Friday, June 25, 2010

What about ME?

I'm sure most, if not all of you have already seen this .... but we should keep spreading this around. The film by Susan Douglas:

By Double D Productions: "We would like you to know about our up coming film about ME/CFS titled, WHAT ABOUT ME?

For full info of the film please visit our official website

What About Me? Trailer - UK from Double D Productions on Vimeo.

What About Me? Trailer - USA from Double D Productions on Vimeo.

Friday, June 18, 2010

the Miracle Cure

I recently asked my friend David what he knew about Ampligen. David is someone I have known on and off for 20 years and he has been living with CFS/ME for most of that time. We live in the same city but because he and now me are both to sick we haven’t actually seen each other in about 6 or 7 years. We do email each other daily though and he has been my sounding board and my mentor. I wish he hadn’t ever become ill and I wish he wasn’t still living with this but I suspect that I would be in a total state of madness if it weren’t for his wisdom, experience and guidance ….. anyway …. He and I had a brief email conversation about Ampligen and I hadn’t realized when I had asked about it just what a loaded subject it was. David pointed me in the right direction and left me to do some reading and I finally understood some of what he had expressed to me over the past 6 months about the negative roll of politics, big business and arseholes who just want to make money off of sick people. Things like Ampligen and more recently XMRV come to light and there is a big buzz about them and so we get our hopes up …. But then either no one is interested in funding the appropriate studies, or the facts get mixed with crap and lies and we are deceived or else ‘the latest miracle cure’ turns out to be false ….

I am starting to see the ramifications of so many broken promises and hidden agendas by governments and big industry including medical related ones. It really does suck. I find that as a newby to all of this I am still hunting around for something that will possibly help me get well even though I am beginning to really understand that maybe it’s just best to live each day best I can and if something genuinely helpful becomes available then I will hear about it. I think I haven’t yet let go of all the things I planned on doing over the next decade of my life. I had plans and I keep thinking that if I just manage to get a little better then some of those things are still in reach ….. I’m not sure if it’s better to hang onto that hope or if it’s better to let it go and just be more accepting of reality???

I asked David what he thought about hope verses reality and this was his response:
It’s not a bad thing to hold onto that hope probably. And to continue the search for as long as you can and/or need to.

Even just for some things to help with symptoms. Because heaps of people have had heaps of help with symptoms. Though still mostly it's a matter of finding the best lifestyle to optimise your own life. There's a good chance you'll be in for the long haul and IMHO we've got to get on with the day by day as comfortably as possible... or we just won't make it -- because, let's face it, it IS a killer illness for too too many. Because this is so fucking soul-destroying.

I've got to remember to get a chair for my soapbox... so it doesn't wear me out so much when I climb up on it.

I’d be really interested in hearing other peoples thoughts on all of this??

Friday, June 11, 2010

HELP !!! haha, did that get your attention?

The first part of my post is a call for help on behalf of Dawn who writes a blog called Daily Life with "Hidden" Chronic Illnesses, please visit her blog here -

Dawn needs some advice from readers in USA. Here is an excerpt from her recent post:
For anyone reading in the US, do you have any experience or advice for proving a claim for CFS under private disability coverage for short term disability coverage (at least for the moment)? Specifically, unfortunately we are covered under the famous company u*n*u*m.

My doctor is very willing to assist with all paperwork and forms, I do have swollen lymph nodes (especially right now), but don't really have any other "markers" - at least that I'm aware of (which granted is limited knowledge).

If anyone has any helpful info then please either visit her blog or post a comment here. Thanks!

Now … what’s up with ME (haha, no pun intended)
My feelings are all over the place this week. One minute I feel hopeful and the next totally hopeless. My sleep has also been total crap this week and that doesn’t help. I find that mornings are generally ok but by evening the nasties that live in my body start to show themselves! By bedtime I am usually really tired but I just don’t want to go to bed because I know it’s going to be hours of not sleeping and I seem to get lots of other yucky things during the night. I can’t really even explain what I mean, I feel freezing but at the same time think I may be too hot and my vision goes all weird and distorted and it’s SCARY!!! Nothing like a bit of FEAR to keep you awake!! Hahaha I’d probably get less spooked if I weren’t here alone, but I am, so bad bloody luck really!

On the upside I have started taking PreDop which seems to be making a difference with brain function and also my general stuff, POTS like symptoms especially. So that is all good news!! I have been this week for more tests to check on HerpesVirus6. I had somehow failed to tell my Dr that I have had Shingles 3 times in the last 18 months, so if my blood shows high levels I may be a candidate for anti virals?? We shall see….

Well that’s about it at the moment I think. Thanks everyone who has been leaving comments … I read them all with joy even if I don’t always get back to you (sorry ) LOL.

Wednesday, June 2, 2010

Ron Mueck on wheels

Well, I did it!
Yesterday my friend Keiryn came and got me and my new wheelchair and took me to the art gallery. It was my first real outing in the wheelchair and in fact my first real outing since getting sick last November. I have to say that I was dead scared! The art gallery is a 10 minute drive which on a bad day is enough to knock me down, and then we'd have to park somewhere and get from there to the art gallery and find the entrance and pay for tickets .... all simple stuff but all tasks that require thought and energy. I was so worried that I'd be wiped out by the time we actually got inside. It was all fine though, for at least 20 minutes. Keiryn pushed me round the exhibits and it was nice. Unfortunately there were lots of people and I found that the combination of lighting and all the movement made me feel really dizzy. I was also having some weird kind of trouble with my vision. I can't really explain it, but it was weird.

Aside from the scary stuff and feeling dizzy and odd, it was totally fab to be out somewhere nice and the exhibition was FANTASTIC. The photo is one that I took (the artist - Ron Mueck encourages people to take photos). Ron Mueck does these unbelievably lifelike sculptures of people but they are either huge or tiny. Very talented man. Oh, the other thing that happened which I hadn't been prepared for was bumping into someone that I used to know before I got sick. He came up and gave me this look of disbelief and said 'so what's with this', meaning the wheelchair. I didn't know what to say .... I just kind of said 'um, nothing really' ... It was a strange encounter and reminded me very much of what it had been like bumping in to people after my partner died. Neither of you know what to say and it's just awkward.

Anyway, I was expecting to have huge payback with flare up today, but so far nothing major .... so fingers crossed that it doesn't arrive tomorrow instead hahaha.