Re: Invisible Disabilities Advocate...Chronic Illness

From: jackie burgess (jackie@k9paws.fsnet.co.uk)
Mon Dec 11 12:39:23 2000


Dear Kate I understand your situation I have had 17 ops since1995 I want to be able to do things simplest of tasks like feeding family putting washing in the machine but cant I am now on Morphine and yes It is getting me down. All I want is NOT to be able to run a marathon but to have some qualtiy of life is that so much to ask the medical proffesssion I believe that society thinks if an illness is not seen then its not understood

take care, try to be strong

Jackie B. SURREY. ENGLAND

> ----- Original Message -----
From: Kate Murphy To: Multiple recipients of list ADHESIONS Sent: Sunday, December 10, 2000 10:58 PM Subject: Re: Invisible Disabilities Advocate...Chronic Illness

On 9 Dec 2000, at 10:30, Helen Dynda wrote:

[ "Most people cannot comprehend what it is like to be sick day after day; because they are accustomed to going to the doctor, taking some medication and soon feeling better.  "Often the most difficult part of having a chronic, debilitating illness, is the lack of support we encounter. People seem to be programmed to think that they have to see someone is bleeding before they can believe they are hurting. Unfortunately, they often ignore what we are saying, because they think we "look" fine."

Actually, I think it is more myself who cannot understand the real impact of my chronic illnesses. I have spent the fall waiting for the incision from my bowel obstruction surgery to heal. After three months the very last of the raw edges closed leaving a wide purple scar. It is healed at last . . .

But I am still exhausted after the slightest effort. I cannot walk more than a few steps on my own. A trip to the city to see a doctor leaves me too tired to eat dinner. I cough in the cold weather and ache all over -- and if I eat the wrong food, I hurt a lot.

Piled up on my desk and around my recliner are so many projects I want to finish and the strength is just not there to do it.

I don't look sick. But with each new acute episode of illness, I am left with a larger residue of fatigue, lack of strength, and reduced energy. What I could do last fall, I can't do this fall. What I could do five years ago, I cannot even imagine doing today.

Still, I cannot really understand that I am not the energetic, self- starter I was even eight years ago when my second and third cancers appeared.

I seem nibbled away!

This morning, a friend brought me Communion. I want to get up on Sunday mornings and go to church. It seems a simple enough task. I got to the doctor's office this week after all. But the thought simply cannot turn into reality for me.

I think my friend from church, my husband, my sisters actually understand this disability better than I do. I still expect to wake up, leap out of bed, and tear into all that I want to do . . .

Love to all,

Kate

Kate Murphy katemm@mindspring.com


Enter keywords:
Returns per screen: Require all keywords: