-FMS Self-Help - Advice to a New Patient

[Guest guest]

1) Accept Your Illness

Whether you have CFIDS or fibromyalgia, your illness is real, physical,

and

long-term. Getting it was not your fault.

I think this is just such an important thing to note. When I was first

diagnosed, I was so frustrated with myself for my ever-increasing lack of

stamina and ability to keep up the pace I had always kept in the past, I was

almost relieved to have a name for it. Despite the diagnosis, I was amazed at

the number of people who were not only unsympathetic but did their best to

convince me that this was all a " psychological phenomenon " and that physically

there was nothing wrong with me. I learned the hard way, that you are the only

one that knows what you are feeling and you can't let anyone else's lack of

information or lack of empathy make you feel like you shouldn't take care of

yourself in the way that you need to do so.

---------------------------------

[Guest guest]

I agree, Sherri. This is an important point and you've made a great

observation - you know yourself best. Anyone who wants to butt in, make

hurtful and inappropriate comments, and tell you how to best live your

life can take a hike! And thanks, Elaine, for sending all of the good

posts in.

Re: [ ] -FMS Self-Help - Advice to a New Patient

>

> 1) Accept Your Illness

>

> Whether you have CFIDS or fibromyalgia, your illness is real,

physical,

> and

> long-term. Getting it was not your fault.

>

> I think this is just such an important thing to note. When I was

first diagnosed, I was so frustrated with myself for my ever-increasing

lack of stamina and ability to keep up the pace I had always kept in the

past, I was almost relieved to have a name for it. Despite the

diagnosis, I was amazed at the number of people who were not only

unsympathetic but did their best to convince me that this was all a

" psychological phenomenon " and that physically there was nothing wrong

with me. I learned the hard way, that you are the only one that knows

what you are feeling and you can't let anyone else's lack of information

or lack of empathy make you feel like you shouldn't take care of

yourself in the way that you need to do so.

[Guest guest]

Hi a,there is good advice there but I think for me it is a lost cause. I am

now 70 and still feel guilty on those days when I get up at 8am and by 10am I am

back in bed absolutely exhausted without having done a thing. I am not sleepy

tired,my body is tired. Yesterday was our General Meeting,where we discussed the

Canadian Arthritis Bill of Rights. The launch takes place in Ottawa on Jan. 29.

We are starting now by putting pressure on politicians,articles and letters to

newspapers and letter writing campaigns. We will be working on developing

specific issues with consumers,health professionals,businesses and

governments,with a goal to better care,improved access to care and agenda

setting by consumers.Some of the issues are,I am sure the same as yours,

Shortage of trained professionals to care for patients

We need money to educate and train more arthritis professionals

The bottom line is Canadians with arthritis are not getting the care they need

and deserve

I hopefully can join the march in Ottaw and will keep you all informed.

Hugs

June