Name and No Shame

I read this piece in the Guardian online http://www.guardian.co.uk/lifeandstyle/2010/nov/20/childrens-names-girls-names and it really struck a chord.
As I mentioned in my last blog post, once again someone had trouble with my name. It has been a burden all my life, mis-pronounced and mis-spelled. However, after having had it for 40+ years, I'm fiercely defensive of it.
As you know my name is Jeanne. I pronounce it as "Jan" but with a hard "djih" sound. It's French, for Joan, and was the name of the woman we call Joan of Arc (Jeanne D'Arc) and also of the actress Jeanne Moreau. Watch any French movie and you'll probably hear someone being called it.
The reasoning behind my name comes from a drunken promise my mother (Georgina aka Georgie aka Gena) once made to her's. My uncle had 3 daughters and named none of them after my grandmother and my aunt only had one son, so when she found out I was on the way, my mother stepped up and said if I was a girl, she'd name me after her. The story goes that when I was born my gran came into the ward, scopped me up and declared me "wee Jeannie". My mother was aghast, having picked out a name for me - I was to have been called Julie (Julie Andrew, geddit? My mother was a big fan). Sadly, the baby girl next to my mum died suddenly and as she was also Julie, my mother scrapped the idea. Not wanting a "wee Jeannie" she gouged out the "i" and I became Jeanne.
I have gone by "Jan" and actually spelled it as such in my teens. However, now I like it and I think it's more memorable. I know Americans say it as "Jean" (as in Jeanne Trippelhorn) but I have a figure from my past who was called that so it's a bit hurtful to hear my name said that way.
When my own baby was on the way, our choice for a girl's name was Mhairi but some Gaelic "enthusiast" tried to tell us "it's pronounced Vari when she's there and Mari when she's not" (!) so we went with the "Vari" spelling - we discovered later that it's a Sanskrit name meaning "water" or "sea".
It could have been worse - if I was a boy I would have been Gregor! (Vari would have been Joe after Joe Strummer.)

Radio Ga Ga

Taking my first step back onto the world of comedy, I was on local radio last night. All in all, it was a pleasant experience. I fluffed a bit when surprised and asked for a one-liner (I don't do one-liners - to me it's like asking a doctor you meet to have a look at your boil) but then I came back with 3 great gags about the Royal Wedding, so all was OK. A nice wee studio, nestled in the bottom of a tower block, all friendly people. Being on with Charlie helped and Ross Main was nice (he didn't seem to remember me from the first Spoons and the "Sex And The City" incident!). I think it went OK and the feedback I have had so far is positive.
Just a couple of notes for any DJs -
1) Please don't try to do the transatlantic DJ voice when you have a perfectly nice Glasgow twang.
2) If you promise to do something (like play a piece of music that means something to somebody) either do so or say on air that you can't (in this case because the CD player was acting up). Don't whatever you do, say you are playing my favourite track and then put on f*cking "Back In Black" by AC/DC (which I dislike intensely).
3) Get my name right! That always helps. (On explaining that my name is spelled as it is because I was to have been called after my mum's mum and my mum adapted it to the French speling - "What part of France does your granny come from? Clydebank.)

Back In The Saddle

I may end up with egg on my face and tears in my eyes but I have agreed to do a 5-minute "comeback" spot at Spoons on Friday November 26th. I feel it is time, as Rafiki says in The Lion King.

Update

Sorry for not posting - life's been a bit of a whirl! Vee hasn't been well - she spewed her guts up on Tuesday and was poorly for the rest of the week, so I have been tending to her. Gee has gone off on a stag weekend (translates as 4 guys camping and going to Go Ape!)and we have been stuck in watching doovds - we saw Kick Ass tonight and it was fabby.
I managed to convince my doc to let me try some new tabs - Pregabelin/ Lyrica - and they seem to be working a treat. No pain, head clear for the first time in ages and sleeping about 7 hours a night with no disco naps!
I met up with some other ME patients last week and had a good chinwag - it feels good to meet other people who really know how you feel.
I'm going to be on the wireless on the 19th - nothing stupendous, just on a new comedy show talking with Charlie Ross and Ross Main on a community station. I'm also hoping to have the DJ play Chris Kane's new song "House Rules", which would technically be it's UK debut! And I have been talking with a sketch group about writing and performing. I would like to try for Spoons at the end of the month but we'll see. Definitely want to get back in the comedy saddle for the new year.
Not much else - reading, playing Fable III (it's grand) and listening to music.

