Memories, bad dreams and changing names

This is my 2nd blog and my 1st blog entry on this new one 'Space of a ME guinea pig'. No doubt you'll be wondering why I've bothered to go through all the hassle of setting up a completely new blog just to change its name. There are two reasons;

1. I hoped that a blog with more commonly used words would get more hits
2. I wanted to change the CFS/PVFS/ME to just ME

After many years I've decided I like, on the whole, ME as the official name the best. The problem for a long time wasn't sure what the term Myalgic Encephalomyelitis means. Basically its a two words with five parts. My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. ME is the traditional name for the disease, being first used in 1956, whilst CFS wasn't used till sometime in the 70s/80s.

ME  is a debilitating neurological disease initiated by a virus; an enterovirus. The 'ME' part of my condition was almost undoubtably caused by an enterovirus and was certainly pretty debilitating! I did suffer from neurological muscle pain as well. For a while I actually preferred the term PVFS because the condition is so often caused by a virus but now I've learnt that ME is also classed as a condition caused by a virus I've warmed to it.

I found out most of this from http://www.hfme.org/

I had no less than two bad dreams last night. The first one I can't remember; the second was a weird dream made up of memories of when I was little. A male district nurse was the main figure in it. He was very eccentric and dressed up as a teddy bear. The district nurses are two of the few people from those times that I remember with any degree of warmth though they were female.

Dr Wights tests have stirred up memories of those times for me, mostly not very happy ones. They have changed the way I remember them though; before my grief was always mixed up with guilt when I remember how ill I was. In spite of the fact my family and friends have always believed I was genuinely, physically ill there was always a small nagging part of me that held onto the abuse I'd been through and couldn't shake off the nagging doubt that I had had some control over my illness in some way. Since the tests and the recent research findings I've started to believe I was genuinely ill though and to regard it as just one of those bad experiences people go through in life. Like getting divorced or miscarrying or having cancer. Strangely thinking this has lessened my grief too

Current ME campaigns

Update on my progress with the infra-red and naltrexone; The infra-red and Naltrexone hasn't quite had the magical affect I hoped it'd have but obviously I haven't been under the best external conditions for miraculous recovery; first a cold, then the loss of a loved one. I have however made small progress with walking as I now walk around downstairs and in my room a bit whereas before I was completely wheelchair bound. This is mostly due to feeling less dizzy

Any improvement has also been hampered by my sudden complete loss of faith in my sleep pattern. Its alright most of the time just when I'm planning to do something special like, for example, last Saturday I planned to go on a badger workshop and I want to be at my best I suddenly become terribly afraid I'm going to sleep badly which of course stops me getting to sleep

After my cold I had to start building up my tolerence of the infra-red cocoon all over again. I'm now back to being able to use it for as long as before ( 6 mins) though happily. I'm on the full dose of Naltrexone too, 4.5 ml, compared to 1ml when I started. I was very worried when I first caught my cold that my sicky feelings were side affects of my treatments so at least its one small releif that it wasn't.

XMRV; XMRV is a newly discovered retrovirus, related to HIV, that is thought to cause cancer. It has been found in a high proportion of CFS/ME sufferers, according to a study in America. Subsequent research trials in Europe though haven't found XMRV in many of their research subjects, leading to debate, but this could be to do with the differences in diagnoses in the two countries; America has a much stricter (and possibly better) diagnosis criteria than Europe

America is also doing a much better job of dealing with XMRV.  It has commisioned top pathogen hunter Dr Ian Lipkin to carry out further XMRV research whilest the UK officials have merely stated "no public health action is required at this time". It is thought to be transmitted by blood so contaigan could spread through blood transplants.

I think leaving it untill a crisis comes up is a bad idea so have been joining in a campaign to lobby the UK government to take action

"I'm sending this E-mail to express my concern at the government
decision not to undertake research into XMRV as a current priority.
XMRV is a retrovirus, related to AIDS and lukemia. Research suggests
that it could be involved in causing both cancer and ME, common
illnesses in this country. I know these are tough finacial times but I
think the governments decision not to take XMRV seriously, RIGHT NOW,
could have terrible repercussions in the long term"

This is the message I repeatedly sent Andrew Lansley, Secretary of State for Health, Sally Davies, Chief Medical Officer at the Department of Health and John Savill, Chief Executive of the MRC most days for about a fortnight. Though I don't think XMRV is the whole answer to the underlying cause of ME I think all avenues should be explored

Worldwide petition to get access to secret ME/CFS files; This is another campaign I've championed recently. It was started by Dr John Greensmith @ ME free for all whom I'v had reason to talk to in the past. The secret files are held by the Medical Research council and will currently not be available to the public till 2072

For more infomation and if you wish to sign it click here  http://www.thepetitionsite.com/264/--if-gte-mso-9xml-wworddocument-wviewnormalwview-wzoom0wzoom-wpunctuationkerning/

I beleive that with so little infomation currently around on ME, anything that is there should be open for people to read and learn from

  http://www.mefreeforall.org/index.php?id=1

Introducing Jeremy; my hyperactive hamster

Jeremy is a new addition to our family; a hyperactive hamster with an unusually large nose. I took him in from Uncle Allan, at my local RSPCA branch, under the illusion that he was a baby guinea pig but I think I must have been mistaken as its beyond the realms of possibility for a guinea pig to move so fast.

