>100 Books Club – Pages Goal!

>As of 12th Oct 2007, I have read 84 books and 26,402 pages this year.

Yup, I finally got the page properly updated. In terms of actual pages I have surpassed the goal (25,000 pages or 100 books) of the 100 books club. I’m not there on the number of books but suspect I will end the year a lot closer to it at the very least.

Looking at my list, it’s strange to see how many books I’ve read this year and sort of forgotten about. Like The Other Eden, that was a really great book, sort of historical fiction. But I had to stop and think what it was when I saw the list because it had slipped my mind.

Just before I started the 101 in 1001 challenge I wrote a list of books I wanted to read. And one of the goals on that list was to read all of them. But then I lost the list. So I decided that if I completely the 100 Books club challenge I would consider it met. If I hadn’t managed that I planned to write another to read list next year and work on that. I will probably still do that – but with the completion of the challenge I’m ticking that off of my list. For a total of 30 things completed.

>Guilt, Guilt, Guilt!

>Today is a tough day.  I am very glad it is nearly over!

I’ve been trying (and failing, I might add) to write out and explain the whats and whys and wherefores for some time.

The short version is the battery on my powerchair died on me in town earlier and I had to call in favours to get me home and get some of the things I was trying to do done like fetch my meds and do some shopping for me.  It was hard for me to ask for those and I felt pretty guilty that three different people had to put themselves out to rescue me and help me out.  Believing that I have CP, it doesn’t have me might be a great attitude to have most of the time.  But sometimes I have to ask for help and that’s not easy.

Then a right gossipy cow I sort of know eavesdropped on a conversation between me and one of my “rescuers”.  She could have just said to me “oh i don’t know if you know but disabled people can blah blah blah, that might be easier for you.” but no, I could told I should have done blah blah blah and saved my friend running around after me.

Yeah, thanks for that, love, I do guilt well enough on my own without you trying to pile more on me.  And the way you then told several people that my chair had died on me?  Nice, that.  Really nice.  Particularly as that’s the second time in a month you’ve  done the eavesdrop and spread it about thing to me.

I am very very grateful to have the friends that I do – the ones who rescued me today and the one who rescued me on Saturday when I locked myself out (my parents are on holiday).  Even if they do sometimes (today) tell me to shut up – because I couldn’t stop saying how sorry I was and thank you for helping me etc etc ad infinitum.

It might not be quite time for bed yet but I think it’s definitely time for chocolate!

>Look Great in 2008

>It’s Wednesday.  And on Wednesdays I check in for Tales from the Scales.

My scales seem to be broken because they wanted me to think I had lost 40lb in one week.  One week, people!  totally not possible, although a lovely number to see!  So I suspect a new battery will be being bought at the weekend or maybe some new scales.

I’ve still been pretty  crazy busy over the last week, travelling all over the country to see friends and having a surprise visit from another friend.  So I haven’t been focusing too much on the weight loss thang.  And I have been drinking cocktails.  Cocktails are yummy and they did a lot for my cold which is finally now beginning to clear up.   So not much focus on anything related to the challenge but I start again today.  It’s always been a part of my plan to allow myself flexibility and not to deny myself anything and so I don’t feel guilty about this week.

One thing I have noticed a couple of times this week is that I’ve been mindlessly eating.  BUT the fact that I realised and stopped is a good thing!

Measurements again next Wednesday day, it’s very tempting to do them today but four weeks seems like a better period of time to leave it methinks!

If you have a spare couple of minutes and don’t mind my going completely off the weightloss topic, please take a look at these links below, they mean a lot to me.

Petition being run by Scope for the human rights of disabled children and against the Ashley “Treatment”

Entry I wrote explaining why this topic is coming up again and linking to information about the so called “Ashley Treatment”

>Ashley’s Back

>Well, it looks as though the Ashley Treatment is about to hit the headlines again. A quick trip thru the blogosphere suggests that no one else has mentioned this yet and maybe no one else cares. But I do.

A mother has asked that her 15 year old CPer daughter undergoes an unnecessary hysterectomy. Different sources online suggest that the surgery is “being considered by the doctors” and that “a doctor has agreed and is seeking legal advice/permission”.

From The Times:

A severely disabled teenager’s womb may be removed to improve her quality of life, and not because it is medically necessary, in what is thought to be a British first which has reignited debate over medical ethics.

Disabled charities yesterday condemned the plan while experts in the field cautioned against proceeding with such radical surgery before all other options were exhausted.

Doctors are seeking legal approval to perform a hysterectomy on Katie Thorpe, 15, in a radical solution to her mother’s fears that the girl, who has cerebral palsy, will not be able to cope with the onset of adulthood.

Alison Thorpe wants the operation to go ahead at St John’s hospital in Chelmsford to protect Katie from the “pain, discomfort and indignity” of menstruation.

Legal guidance is being sought because Katie, who cannot walk or talk and is believed to understand little of what is said to her, is unable to give consent.

News of the procedure sparked controversy yesterday, with charities denouncing the surgery, describing it as a “breach of human rights”.

Simone Aspis, of the United Kingdom’s Disabled People’s Council, said the operation was “unacceptable” when Katie could avoid menstruation through alternatives such as the Pill.

“Katie, like any other nondisabled teenager, has the right to grow up with her body intact, and where she can have the same choice as anyone else to give birth to her own children.”

She added: “We know of plenty of disabled people both with physical impairments and learning difficulties who give birth to their children and are great parents. This is nothing more than eugenics and abuse of Katie’s human rights.”

Gary Birkenhead, head of the programme development unit at Scope, the disability charity, said that while it was tough to bring up a disabled child, “that is not a reason to have to go to these lengths”.

