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!

Tesco in Hexham: my grandma took ill in there yesterday, and the staff were extremely helpful. However, I found it really hard to find an address to email them a ‘thank you’. It’s really, really easy to complain, but people should be encouraged to give positive feedback as well. After a trip to A&E, my grandma is fine. Well done, Tesco.

Discovered Authors: I FINALLY got my full payment from them. I’m delighted to draw a line under this, and I’m assured that I was just one of the few that fell through the cracks (maybe it’s because I’m so thin). And apology would have been nice, but the money I was due is just as welcome!

Royal Mail: after lots of to-ing and fro-ing, I finally got a message to say that they would be paying compensation for the item that they lost. It’s a shame that I’ve had to jump through so many hoops, but I’m glad that they’ve recognised that there was a problem and have tried to rectify it.

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.

Ooh, I’m simmering with anger and am also quite upset. @RoyalMail (twitter name) should be ashamed of themselves.

I foolishly thought the intervention of @RoyalMail Twitter Team would mean this farce would get sorted out. However, after email tennis with them, I ended up feeling worse. Each reply I sent was responded to by a different person (some ore helpful than others). They said that, without the sender’s address (which I don’t have) they won’t consider my claim (although I did have the proof of postage, detailing where and when the item was posted). They emailed the sender, who didn’t respond - not my fault and why would she care, to be honest, as she got her payment. People have better things to do than help others, I guess. Why won’t they compensate me? Well, one person implied that we could both be requesting compensation - I pointed out that the sender didn’t need compensated: I upheld my part of the contract (unlike @RoyalMail). I also pointed out that they had all the details from the proof of posting, so would have had it on record, had the sender tried to claim. They didn’t want to hear logic.

They asked me to call them (despite me pointing out many times that I can’t do telephone calls when my ME/CFS’s bad) so they said they’d call me that day (last Friday) when hubby was home. They didn’t. Hubby tried to call them. Went through lots of menus (on his lunch hour) to hear the dreaded “we’re busy, call again later” message. Lunch hour wasted. They finally left a message on the answerphone saying someone would discuss ‘payment’ with us. WooHoo! At last, we thought, so hubby rang them last night. Person dealing with it wasn’t in, but hubby got same old story from person he spoke to. Back to square one, but he was told someone would ring him today.

Today? Still wasn’t the person who was supposed to be dealing with our claim, and was not interested in paying us. What really, really upset me was that they implied AGAIN that I was trying to scam them! This is despite me providing emails, receipts, etc. So, if you ever send anything through the post via @RoyalMail, you must be able to quantify it and, apparently, receipts just aren’t good enough. Talk about adding insult to injury. Don’t worry, I won’t let this rest, as it’s so wrong that they can behave like this. Hubby asked if they contacted Police when things repeatedly go missing - their response? They deal with it internally. Yes, by trying to blame the customers! Rant done, for now.