Re: Repost - A Letter to People Without Hepatitis

[Guest guest]

Suzie and SpYkE...

Thanks, I read this a number of times in the last three years and

it never changes.. The words are exactly in the same place they

were the last time I read it. It doesn't change.

However, each time I read it, I feel something different...from

it's content, as if it had changed. But I know in reality it hasn't

changed one bit! I believe I am the change, and the letter is a

constant, therefore I see the what is in reality unchanging

content quite " changed " ,indeed.. each time I read it. I find that

quite often,the more I know, the less I realize. To me..it is a

phenomenon. Maybe the rest of the people on this earth have known

this a long time, or not. It's certainly not a contest, or race to

be won...

I am going to try and stay focused on the change and

understanding, even though something is exactly the way it has

been, for... well...maybe since the beginning of life itself. There

seems to be a lot of possibilties for understanding unanswered

questions better than I have been able to grasp answers to.....

thinking in that vein.

Yes, I am taking my Lactulose and drinking plenty of water! LOL....

Del

--- suzie wrote:

> Fem,

> I didn't write this but I think it says what we all feel,

> maybe it'll help you, your husband & family (when he decides he

> wants to tell them) understand.

> SuZie

>

> A Letter To People Without Hepatitis!

>

> Having Hepatitis means many things change, and a lot of them

> are invisible. Unlike having cancer or being hurt in an accident,

> most people do not understand even a little about HCV and its

> effects, and of those that think they know, many are actually

> misinformed. In the spirit of informing those who wish to

> understand ... These are the things that I would like you to

> understand about me before you judge me...

> Please understand that being sick doesn't mean I'm not still a

> human being. I have to spend most of my day in considerable pain

> and exhaustion, and if you visit I probably don't seem like much

> fun to be with, but I'm still me stuck inside this body. I still

> worry about life and work and my family and friends, and most of

> the time I'd still like to hear you talk about yours too.

> Please understand the difference between " happy " and " healthy " .

> When you've got the flu you probably feel miserable with it, but

> I've been sick for years. I can't be miserable all the time; in

> fact I work hard at not being miserable. So if you're talking to

> me and I sound happy, it means I'm happy. That’s all. It doesn't

> mean that I'm not in a lot of pain, or extremely tired, or that

> I'm getting better, or any of those things. Please, don't say,

> " Oh, you're sounding better!”. I am not sounding better, I am

> sounding happy. If you want to comment on that, you're welcome.

> Please understand that being able to stand up for ten minutes,

> doesn't necessarily mean that I can stand up for twenty minutes,

> or an hour. And, just because I managed to stand up for thirty

> minutes yesterday doesn't mean that I can do the same today. With

> a lot of diseases you're either paralyzed, or you can move. With

> this one it gets more confusing.

> Please repeat the above paragraph substituting, " sitting " ,

> " walking " , " thinking " , " being sociable " and so on ... it applies

> to everything. That's what Hepatitis does to you.

> Please understand that HCV or HBV is variable. It's quite

> possible (for me, it's common) that one day I am able to walk to

> the park and back, while the next day I'll have trouble getting

> to the kitchen. Please don't attack me when I'm ill by saying,

> " But you did it before!” if you want me to do something then ask

> if I can. In a similar vein, I may need to cancel an invitation

> at the last minute, if this happens please do not take it

> personally.

> Please understand that " getting out and doing things " does not

> make me feel better. Telling me that I need a treadmill, or that

> I just need to loose (or gain)weight, get this exercise machine,

> join this gym, try these classes... may frustrate me to tears,

> and is not correct... if I was capable of doing these things,

> don't you know that I would? I am working with my doctor and

> physical therapist and am already doing the exercise and diet

> that I am supposed to do. Another statement that hurts is, " You

> just need to push yourself more, exercise harder " . Obviously HCV

> deals directly with muscles, and because our muscles don't repair

> themselves the way your muscles do, this does far more damage

> than good and could result in

> recovery time in days or weeks or months from a single

> activity.

> Also, Hepatitis may cause secondary depression (wouldn't you

> get depressed if you were hurting and exhausted for years on

> end!?) but it is not created by depression. Please understand

> that if I say I have to sit down/lie down/take these pills now,

> that I do have to do it right now - it can't be put off or

> forgotten just because I'm out for the day (or whatever).

> Hepatitis does not forgive.

> If you want to suggest a cure to me, don't. It's not because I

> don't appreciate the thought, and it's not because I don't want

> to get well. It's because I have had almost every single one of

> my friends suggest one at one point or another. At first I tried

> them all, but then I realized that I was using up so much energy

> trying things that I was making myself sicker, not better. If

> there were something that cured, or even helped, all people with

> hepatitis then we'd know about it. This is not a drug-company

> conspiracy; there is worldwide networking (both on and off the

> Internet) between people with Hepatitis if something worked we

> would KNOW. If after reading that, you still want to suggest a

> cure, then do it, but don't expect me to rush out and try it.

> I'll take what you said and discuss it with my doctor.

> In many ways I depend on you - people who are not sick - I need

> you to visit me when I am too sick to go out... Sometimes I need

> your help me with the shopping, cooking or cleaning. I may need

> you to take me to the doctor, or to the physical therapist. I

> need you on a different level too ... you're my link to the

> outside world... if you don't come to visit me at home and/or

> whenever I'm hospitalized, then I might not get to see you...and

> as much as it's possible,

>

> I need you to understand me...

>

> By Bek Oberin

>

>

>

> Next time I'm coming back as a cat

>

>

>

>

>

>

>

>

>

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