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.

I am delighted to announce that Jonathan Morrell, of Real Radio (and formerly of Tyne Tees) has kindly agreed to join us as our special guest host at the Charity Event, in aid of Marie Curie (Newcastle).

Furthermore, we would also like to welcome local band, Toxic Melons, who have generously donated their time to provide live music at the event.

Remember, the event is to be held at Blaydon Rugby Club on 5th September 2009 and begins at 7.30pm. Admittance is strictly by ticket only and they are available for only £10 per person.

So, for a tenner, we’re offering: a door prize raffle entry, a buffet, a prize quiz, live music, a celebrity host and the chance to win numerous fabulous prizes. There will be optional raffles, tombola, name-the-bear stall and a craft stall, featuring some stunning hand-made jewellery. To purchase tickets for this event, please contact me via the form on this website and I will be delighted to sort them out for you. You can pay by credit or debit card, using Paypal or cash/cheque/postal order.

We have catering to arrange, so would be grateful if you can reserve tickets before 30th August, if possible. We look forward to seeing you!

We finally have a venue for our charity evening and, IF it works out as planned, what a fantastic evening it will be! If you’re in the North East of England and want to have some edfa fun, all for a good cause, contact me for further details.

Tickets will be on sale soon, and will include a buffet and entertainment. I will tell more as and when things are confirmed, but it’ll be worth it for one of Catherine’s entertaining quizzes alone - and maybe your team will win a prize, too? There will be (almost) all the fun of the fair, with tombola, raffle and ‘name the bear’ stalls and I know that there are already some great prizes on offer.

We aim to raise as much as possible for Marie Curie in Newcastle, and I’d like you to help us do it!

So, it’s ME/CFS Awareness Day today. Were you aware? I’m disappointed to say that I have seen nothing in the media today about ME (or CFS, the now preferred term for the condition). Surely the entire point of having an Awareness Day is to raise the profile of the condition among people who don’t know about it. Sufferers are well-aware already. Everyday is ME Awareness Day for us, and our families/friends.

It’s ironic that that day seems to be invisible, as that’s how many people discribe the illness: an invisible disability. Look at my gallery, for example: do I look ill to you? No? Yet, some days it is hard just to get out of bed. Some days it is hard to hold a conversation. Some days are just plain hard. However, some hours are fun. Even knowing that you will ‘pay’ for those hours, they are still worth while. Our lives are one long balancing act: balancing rest and activity; balancing rest and too much rest; balancing need for company and need for solitude; trying to be ‘normal’ while trying to get people to recognise that we don’t feel ‘normal’.

A difficult thing to take is the misconception that ME/CFS tiredness is like being tired. It is not. It is an, often overwhelming, physical and mental fatigue that will not be helped by a nap, pulling ourselves together, or getting some exercise/fresh air. It can be exacerbated by activity, but is not necessarily in proportion to that activity. It is unpredictable, making it difficult to make plans, and making it difficult to socialise (although the internet has been a Godsend in this respect). There are other physical symptoms that sufferers experience to a lesser or greater degree - perhaps this is one of the reasons why we are so disheartened when people describe ME/CFS as a mental illness or liken it to depression. Whose mental state would not be affected if their normal way of life was snatched from them? Anger, frustration and sadness is not the same as depression; depression is a different, and common, condition, which some sufferers do experience.

That’s the way I view the condition, and if you want to chat about it, feel free to join our Facebook group.