with me.  It was Christmas and we were both out on the town – in my case i was out for an  hour in total and it makes me feel a bit better, even though it’s slightly bitchy, to say that she had most obviously been out for most of the day. All i wanted to do was tell her how nice it was to see her and that I’d missed her and that i was sorry i hadn’t seen much of her (i’d had to turn down a couple of requests to go out drinking with her) but that if she ever wanted to come round to my house one night (we’d had a lovely night a few months before having some food, a drink or two and a laugh at my house) then id really love to see her but because of my ME it was really hard for me to actually go out for a drink with her.

I was out with my partner which is easy because he organises getting there, looks after me while we are out, makes sure i can sit down if i need to, keeps on eye on my body temperature by  keeping an active watch on me to ensure i don’t get cold, gets me warm if I do get cold and then makes sure we get home safely – easy peasy. I’m not even sure if he knows he does all this (or if he knows i know he does all this) and whether its just instinctive with him because he was doing it for years – even before we knew that i had ME. I certainly used to take it for granted before i knew i was ill, and maybe there’s something to be said for the fact that maybe i took it for granted because i was ill. It  makes my life so much easier,  i really appreciate it and it makes me love him all the more for it. [Thanks darling! And if there’s ever anything, you know, that i can do for you ………  😉 ]

Anyway, this woman, who should know me better and who should know better because she actually works as a home help for at least one person who has severe ME,  tossed her hair when i got to the bit about finding it hard to go out for a drink because of my ME and as she walked away, still hair tossing, said, with an extremely visible sneer, ‘”There’s nothing wrong with you Sall! Its just an excuse!” At the time i was gutted (and annoyingly a bit emotional because of my ME) but in hindsight, and with a few hours counselling (as we do) from various true friends, i can see that i am much better off without her. She probably has a chip on her shoulder, takes my actions personally and that there are some self worth issues going on there – I can also see that there is something really wrong with someones thinking if they truly believe that anyone would actually lie about being ill so as to avoid a night out with her.  Doesn’t stop it hurting though :-(.