I know I’m repeating myself, but I still can’t access the email address that the ‘Contact Holly’ messages go to. If you do want to message me, you can find me on both Facebook and Twitter. Why-oh-why is there no ‘forgotten password’ button on my webmail account. Madness!
…and so have I, if I absolutely have to go out. And sunglasses (indoors and out). And factor 1,000 sun cream.
I thought I was one of a small few who hated the hot weather but, as it turns out, I am one of many within my Twitter circle. It’s not just the ME sufferers, either. Lots of people are not happy with the high temperatures this weekend and many, like me, are actually in semi-hibernation! If you could see me now, you’d see I was in my short PJs in the living room, right next to a fan/air purifier. The thick curtains, as well as the blinds, are closed and I’m surrrounded with dogs, all flat out. I have Reverse SAD and get miserable when the summer arrives. Honestly, it’s a real thing!
I reserve the right to complain about the hot weather, as I didn’t have a good moan during the rain or the snow. I’m not one of those people who says, “When’s the summer coming?” I’m one of the people who says, “When’s the summer over?” As you bask in the sun, spare a thought for the pasty, pale few who spend the summer indoors, trying to avoid heatstroke and horrible headaches!
Still have no email access, but you can find me on Facebook, if you want to leave a message. Just look for Holly A Harvey and leave a post on my wall.
Apologies to anyone who’s emailed me or used the contact form - I’m currently locked out of my email account and there’s nowhere for me to retrieve my details. Very frustrating. Just so you know I’m not ignoring you!
Bad timing, but I feel we’d have the same amount of coverage whether our government had changed or remained the same.
Despite looking through the news on Yahoo, there’s no mention of the Day, although Burglars’ Diets were discussed. Madness! We deserve a mention, and we deserve a mention without use of the term ‘Yuppie Flu’. We deserve to be taken seriously, instead of a condition that has destroyed lives constantly being treated in a flippant manner, due to ignorance (and I don’t mean that in a horrible way). I know that I, and many other sufferers, feel neglected. Little research is being undertaken, little funding is given our way and, it seems, that the ME/CFS charities out there are doing us a disservice by not publicising days such as today. Surely if anyone should be standing up for us, it should be the charities!
Back to flippancy: I follow @Jason_Manford on Twitter, and he made an off-the-cuff comment asking what that illness was where people were always tired, because he thought he had it. One of his followers replied with the comment ‘lazyitis’. That tends to be the unspoken opinion about us, that we are lazy. I know a LOT of ME/CFS sufferers and none of them lazy. Imagine feeling tired, exhausted, lethargic with aching joints, headaches, muscle pain, and still trying to do what everyone expects of you. Imagine the strain of trying to appear ‘normal’ on the rare occasions that you feel able to socialise, and knowing that you will pay for the effort you make, in terms of not being able to function properly, but not knowing how long that will last. Imagine feeling so fatigued that holding a conversation or even sitting up is difficult. It’s not a joke or like being ‘a bit tired’, is it? That said, I do have a sense of humour and can laugh at myself (Steve Coogan even mentioned ME/CFS in his Alan Partridge show, and it was funny). If I couldn’t see humour in my situation, I would’ve gone insane by now!
Personally, I had a pretty good life in between relapses. I’ve had some good careers (trainee biomedical scientist, administrator, local government, trainee Counsellor - gone), some great hobbies (kickboxing, gym, socialising - gone), some great friends (or so I thought - gone), an income (gone) and fun (still try and have fun, but it no longer involves the activities I used to enjoy). You could not call me lazy (although you could, and I’d probably be too knackered to do anything about it!)
It’s important for sufferers to remember that a diagnosis of ME/CFS is not the end of life, just life as you know it. You are as valuable as you were before, but you need to adapt to the person you are with ME, rather than hanging on to who you were. I’ve done some pretty amazing stuff that I probably wouldn’t have done when I was well and I’ve met some amazing, inspiring people. I’ve seen the worst in people, but I’ve also seen the best. I still hope I’ll get better, but I’ll still get on with things as they are and will cherish every single ‘good day’ or even ‘good hour’ that I have.