However, Paul Hardiman, a consultant gynaecologist at the Royal Free and University College London, said the matter was not black and white. “I think you have to balance the protection of her human rights against the distress she is going to suffer if something isn’t done,” he said.

But he added that a hysterectomy was a radical and irreversible procedure that should only be considered as a last resort because less invasive options were available.

Faced with a patient in similar circumstances this year, Dr Hardiman recommended a device that releases hormones when it is inserted into the womb, slowing down or stopping menstruation. “It is as effective as sterilisation. but a key issue is that it is also reversible. A hysterectomy seems such a major and final thing to do to somebody.”

Doctors initially suggested contraceptive pills and injections to stop Katie’s periods starting but Ms Thorpe ruled them out because of the risk of her wheelchair-bound daughter suffering from thrombosis.

She said the decision to go ahead with surgery was an agonising one, but she believed it was the right one.

She told The Sunday Times: “Katie has an undignified enough life without the added indignity of menstruation. She will not understand what is happening to her body and it could be very frightening for her.

“Katie would be totally confused by menstruation. She could not manage it by herself. She could not keep it discreet; she cannot be private.”

The case echoes that of an American child known as Ashley X, who underwent surgery and hormone treatment to keep her at the size of a six-year-old child because her parents believed it would make her life more comfortable. When her case was made public in January, her parents’ argument that “keeping her small” would improve her quality of life was criticised by advocates for the disabled.

Ms Thorpe, who looks after Katie around the clock, said that her critics should “come and spend a week with me, walk in my shoes”. She said: “I’ve spent 15 years with my daughter. As a mother who loves her dearly, I am trying to do the best I can for her. I believe this is right for my daughter. It might not be the right thing for other children with cerebral palsy, and I’m not advocating that every disabled girl should have a hysterectomy, but the choice should be there.”

Maybe I’m naive but although I was sure we hadn’t heard the last of Ashley and her “treatment”, I am shocked that we have a case over hear. And even more shocked that it’s for a person with CP. CP, damn it.

I’m not saying that I think this sort of “treatment” is acceptable for some disabilities but not others – just that I never thought it would be considered for a girl with CP basically because of what CP is.

And mostly, because CP is what I have (and it doesn’t have me) and the idea of something like that being done to someone just like me in terms of diagnosis etc doesn’t just sicken me. It scares me.

Some relevant/interesting links

Wikipedia article on The Ashley Treatment.

Ashley’s Parent’s blog

Link to the article online (as reprinted above) with the comments left by people. I don’t know how long that will be a live link.

My original entry on the Ashley Treatment when the story first broke in January

Most importantly – Petition being run by Scope for the human rights of disabled children and against the Ashley “Treatment” 

>Another one off the list

>Well, I suck at not using the computer. I didn’t use it at all yesterday but here I am today. I was attempting to tick “Go at least 72 hours without using a computer” off of my list. but it looks as though another attempt will be needed for that. I am getting a lot better at spending long periods of time away from the computer though. And benefiting from that.

However, I can tick another thing off of my list – I had a massage today. Shoulders, neck and upper back (I was in my chair) and it was lovely. I will be repeating that experience at some point, I can tell you that. It was 15 minutes and I don’t actually know how long she did it for but it didn’t go anywhere near as quick as I anticipated and it was more detailed and intense then I thought it would be. I loved it.

And with about 14 months of days of the 1001 days  left, I have completed 29 things off of my list.

>Craziness

>I’m about to disappear off of the face of t’Internet for a few days.  I’m doing some mad crazy travelling around the country for three of the next five days, visiting friends and pretty much just coming home to sleep and shower.  And I think a break from this virtual world would be good for me.

My real plan is not to come online again until Tuesday but my slightly more realistic plan says not coming online again until Sunday (because that would allow me to tick go 72 hours without using the computer off of my 101 in 1001 list).

I think this is going to be fun, tiring, exciting, enjoyable, relaxing and crazy all at once!  I’m looking forward to it.

>22!

>It seems my gain from last week was related to the fact that the Red Army came to town a day or so later.  For some reason I had lost all track of such things and hadn’t realised from the way I felt that was soon.  Which probably explains why I was so irrational last week.  And this week, all three of the lb I had regained have gone, along with two more!

So I’m down 5lb for a total of 22lb.  And I’m in virgin fat territory again.

I am still full of cold and generally feeling a bit yucky but I went to work anyway and it was ok.   A nap will be required very shortly though.  Just as soon as I eat lunch.

This week I’ve been working on drinking water, next week I had planned exercise as my goal but that seems currently unrealistic so I think increasing my water again is the plan.

>It’s Beginning to Look a Lot Like Christmas!

>And it’s only 1st October!  And it’s looked a lot like Christmas for about two weeks.  Christmas stuff every where in the shops – completely ridiculous.  It sort of makes me mad in a way and it makes me feel really old but I can’t help thinking that it wasn’t like this when I was young (“back in my day…”).  The end of October is more than early enough to start buying sweets and stuff (or even too early still). if I bought them now I would eat them.

But it’s not just shops – my mother brought the Christmas Cake yesterday.  On the last day of September.

In other news, I didn’t go to work today.  This is the first time this year when I maybe could have gone to work and didn’t.  Which is a good thing but also makes me feel bad that I stayed home.  Of course I knew I would sit there wishing I was home if I went.  So instead I stayed home worrying and thinking I should have gone.

I’m still in my PJ’s (with a jst fleece over the top) and I’ve been sleeping lots.  it’s all been rather lovely and I’m feeling better than I have since Thurs.  Currently trying to convince myself that I do not need to text my carer and get her to bring me chocolate and coke when she comes.  The lower number of the scales will be much nicer on Wednesday than the treats would be now, right?