художници на икониI am absolutely disgusted with this article in The Sun:

http://politicalscrapbook.net/2012/01/rod-liddle-disabled-the-sun/

At the weekend, I found an old CV of mine. I looked through it - I have a LOT of qualifications, which are very good and I PAID to do them. I have a lot of experience. When I had my first big ME/CFS relapse, I had just got engaged and was working my way to becoming a Microbiology Technician with a degree in Biomedical Science. I was unable to work for several years, mostly due to the fact I was rarely able to get out of bed. As SOON as I was able, I took a part time job (still not up to working full-time) so I could afford luxuries, like wedding rings. I was unable to return to my old career, so I PAID to completely retrain as an administrator. I took a crash course in office skills, over six weeks, and within a couple of months, had secured a full time job in admin. It was a constant struggle. I completely went without a social life in order to maintain my job - both would have been impossible. I would often go home on a lunchtime, for a nap, just so I could get through the day.

Finally, I found a balance. I was working full time for a while and was able to socialise (to an extent). Then, in 2002, another relapse hit and it was worse. Worse in a number of ways: this time, I was the main wage earner; we had a house to pay for; a dog. I tried to do everything right, this time. Fighting it was futile and because I’d tried to be ‘normal’ for too long, instead of admitting I was getting poorly again, it hit me harder. So, once again, I had to give up a promising career, lost friends (who wants to bother with someone who can’t go anywhere or, often, can’t even hold a conversation), had to cut everything back to keep a roof over our heads, had no social life and had to watch the world pass me by for years. It’s undignified to have to ask for help to do things (like getting upstairs or washing your hair), that you’ve always taken for granted.

What I’m trying to say is, who would choose that life? Who would say that this is a ‘pretend illness’ if they had any experience of it? I’ve had ME/CFS since I was 12 and certainly couldn’t have kept up this pretence for 25 years. I miss kick-boxing, dancing, being able to go out on my own, having an income, etc, but I’d still rather be me than that disgraceful excuse for a columnist, Rod Liddle. Bullies always attack those who are least able to defend themselves.

Haven’t posted for a while as Christmas is tough on people with ME/CFS, among other people - the work involved doesn’t stop just because you’re exhausted! Anyway, I hope that you all had an enjoyable festive season, and that 2012 will be a positive year for you.

It’s time for my recap of the year. I used to always do this on the first page of a brand new diary, when I was a teenager, but now it’s the blog! The start of 2011 was a cold one and a sad one for us: our first dog, Holly (who I took my writing name from), died on 18 January, aged 12. I was with her when it happened and it was heart-breaking. She was one of the family and we miss her every day. We could never replace her, but felt the need to get a puppy. We had no intention of getting another tri-colour, but it seems that Ivy chose us. You can keep up with her advertures at http://ivythecavalier.wordpress.com/

Aside from welcoming Ivy in to our home, there were lots of good things such as new babies within the family and plenty of engagements amongst friends and family - 2012 sees us celebrating with 3 soon-to-be-married couples so far. I love weddings, though I’m feeling the pressure of being a Matron of Honour (how old does that make me sound). I worry that the ME/CFS will make its presence felt. We’re happy that our friends have entered the final phase of their wish to move to New Zealand, but will miss them a lot. I value my friends, as so many disappeared over the years. When you can’t socialise, you find that you’re no longer included in people’s lives. Sad but true. In the summer, we went to see Mrs Browns Boys with my parents - it was hilarious. I haven’t seen my dad laugh like that, ever. In fact, I didn’t think he was capable. Needless to say, we booked tickets for this summer’s show too. There are lots of milestone birthdays and celebrations due in 2012 - a 30th, a 21st and a 40th anniversary, to name but a few.

Last year, I tried to volunteer to do some things that I felt I was able to do. I can’t say it’s worked out as planned, as I’ve been sidelined (which actually makes me feel worse than not been accepted as a volunteer). On the positive side, our annual fundraising event for Marie Curie was very successful, with the support of fantastic family and friends. It makes me feel good to do something for others as, so often, I feel useless for the things I can’t do. Nice to be able to help.

I discovered that my publisher was no longer in business - can’t say I was sad for them, but I was for the staff and the other authors. This made me look at writing again, so I am still in the process of trying to turn Karma in to an e-book. I’m glad it belongs to me again. I also took a big step and signed up for a creative writing class. I didn’t know what to expect, and I’m very uncomfortable in reading my work aloud, but I was pleasantly surprised. It took a few weeks for the group to gel, but I like it (though I do wish it was an afternoon, rather than a morning - I really, really struggle on a morning). It resumes in January, and I’m seriously considering returning. I’m also contemplating my own version of NaNoWriMo in January, to get me focused on novel 2 - it may not happen, but I’m going to give it a go. Then it can be an e-book too! I’m also still working on my degree. It’s very tough, as I’m unmotivated and fnd it difficult to concentrate. I can’t attend tutorials, due to the CFS, and I almost quit when I discovered there was an exam. My ability to retain knowledge is terrible - I used to have an almost photographic memory, but now find learning difficult. I just want to prove to myself that I’m still the person I was before the CFS made its presence felt!

