Yup, sure enough...

[Guest guest]

....today I notice that my skin is hurting. THAT I didn't expect! How in

tarnation did I manage to sprain my skin?! Aiee. Sooner or later, I've got

to be able to think before I do -- granted it's hard to do when there are

people honking and yelling at you, as if you broke down to intentionally make

their day more difficult....

I'm not sure, either, that there isn't some tendency deep in my psyche that

wants me to push myself into the hospital, just to convince everyone who

doesn't believe my doctors. I've come very close these past few weeks! And

how stupid is that? But that disbelief directly affects me in another way,

too -- it's hard to believe it yourself when your family doesn't, and the

nurses dealing with me think I'm making up problems, and people in parking

lots yell at you for using handicapped spaces when you're " obviously not

handicapped " ....I do wake up wondering if I'm just a wimp because I can't

grin and bear it.

Seems to be my biggest problem dealing with EDS. I had shaky self-esteem

before I started hurting. It hasn't improved much. How can it, with people

constantly questioning me despite solid diagnosis by several different

specialists....it's not enough to live my life, I have to justify the way I'm

living it every day -- to myself and everyone who doubts me.

Not news, I know. I hope writing it down will make it seem as ridiculous as

it should seem....

[Guest guest]

In message , MTLamar@... writes

>...today I notice that my skin is hurting. THAT I didn't expect! How in

>tarnation did I manage to sprain my skin?! Aiee. Sooner or later, I've got

>to be able to think before I do -- granted it's hard to do when there are

>people honking and yelling at you, as if you broke down to intentionally make

>their day more difficult....

You will probably develop some impressive bruises soon.

>I'm not sure, either, that there isn't some tendency deep in my psyche that

>wants me to push myself into the hospital, just to convince everyone who

>doesn't believe my doctors. I've come very close these past few weeks! And

>how stupid is that? But that disbelief directly affects me in another way,

>too -- it's hard to believe it yourself when your family doesn't, and the

>nurses dealing with me think I'm making up problems, and people in parking

>lots yell at you for using handicapped spaces when you're " obviously not

>handicapped " ....I do wake up wondering if I'm just a wimp because I can't

>grin and bear it.

I don't agree, Mark. Sometimes we have to do things and then pay the

price. Leaving the car where it was could have ended up in some

inattentive idiot hitting it. (Too many drivers like that on the roads.)

So, you pushed it out of the way. And you still get out of bed the next

morning and face the day. There are some very sad people out there who

cannot do that. It takes mental strength to do that. You have that. Of

course you have bad days. We all do. But getting up and facing the new

day is not the action of the of a wimp. And you are not a wimp. A wimp

couldn't face day in and day out what we live with. YOU ARE NOT A WIMP!

Got that?

>Seems to be my biggest problem dealing with EDS. I had shaky self-esteem

>before I started hurting. It hasn't improved much. How can it, with people

>constantly questioning me despite solid diagnosis by several different

>specialists....it's not enough to live my life, I have to justify the way I'm

>living it every day -- to myself and everyone who doubts me.

Well, EDS does not have very obvious symptoms to the untrained eye. So

it is very common for people to question the diagnosis. Even other

doctors will question the diagnosis. (Most of us have been there at some

point, usually more than once.) We know the symptoms we have very well

and see them, but others do not. Trying to explain to someone that the

problem is a very small thing in the body but is so important that is

messes up the whole body in various ways, is difficult. It is easier for

people to disbelieve, especially as it is a genetic condition. After

all, that implies that the condition is someone's fault (in most

people's eyes). It is much easier to pretend that it doesn't exist and

that it is AIYH. Sad but true.

As for your self esteem, you need to learn to value what you have. You

have and a wonderful loving relationship with him. You can still

get out of bed in the morning, or at least most days. You still have a

good brain. Yes, you have lost some things that are very dear to you,

especially your career. Most of us have been there and done that. (I am

still battling with this myself, so I know how you are feeling.) You are

still very eloquent. You still have many skills. So you may no longer be

able to use them, but maybe you could teach them? You need to learn to

value what you still have and not mourn the things that are no longer

possible. Easier said than done, I know. As I deteriorate and lose

function, I have been on this roller coaster ride numerous times. It

doesn't get any easier, but I know that if I work at it, I will make it.

And if I am _really_ lucky, I may even have a break before getting on

that ride once again. (I'm on that ride again at the moment. Mainly with

the RA, but I'm sure the wrist surgery has its part to play too. <sigh>)

Try to think positive and make sure you laugh at least once a day. Lots

of good humour sites out there. A good sense of irony and the ridiculous

does help.

--

Fuller

Owned and operated by fur kids Grace, Poppy and Flo

Folding for the future with the Arthritis Warriors team.