Re: The *Hummingbirds' Foundation: XMRV, 'CFS' and M.E. by ...

[Guest guest]

I tell them M.E. and name it, Myalgic Encephalitis, they have no clue but

you say CFS, ahhh your tired all the time...ME sounds serious.

Cee

In a message dated 3/14/2010 7:01:54 P.M. Pacific Daylight Time,

sagefox@... writes:

I def fall under " ME, " but no one in the US uses this term, so I am stuck

with CFS. When I use ME, no one has a clue. With CFS, they have a clue, but

they are usually wrong. I can't win. No, CFS is not ME, but at the same

time, those of us who are not going to be diagnosed with ME because the term

isn't used- it doesn't mean we don't have ME. It just means that being

categorized as CFS trivializes a serious neuro disease and does lump us in with

the people I've met who definitely do not have ME, but CFS, but think we

have the same thing.

[Guest guest]

Right, except people then act like I'm making a " big deal " out of nothing,

giving it a " fancy name " when they can see " perfectly well " that here I am, out

and about (this one day of this one month). So I've given up on M.E.

[Guest guest]

what was this in reply to? doesn't have the bit before it and I dont keep all

the emails so it doesn't make sense? But I am guessing has something to do with

the differences between CFS and ME and people not understanding the condition!

If they dont get it dont worry about it dont listen to them and only give them

info YOU want to pass on stuff that they HAVE to know I have adopted this

principle with a number of people and its hard because I want to tell them whats

been going on lately with the possible mitochondrial disease but I dont because

I dont have enough info and if I tell them it might be that I will get 50 qs

most of which I wont be able to answer and then I will get 2 or 3 calls a week

asking me the same qs over and over and I dont like it it stresses me out so I

am planning on telling them when I have as Much info as possible and then only

tell them what they need to know. I feel a bit bad about it but at the same time

its been a lot less stress from not telling them!!! Plus this is my aunt I am

talking about she was worried about RA and scorjens (dont ask me how to spell)

but now the drs think possibly only osteo arthritis just a bad case plus

bursitis in her hip and she is the most independent I will not ask for help

unless I am dying type person and she doesn't have to be like that she could

learn all the strategies I have from a different thing but still chronic pain!

and it would help her but she doesn't want to ! I have recommended the arthritis

foundation to her (In south australia where I live this is) cause thats where I

met people who helped me with self management and pacing and planning activities

etc but I cant do it for her she does not sit still for 5 mins a day has chronic

insommnia and gets up at 5am and wonders why shes tired shes looking after (so

to speak) 3 to 4 kids (one left home another one might be leaving next week and

he has a baby) but the youngest (not the grandchild) is about 16ish so they are

not that young but she is still runnign after them all etc and cleans her house

franticlly every day!

I may not always pace the best but I dont want to become bedbound from not

trying and I reckon that my aunt will end up really sick if she doesn't do

something. Finally they gave her some different medication for her arthritis so

hopefully that will help and shes having some kind of cortison injection in her

wrist on monday!

----- Original Message -----

From: sagefox

Right, except people then act like I'm making a " big deal " out of nothing,

giving it a " fancy name " when they can see " perfectly well " that here I am, out

and about (this one day of this one month). So I've given up on M.E.

[Guest guest]

I will keep you guys in my prayers!

Debbie G

________________________________

what was this in reply to? doesn't have the bit before it and I dont keep all

the emails so it doesn't make sense? But I am guessing has something to do with

the differences between CFS and ME and people not understanding the condition!

If they dont get it dont worry about it dont listen to them and only give them

info YOU want to pass on stuff that they HAVE to know I have adopted this

principle with a number of people and its hard because I want to tell them whats

been going on lately with the possible mitochondrial disease but I dont because

I dont have enough info and if I tell them it might be that I will get 50 qs

most of which I wont be able to answer and then I will get 2 or 3 calls a week

asking me the same qs over and over and I dont like it it stresses me out so I

am planning on telling them when I have as Much info as possible and then only

tell them what they need to know.

[Guest guest]

Erih,

Hi. You can probably find that message by going to the group website and

scrolling through the messages.

Barbara S

>

> Lynn

> I am not in overload far from it just simply trying to find out what the

message previous to that one was cause I didn't know what I was replying to

there was some discussion about always putting that in the message just so that

we know what the rest of the conversation is

>

> ----- Original Message -----

> From: lynn8953

> you sound like you are on overload--I have been there so many times myself I

know--please slow down-focus-relax---Lynn

>

[Guest guest]

Good to hear--I didn't know what was going on-- it just seemed like you were on

overload==glad you are feeling well....lynn

>

> Lynn

> I am not in overload far from it just simply trying to find out what the

message previous to that one was cause I didn't know what I was replying to

there was some discussion about always putting that in the message just so that

we know what the rest of the conversation is

>

> ----- Original Message -----

> From: lynn8953

> you sound like you are on overload--I have been there so many times myself I

know--please slow down-focus-relax---Lynn

>

[Guest guest]

, You are so wise beyond your years. I love that you do research before

agreeing to anything. It is your body and your life. Way to go!

