Sunday, April 25, 2010

Off the air

Just a quick note to anyone who is interested .... I may be offline for a few weeks. I am changing ISP's and the new company I have signed up with said it may take up to 20 days to get back online ... why so long I have no idea. Anyway if you are thinking maybe I am dead because I have not been posting, you are hopefully wrong LOL.

Oh, and one quick bit of excitement to share .... I got a new TV! Yippee!!

My old one blew up and my Dad was kind enough to buy me a new one! How lucky am I :-)

See you all soon .....

Tuesday, April 20, 2010

Going for a ride in an ambulance.

Oh boy it’s been a yucky few days. The other night I went to bed feeling just as I usually do but during the middle of the night I was awoken suddenly because my body was crashing big time! I came too gasping for air and jumped up realizing that I was extremely dizzy and clammy and my heart was pounding. I felt like I was seconds away from passing out. My first thought was I had to open my front door so that if I died someone would find me. I staggered in a terrible panic to the door and opened it, then lost my balance and ended up on the floor. I crawled across to the phone and called for an ambulance. If you have ever called an ambulance you’d know that they ask you a heap of questions that at that moment seem stupid and irrelevant, I just wanted help!!

When the ambo’s arrived I was still on the floor and they proceeded to ask more dumb questions like ‘what kind of work do you do’ … HELLO I CANNOT BREATHE!!!!!

After getting the niceties out of the way they final did their job and realized that I needed to get to hospital straight away. I was tachycardia and drifting in and out of consciousness. SCARY!

By the time I got to hospital I was shivering uncontrollably, I felt truly awful and really thought I was going to die. After what I thought was about an hour (was actually 4 hours) I was feeling more normal. They did a bunch of tests and concluded that I had a pancreatitis attack. I have had an ongoing pancreas issue. My lipase levels are always elevated. I didn’t have any pain this time but the Dr’s reckon that because of the CFS my body just went into shock and my systems all freaked out. My blood pressure when sky high, my oxygen levels dipped … etc etc …

Today I am at home an feeling exhausted, sorry for myself and my sinuses are screaming!! Which may or may not be a coincidence?? Sometime I think that it’s good I live alone because having people around zaps what little energy I have but when stuff like that happens I realize that living alone could well and truly be the reason people like us sometime die or suffer unnecessarily. It’s a real catch 22.

Oh and to top it all off …. My TV blew up the other day!!! Hahaha.

Saturday, April 17, 2010


I know I only just posted something but I just stumbled upon an article that I thought was fascinating and I wanted to share it. Click HERE.

I also found this video which is somewhat good but also somewhat annoying, typical media hype stuff ... what do you think??

Friday, April 16, 2010

Night terrors, dreams and things

Since I first got really sick last year I have been having odd dreams and nightmares pretty much every night. I have spoken to a few other people who have had the same experience. Perhaps there is a link for us?? Mostly the dreams are just unsettling situations that I am unable to resolve so I often wake feeling on edge or upset etc.

Last night I had a dream that I think was of real significance which is why I am bothering to mention it. In my dream I had CFS and that was the first time I have dreamt of myself that way. Up till now when I appear in my dreams I am still well and able to do everything that I used to. This morning I feel like it must signify a true acceptance of ‘the new me’. I had been thinking about my life the other day and I came to the conclusion that I was still in denial to some extent …. Well maybe now I am not!! I think it’s a good sign. I really believe that in order to be happy you have to accept yourself as you are, whatever that may be. So, yep, it’s a good thing!!

The other thing I will mention but I don’t want to dwell on is that I think I am have a relapse. I had started feeling somewhat better with doing the graded exercise and my little art projects but in the last week I have really gone down hill again and I can’t see any obvious reason for it. Each day I have just felt worse than the day before. So I will sit back and rest and see where it goes…..

Friday, April 9, 2010

Comparing XMRV to HIV is a mistake

This kind of media attention is going to cause hysteria. I have already had one friend say that she cannot visit me because 'it' is apparently like HIV and she doesn't want to risk catching 'it' ..... fanbloodytastic! This media stuff is just gonna cause more isolation and condemnation for those of us who are unfortunately ill ....

I am just old enough to remember the hysteria that occurred in the very early days of HIV. This was largely due to the fact that no one initially knew how it was transmitted. All the media could say at that time was that it was a 'gay' disease, which we now know was totally wrong. The media labeling HIV a gay disease condemned all gay people and it was just awful. I remember walking to work past a factory and having 40 or so workers scream 'AIDS victim' at me, and this happened everyday. I was also spat on, had things thrown out of vehicles at me and beaten up twice and all because the media had hyped the situation up so much that everyone was terrified of gay people in general. For the record I do not have HIV.

We who have CFS DO NOT want to suffer that kind of trauma! I wish the media could be a little more responsible. Yes, there are similarities between XMRV and HIV but not in the way the general public might assume. After all these years if you say HIV some people still automatically think 'filthy dirty unnatural sex acts'. If it turns out that many of us do have XMRV we don't want to be tarred with that misinformed brush. The media need to mention exactly what the common factors between HIV and XMRV are and also talk about how one contracts the virus. As I said, I have already had one friend voice to me that she is scared to visit me in case she catches it .... This is no way to live and I do not want to feel more isolated than I already do!

I do agree that banning blood donation until ore is known is a smart thing to do, my issue is with media coverage that’s all.

What does everyone else think??

Sunday, April 4, 2010

Feeling GREAT (for an hour or two)

Hmmm … something seems to be changing. Over the last two weeks I have noticed that I have felt somewhat ‘better’. Actually I’m not even sure it’s better, just different. I seem to have a period every afternoon when I feel really rotten but mid morning to mid afternoon is pretty damn good. Early morning and night time are just average crappiness. But there does seem to be this pattern now, which wasn’t there before. The only thing that I am doing differently is that I started my graded exercise program. It’s very minimal, basically I walk for 3 minutes a day blah blah blah, so I doubt that it’s what has caused the change. Other than that it could be that I am mostly sleeping better. I am taking a small dose of Endep each night and it has started working for me, I am now sleeping much much better most nights. Oh the other thing I have noticed is I now get a headache everyday, which is also new (but not exciting hahaha). The other thing I am wondering about it the influence my mood may be having on my physical symptoms. I find that because I get bored easily and because I have a creative mind, I am starting to make myself work on some new projects. Writing and recording new music, experimenting with some photowork inside my flat and also working on a small video project. Anyway, these things have me excited and I wonder if those happy hormones are making a difference to the physical nasties?? Hmmmm, maybe the excitement is what makes the morning/early afternoon so good, but then I crash in the later afternoon, which sucks because there is nothing worse than not feeling well enough to watch The Bold and the Beautiful (on at 4.30pm daily). Say what you will about trashy daytime TV but tuning in to see if Donna gets locked in the steamroom by Pam and is left to die is what keeps me going!! I don’t think there is much more I can say after that ... LOL

Oh, P.S. yes that is a VERY scary pic of me .... but don't my new teeth look FAAABULOUS!