I thought he'd make a nice companion for Barney. He'd become more nervous since Fred died so I decided he needed some more piglet company

Jeremy was one of a family of 6 (including Mum) who came up here after being rescued from Huntingdon in Kent.
Jack and Toby his two brothers

 Autumn and Snowflake his two sisters

Mum on the left, Shelley

His Mum is a ridgeback guinea pig as is his brother Jack also. I don't think Jeremy is. I was actually more attracted by his brov, Jack, partly because he had a crest like Fred. I decided on Jeremy for Barneys sake though as he seemed the more staid and submissive of the pair. Fred had been the more staid and submissive of the two in their relationship so I thought Jeremy would best fill the gap

Example of a ridgeback

Since arriving he has squeaked almost non-stop, done Tom and Jerry style circuts of their cage with Barney at top speed, stood on tiptoe to sniff  curiously through the bars of his cage and the top of the hut, snatched Barneys lettuce from under his nose, and tried to crawl off my bed to go exploring. So much for being staid!

We had a few typical problems introducing him to Barney to start with. Barney was very hopeful that Jeremy was a female pig and kept trying to mate with him. After succumbing to the realisation that hewas just a boring boy though, and having showed him who was boss, they seem to be getting on quite well. They're very comical to see together

My 19th birthday

I had planned a bonfire party for my 19th birthday, just my family and friend Kerry with her boyfriend. It didn't go quite according to plan as, partly due to Freddie dying, I didn't sleep well the night before. I spent all day beforehand in bed, trying to catch up on sleep, but still felt shattered 

It was lovely to see Kerry though and her new fi'ance is very cool. The fireworks were beautiful too

Entering my 19th year (memories of Freddie)

I'm now officially a year older than I was when I last blogged. I can't say I'm sorry to see the back of my 18th year as it was rather stressful from start to finish.

The grand finale of my 18th year was my beautiful baby bear, hairy monster, pigwig thing, Freddie Flintstone passing away. I wasn't expecting it; my Mum just came in on Friday morning, the day before my b'day party and told me he had gone. He'd been fine when I'd fed him the evening before. Freddie was always a little shy but he'd been nibbling fairly normally, snug inside his house. I'd woken up feeling bright and planning the preparations, but as soon as my Mum told me all my energy evaporated.

It was a blow I certainly didn't need. I thought when I started the Naltrexone that it would be the end of all my hard times, but so far all that'd happened was catching a cold, my friend going away to uni, my blog being hacked and now this. I was pretty angry tbh. I felt as if life was spiting me, saying 'oh dear, look theres something that makes Rosalind Amor happy, that'll never do, we'd better put a stop to that'. I know this probably sounds rather overreacting, but my animals are truely the centre of my life, the part that hasn't been swamped by ME. I'm trying to move on and rebuild my life but as soon as put the first block down, life destroys it

A photo of the Flintstones when they were pups with Freddie in his favourite place hiding under Barneys paws. Contrary to the popular cartoon characters Fred was always the shyest of the pair in spite of being twice the size!

Reading an ME magazine. They spent a great deal of time on my bed, cuddling, playing and pooing. When they were little they used to enjoy exploring which often led them to fall off the edge. I remember one incident when he was little and being a bit over frisky when I was trying to rest, picking him up and tucking him under my arm. He did snuggle down with his head resting on my hand but not for long!

In the winter he liked tunneling under the bedclothes and then he'd curl up by my toes. I particularly spent a lot of time cuddling recently as I've been having long rests for at least 2 hours the last year and Fred had better long term bladder control than Barney.

They had an indoor cage next to my bed. 

Feeding. Their favourite foods were celery and home-grown salad leaves. They used to bolt the salad leavesin seconds they loved them so much.

In the garden. The Flintstones were the most outdoory guinea pigs I have ever had. Most of my guinea pigs would simply hide in their wendy houses untill they were taken inside again to their releif but these two actually seemed to rather enjoy it.

A video I made of them one Christmas

Glamour shots of my room

As its been so rainy recently I haven't had much chance to go out to take photos. I've been contenting myself however with taking 'Ideal Home' style shots after reading an interesting peice in 'Digital Camera' about it.

Some of my room;

No rewards for guessing my interests!

I'm getting a new lens to go with my Canon 450D DSLR, a still life table and possibly some  new software for my 19 birthday which is next Tuesday. Am looking forward to it! The lens is a Canon 100mm Macro lens with image stablisation.