Barbara S

>

> I am having a difficult time but not in overload been there and dont want to

go back! I know all about pacing and resting and how to not end up that way. I

have just been through hell and sometimes I do get really down about stuff but I

guess we all go through hills and dales. I have someone I speak to on a regular

basis she calls herself a lifestyle educator I owe my life to her! Literally!

However she is more than that to me and a volunteer not a paid person she is my

best friend and she has taught me everything I know about self management

strategies and how to be assertive how to be in control of drs and other medical

professional who try to take over your life. I do not take a treatment of any

kind unless I have thoroughly researched it and thought it over and discussed it

with my husband I do not let them dictate what THEY want ME to do. I make the

decisions myself based on information. its not that I dont want to do things its

that I cant without all the infomation most of which they do not or will not

give out without a certain amount of asking. They just assume we will do

whatever they say. When they start talking about neurostimulators major

operations etc and just expect you to say yes and tell you that it will fix ALL

your pain! I need WAY more info before I would agree to anything like that. they

want to help but they do it in the wrong way!

> That is my rant I will stop

>

> ----- Original Message -----

> From: lynn8953

> Good to hear--I didn't know what was going on-- it just seemed like you were

on overload==glad you are feeling well....lynn

>

[Guest guest]

Just to clarify Lynn I am in AUstralia our system is different it sucks but I am

getting help can someone tell me if there is advocacy groups in the US?? I think

these could help a lot of people in a forum I am on but being in a different

country its hard for me to assist.

----- Original Message -----

From: lynn8953

Hope you are feeling better.

You are right on target---you do have to manage your own healthcare--

especially in the USA

now that everything is going to be cut for people on medicare/disability.

The first few years I was ill they did every test known to mankind on

me---then I said STOP---they were getting no real answers and finding other

stuff that was wrong as well!!! (ha)

I now go to 2 Doctors every 3 months. Bloodwork--CT scan once a year and thats

it.

The longer you are sick the more accepting you become that there doesn't have

to be a diagnosis and you start to try treatments you want to to ease the

symptoms.

[Guest guest]

glad someone agrees this is a good way to go. Its only because of what happened

to me 2 years ago and only because I have been forced by my dr to do things take

meds and stuff that I DIDN " T want to do without ALL the information about them

that I now refuse to do anything until I have ALL the infomation how on earth is

one to make decisions without the information FIRST?? I mean I know my body

better than any dr does and I know how sensitive it is to stuff so this only

makes sense. The bad thing is one dr has convinced my husband that a

neurostimulator will fix everything and truely I dont believe it will I think I

will get very sick recovery will take a LOT longer than what anyone expects and

I dont really think I need it at THIS point perhaps if it gets worse or cant

stay on meds or something but from my research it doesn't stop all the pain and

there could be potential side effects that are bad and no matter what he says

about not that many risks simple procedure nothing is simple with me.

I had a sleep study on sunday and I was allergic to hypoallergenic abrasive

paste basically exfoliating cream I mean come on that wasn't even the study its

still painful and itchy 2 days later most people it doesn't effect them at ALL

but cause of hypo sensitive skin AND heightened senses heighened senses fromt he

fibro its messed me round a bit lucky only on face feels like a graze a mild

graze or mild sunburn type feeling not particularly nice!!!! And that was the

extra sensitive paste and a new micropore tape as well

Anyway thanks for listening

----- Original Message -----

From: b1write

, You are so wise beyond your years. I love that you do research before

agreeing to anything. It is your body and your life. Way to go!

Barbara S

[Guest guest]

that is a very smart way to handle this, We have to be 0ur own ambassadors

for our care. Lots of questions is the answer along with research.

Hugs

DebbieG

" McKenzie-Christense n " <erinmck@... > wrote:

>

> I am having a difficult time but not in overload been there and dont want to

go back! I know all about pacing and resting and how to not end up that way. I

have just been through hell and sometimes I do get really down about stuff but I

guess we all go through hills and dales. I have someone I speak to on a regular

basis she calls herself a lifestyle educator I owe my life to her! Literally!

However she is more than that to me and a volunteer not a paid person she is my

best friend and she has taught me everything I know about self management

strategies and how to be assertive how to be in control of drs and other medical

professional who try to take over your life. I do not take a treatment of any

kind unless I have thoroughly researched it and thought it over and discussed it

with my husband I do not let them dictate what THEY want ME to do. I make the

decisions myself based on information. its not that I dont want to do things its

that I cant

without all the infomation most of which they do not or will not give out

without a certain amount of asking. They just assume we will do whatever they

say. When they start talking about neurostimulators major operations etc and

just expect you to say yes and tell you that it will fix ALL your pain! I need

WAY more info before I would agree to anything like that. they want to help but

they do it in the wrong way!

> That is my rant I will stop

>