I’ve been invited to do some things and my instinct is to say no, but I had hoped to try and do more adventurous things (mundane to you, adventurous to me). I haven’t made resolutions, but I do have an ongoing Wish List, which I re-evaluate every year. Many of the things on my list are restricted by the fact that I’m ill, but more so because of the fact that they cost money (which is DUE to the fact that I’m ill). I’d love to be able to drive, and that’s been on my list for about 20 years now, but it could be there for another 20 years! Last year, I impulsively signed up for a few things and then fretted about them when I was accepted. However, if I hadn’t, I’d have missed out on some fun opportunities, like being in BBC Good Food magazine and being a Morrisons Taste Tester. Maybe there’s a lesson in that?

I’ve probably waffled on enough. I hope that your year has far more good things than bad things, and that your wishes are within your grasp. Happy New Year to you all. x

I’m sorry I haven’t been keeping this blog up to date, but I was ill over Christmas. My first priority is to wish you all a happy and healthy 2010.

The thing that’s prompted me to write on here is a poll on the Daily Mail website entitled: Is ME A Genuine Illness? Readers of the site are invited to select Yes or No. I’m not only incensed about the callous poll, but about the caustic comments left by some people following various articles on the topic.

So people don’t understand ME? Neither do we and we suffer the day to day (or hour to hour) effects. Neither do the doctors. Just because we don’t understand something, must we dismiss it as false? I would never be so arrogant.

It was the Press themselves who created this stigma for ME sufferers. It began in the 80s (when I was first diagnosed) and they coined the term Yuppie ‘Flu’. Since then, the Press has continued to paint a negative view of those who have to live with a condition that can neither be treated nor explained. Some of the comments left state that they saw someone from ME doing chores or going shopping. How dare they? I, like many other sufferers, often hide how I am feeling in order to maintain some level of normality. Only close family and my dr saw me at my worst because I don’t WANT people to think of me as fragile or incapable. I still have my pride. 90% of my life is spent at home.

There are always going to be people who abuse the term or are misdiagnosed (and recover miraculously) or self-diagnose; this happens with many conditions. Don’t take it as red that someone who has ME is one of those people who simply doesn’t want to work. Most of the people I know who have the condition have lost a lot: jobs, friends, homes, marriages, social lives, etc. We try to do what we can, when we can DESPITE M.E., rather than use it as an excuse to do nothing.

Someone suggested that ME sufferers just whinge all the time: why would we if there was nothing wrong with us? Touche!

I could rant for ages but, ironically, I’m too tired. I actually had an update about my writing but that will have to wait!

I know I haven’t posted for ages, but I was hoping to do something with this out-of-date website. As you can tell, nothing’s happened with it.

I’ll let you know what’s been happening: I spent a LONG time contributing to an interview that was to be featured in Psychologies magazine in their January 2010 issue (out now). It was all about teenage diaries (like in Karma) and how it felt to re-read them. It was also about how things had changed and what the person you were then would think of the current you. I did a telephone interview and many email follow-ups. It was quite emotionally exhausting to revisit the past, discussin things like my ME/CFS and my enforced changes in career. The journalist told me I the mag would send someone to get my photo (if they wanted one) but lady from Psychologies emailed me to ask about me coming to London for a photoshoot. Obviously, this was out of the question. I explained that it would be a 3.5 hour journey there and a 3.5 hour journey back (that was just the train part of the journey) - I wouldn’t have been able to function at an afternoon photoshoot. They came back to me and said they’d arrange travel for me and there’d be somewhere I could ‘rest’. Still no go, so they relented and said they’d send a photographer and a hair stylist to me. Yay! I wouldn’t miss out!

They said they’d be in touch about the shoot, so I curtailed my activity (basic though it is) so that I could participate fully in the photoshoot. I waited and waited. Eventually, I emailed the journalist, who didn’t even reply to me. A few more weeks went by, and I realised that they probably weren’t going to get in touch. I emailed the Psychologies lady, saying, “Have I been dropped from the article due to my ME/CFS?” The only response were the following words, “Yes. Sorry.” She didn’t even address me by name. It made me feel bitter, as they’d always been aware that I had the condition. Perhaps if they’d even contacted me, so that I wasn’t resting up ALL November…

Speaking of disappointment, I’ve heard a lot of people talking about Gumtree, so when I decided to sell my netbook (barely used it, despite thinking I’d take it everywhere and write every day) I posted an ad. Within a few hours, several people had already decided to try and relieve me of my netbook in a non-legal way. Fortunately, I’m quite savvy to various scams, and didn’t fall for them. However, it has made me very cynical about selling on the internet (ok, MORE cynical).

As for the writing, what writing? A New Year’s resolution? Thought I’d made some progress in getting paid by Discovered Authors (almost 3 years since Karma came out and they still haven’t managed to pay my meagre royalties). It’s now a principle. Would be nice to get it before Christmas, but I have my doubts.