Please add your weight for ME

I don't often do this but as you can imagine this is quite pertinent to me.

ACTION NOW are running a campaign for the next 2 weeks and are asking ME patients (that's me) and their family and friends (that's you) to send the following email to ask for a change in UK policy. If you can spare a few minutes to do this, that would be great. Thanks.

Send to:

1) Andrew Lansley, Secretary of State for Health
2) Sally Davies, Chief Medical Officer at the Department of Health
3) John Savill, Chief Executive of the MRC

Contact info:

1) Rt Hon. Andrew Lansley, Secretary of State for Health
Email: lansleya@parliament.uk, DHMail@dh.gsi.gov.uk
Cc: ukpolicychange@gmail.com
Telephone: 020 7210 4850 Fax: 020 7210 5952

2) Dame Sally Davies, Chief Medical Officer, Department of Health
Email: CMOweb@dh.gsi.gov.uk, sally.davies@dh.gsi.gov.uk
Cc: ukpolicychange@gmail.com

3) Sir John Savill, Chief Executive of the Medical Research council
Email: Linda.Willmott@headoffice.mrc.ac.uk (personal assistant's name)
Cc: ukpolicychange@gmail.com
Telephone: +44 (0)20 7670 5155
Fax: +44 (0)20 7580 4369

Message -

"Please would you stop allowing the policy to support the refuted psychiatric model of ME/CFS, which presumes that ME/CFS has no organic basis and is therefore contradictory to current science and research on XMRV and other viruses. Please instead pledge to make a definitive policy change NOW, as patients and their families and friends are waiting.

Thank you.

Yours sincerely,
{Your Name)
Friend of an ME patient

I Got A New Drug

Having had my ME/ Fibromyalgia for 7 years, I have today managed to convince my GP to let me try a new drug. Through the partner of another patient, it was suggested that I try Pregabalin, commonly known as Lyrica. I have to stop my other medication and take this 3 times a day for the next 3 weeks.
I am a bit scunnered, not with my own GP, but that again I have had to go out and find out things and tell him, not the other way aound. He told me that this medication is expensive but hey, I'm worth it! Looking it up on Wikipedia, I have discovered that it has been recommended for the treatment of Fibromylagia for 3 years. It makes me mad that this is not widespread knowledge.
Anyway, just a warning that if I seem a wee bit more doolally than usual, I can blame the drugs. Apparently the side effects are feelings of elation, changes in sexual interest (!) and "an abnormal style of walking". Oh and an increased appetite and weight gain, which kind of go together. So if you see a fat nympho doing Monty Python's Ministry For Silly Walks approaching, please say hello.

No Swings and All Roundabouts

I'm just back from seeing my GP. When I last saw him nearly 3 months ago, he had promised to refer me back to where I got my original diagnosis to see what they were offering now, hoping that they could help me. Today he told me that he had received a reply from the Infectious Diseases team (for lo! that was where I was diagnosed back in 2003) that a) the doctor who saw me has now retired and b) they are no longer seeing ME patients because (wait for it - you're going to love this)"it is not an infectious disease". So why, I asked my doc, won't I be allowed to give blood one week from now?
They have suggested that I now be referred to the Homeoepathic Hospital as they are apparently offering a multi-disciplinary service there. Has anyone else been told this? I'm not holding my breath as I know they have long waiting lists.
So I am home with another load of Amitriptyline 50g. Don't get me wrong, my doctor is very supportive and he is just as frustrated with the lack of services here. And he had never heard of XMRV til I told him!
My brain is feeling very militant (but not in a Tommy Sheridan way so rest easy - I'm too knackered to swing) and if the flesh is willing, I've half a mind to go and try to give blood on Saturday and before they take it (if they do) ask why in 48 hours under law they can't.
Sorry for ranting but ....well, you all know.