An intro from Australia

[Guest guest]

Hello everyone,

I was writing an introduction, but then I hit the wrong button and I lost

about 10 minutes worth of typing ... I simply can't start it all again, but

for now I'll just say that, my name is Kit, I'm 31 and I live in Tasmania,

Australia with my partner, Jon. (Much later, I was able to add the

following):

I have had CFS/FM for four years and have been in continual high level pain

since December 1996 when I had a bad relapse as a result of getting amoebic

colitis in rural southern India.

My continual pain is joints and muscles, especially back and neck and hips

and shoulders ... chest muscles (ie. when breathing). I also have frequent

headaches, migraines, finger joint pain, eye pain (photophobia) and jaw

pain etc etc etc ... too much to list.

I'm still struggling with grief and denial and finding it very difficult to

cope. I tried going back to work in July 97 but couldn't keep going and

had to quit last December .... looking back I don't know how I ever kept

going for that long.

I'm on Zoloft too ... 150 mg daily and it helps with the depression a bit,

but not the pain. I tried Amitriptyline, but reacted badly to it. Now I'm

on Doxepin for sleep (only very low dose - 50 mg) which helps a bit, and I

add Murelax (Oxazepam) when it's really bad. I have nightmares and

drenching night sweats every night. Melatonin didn't work because

apparently my system just doesn't know how to use it ... so it doesn't work

just to add more in tablet form.

I'm on Epilim (Sodium Valproate - anticonvulsant) to help " turn down the

volume " on my hyper everything nervous system. But my doctors have taken

me off pain meds because they feel that my pain is the result of a neural

reset to a hypervigilant state and pain meds will prevent spontaneous

recovery (feels more like spontaneous combustion to me). (Was using

Codeine but had started getting rebound headaches from it).

I can take Endone (Oxycodone) when the pain is at its " jump off the balcony

NOW " worst so that helps a little.

I've been given a prognosis of 2 - 5 years ... but I think they're only

guessing. I've been going to the Pain Clinic psychologist here, but she

hasn't been able to help that much as I was already practiced in the use of

meditation and relaxation techniques.

This is supposed to be looking for a long term solution - and I've been

told that blocking the pain with medication only helps short term, but

doesn't teach the body to re-establish normal functioning. I don't know

what I think of this really ... on my bad days it feels like a rotten idea.

When I sit, I'm in pain

When I stand, I'm in pain

When I walk, I'm in pain

(Can't run)

When I lie down, I'm in pain

When I move, I'm in pain

When I breath, I'm in pain

When I live, I'm in pain

I know some other friends with CFS/FM who's doctors have put them on MS

Contin (sustained release 12 hour morphine) or Methadone, but my doctors

seem to be opio-phobic so _I_ have to suffer ... they (my doctors) don't

live with this day after day after day ... how can they ever understand

what I'm going through and what cruel torture my life has become.

Sorry for raving ... and it all sounds a bit melodramatic now that I read

over it, but I won't change it, because, at least it's honest, and I may as

well start out as I mean to continue.

Thanks for listening,

Kit.

[Guest guest]

Dear Kit,

I am crying right along with and for you. I can only relate from my own

perspective, but I know that for me, there have been times that I just did not

feel like I could take the pain and other 'strange' symptoms for another day. I

have been fortunate in that I do have a physician who have been very

understanding and is not afraid to supply me with pain meds. Sometimes I feel

guily that I take somuch of the darned stuff, but at least it helps to keep me

somewhat functional. I am hopeful with the new research that is taking place

looking for other alternatives to help with pain and also that they are trying

to

learn more about the physiology of pain.

My heart goes out to you. Please try to hang in there. It might not be feasible

but is there a possibility of looking for another doc who might know more about

this illness? I know how hard it can be to find someone.

My salvation on many occasions has been my computer buddies as there just is no

one else who understands and I don't want to burden members of my group who are

feeling poorly. Sometime it does help me to reach out to them and check on how

they are doing. I can take this in only small doses however. Even though they

are

appreciative and it does help to get me out of myself, it is also very draining.

What a bunch we are!

Othertimes, I just sit down, have a little chat with God and have a good cry.

Crying often leaves me with a very peaceful feeling although it also leaves me

more tired. I am not particularly a religious person and oddly have become less

so the sicker I have become. I have met others who expressed thes same

phenomenon. I read books that people have written that talk about how their

illness has drawn them closer to God, but for me, something makes me feel very

distant in all aspects of life. Maybe it is how the illness has affected the

brain, but I am less able to meditate, read, and many other things. It is as

though I have fallen into this dark pit that I cannot crawl out of. My, I really

did not mean to get off into such a morbid talk. On the brighter side, I am

still

here, kicking and fighting for justice to prevail. There is little I can do but

I

do so appreciate all the hard work that is being done by so many wonderful

people

out there. Hang in there. There are so many with this illness, there is no way

the world can continue to ignore us much longer.

Hugs,

Vickie

Kit Murdoch wrote:

>

>

> Hello everyone,

>

> I was writing an introduction, but then I hit the wrong button and I lost

> about 10 minutes worth of typing ... I simply can't start it all again, but

> for now I'll just say that, my name is Kit, I'm 31 and I live in Tasmania,

> Australia with my partner, Jon. (Much later, I was able to add the

> following):

>

> I have had CFS/FM for four years and have been in continual high level pain

> since December 1996 when I had a bad relapse as a result of getting amoebic

> colitis in rural southern India.

>

> My continual pain is joints and muscles, especially back and neck and hips

> and shoulders ... chest muscles (ie. when breathing). I also have frequent

> headaches, migraines, finger joint pain, eye pain (photophobia) and jaw

> pain etc etc etc ... too much to list.

>

> I'm still struggling with grief and denial and finding it very difficult to

> cope. I tried going back to work in July 97 but couldn't keep going and

> had to quit last December .... looking back I don't know how I ever kept

> going for that long. >snip<

>

> When I sit, I'm in pain

> When I stand, I'm in pain

> When I walk, I'm in pain

> (Can't run)

> When I lie down, I'm in pain

> When I move, I'm in pain

> When I breath, I'm in pain

> When I live, I'm in pain

>

>

> I know some other friends with CFS/FM who's doctors have put them on MS

> Contin (sustained release 12 hour morphine) or Methadone, but my doctors

> seem to be opio-phobic so _I_ have to suffer ... they (my doctors) don't

> live with this day after day after day ... how can they ever understand

> what I'm going through and what cruel torture my life has become.

>

> Sorry for raving ... and it all sounds a bit melodramatic now that I read

> over it, but I won't change it, because, at least it's honest, and I may as

> well start out as I mean to continue.

>

> Thanks for listening,

> Kit.

> -----------------------------------------------------------------------------

> Help ONElist keep this service free, while generating interest in your

> product or service. ONElist has a variety of advertising packages.

> Visit http://www.onelist.com/advert.html for more information.

> -----------------------------------------------------------------------------