Terminal vs. Long Term Illness with no hope of improvement.....

Hi everyone,

This is an issue that I've been questioning for some time, but may have been cleared up through my own research, but wanted to get our opinions. Terminal involves staging, with a shorter life expecancy, and death.

Long term chronic illnesses can be deveasting, with pain and depression that lasts indefinitely--what's required is specific organ systems need to fail, and medical treatment no longer will work.

Currently I am at odds with this....Terminal has a short term bout (and short, I'll give it from less than 1 month to 5 years--my personal projection) for loss of life.

However, what about those that are sick that suffer day in and day out that have no positive ending. A 30 year old may live to 60 years, but with each day horrible pain and no improvement. Long term illness and some other definitions may apply. Outside of a timeframe assigned to a disease, could we say that a person with no hope of long term treatment will cure or really affect their lives except to maintain it at a reasonable level of comfort?

It seems to me that acute diseases gather the lion's share of attention and treatment. What about those that have chronic conditions where their vital organs, heart, liver, kidneys will fail often, but not enough to make them take the long dirt nap.....how are those people treated?

Last week I had a discussion about pain meds with my family doc--he's rather open minded. He openly suggested methadone, which I gave him a 10 minute lecture why he should never bring this up again, and the ramifications of such prescriptions. Much involves social hiearchy, status, and even doctor's opinion when it comes to pain patients, or even patients that are non methadone vs. methadone patients.

The "classing" of long term illness can be tricky. I don't want to be classed as disabled, yet I meet them in many ways. However, I choose not to, and as long as possible I will fight it. However when you have a frank discussion with your doc and outcomes, sometimes the less than positive comes out.

The strongest issue if you are a patient that wants to fully function in society, is the prevention of diagnostic codes and opinions placed in your file leading you towards disability.

I do not hold disability against anyone.... At some point it becomes the right decision. From my own personal feelings, I'm not ready for that. I have a fight in me that doesn't want to go out. But the pragmatic side of me does look at this in a certain light. Each day you can fluctate from wanting to attack the world--and the next with an onslaught of pain, you may retreat and say "i'm not going to be better, and nothing long term is positive." This truly can be tough.

I'll be honest, I'm fighting some heavy stuff right now. The next leg of the healthcare journey may be tough, but I'll see as I approach. I know each of us goes through this...so if you want to share, go ahead. For those that have been fighting stuff long term, it does start to stack up. I started now as I think back to really start to get sick around age 20. 15 years later, and I've seen and gone through a lot. And for the old phrase about the straw breaking the camel's back--I think we are all camels, and that singular straw may just once land on our backs.

Thoughts, commments, welcome.

This is frustrating, no doubt.
-PF

Oh my dear PF, That is a hard thing to reply to. I am sorry you are dealing with things that are so heavy at your age. I do understand your shying away from the disability and Methadone. I have been through too, too many years of chronic illnesses myself. I have managed to avoid both of those labels myself, but just by the skin of my teeth.

If it werent for my hardworking husband, I would not be able to say that. There have been times he has begged for more help from me, but I have not been able to do it. I want to say that I do not feel that anyone should be ashamed to do either one of these things. I am sure my family would be better of if I let it go and applied for disability. And I already take narcotics daily for pain from chronic Lyme, so whats the difference?

Its the acceptance of the fact that we are probably not getting better. So, I keep saying "Its there when I need it but the time is not now". At 35, I truly did not believe I would make it to 50. Now I am 52 and just went through an elective surgery without too many extra issues! I know my medical problems are not drastic as yours. But, they are scary and possibly lethal. I am living it one day at a time, sometimes an hour at a time...
Hugs,
Cindy

PF..my heart sank when I read this..this makes my heart when people deal with chronic health and pain issues..your poor body has already endured so much and you are so young. Giving you a hug..warm thoughts and prayers our dear friend.

Love you Cindy

I've thought about these same issues a lot lately myself. I've always been sick..just as I've gotten older the list has grown dramatically and more serious as well.

Sorry, wanted to write more, but head is throbbing so I need to get off of here.

Greeneyes

The "classing" of long term illness can be tricky. I don't want to be classed as disabled, yet I meet them in many ways. However, I choose not to, and as long as possible I will fight it. However when you have a frank discussion with your doc and outcomes, sometimes the less than positive comes out.

The strongest issue if you are a patient that wants to fully function in society, is the prevention of diagnostic codes and opinions placed in your file leading you towards disability.

hey Marc.



First, I am so sorry you are going thru all this. Heavy, heavy stuff.
To tell you the truth I am so overwhelmed I don't know what to say, where to start, honestly.
Because what can I say, love - "don't worry, it's not gonna be so bad" or "perhaps things will improve" when clearly,
they aren't improving so far, and the future is never to be predicted.

But Marc, may I point out one thing. Since I am considered "disabled" all my life, and migraine at one point added to the disability excuse me if I feel I may preach on the subject.

You are looking at disability the wrong way.
It is natural however for an otherwise 'healthy' person to be shocked at first at the prospect to be
considered "disabled",
and hence, vehemently refuse to accept the state as positive or a fact, really.

Marc, is Stephen Hawking disabled? He is, isn't he? does that make him any less ABLED?
Was Hellen Keller disabled?

please look at these less known people Marc, and reflect how the idea of what disability is is purely in the mind:
https://www.youtube.com/watch?v=eBLuRDqu584
https://www.youtube.com/watch?feature=endscreen&v=WwUeVYD6dxY&NR=1

So, my point Marc is- if these people at one point decided they are not ready to "accept their disability",
they would in fact not accept rather the obviousness of the fact than the wholeness of it.
It's like a man without legs refusing to use a wheelchair because he is not ready to accept the fact he has no legs no more.

Really, what "disability" mean?
It's simply a state our bodies are in at any given time, but what we decide to do with it- it is entirely
different matter Marc.
Please do not look at it as a sign of giving up, or a time to sit down and do nothing because it's anything but.
In fact, quite often accepting disability status is the beginning to healing and opening new perspectives.
New life, even. It may not be the same as before but who says this new life will be any worse, lesser than the one before?

may I recommend new Lisa Genova book "Left Neglected" as it touch a lot on the subject of disability, Marc.
I am sure it will help you to deal with this subject somehow.

http://www.amazon.ca/Left-Neglected-Lisa-Genova/dp/1439164630

I am disabled, I need hearing aids, closed captions, typed telephone, texting, light alarms etc which is considered assistive devices
and migraine is further disabling for which I need many medications - abortive and preventive,
but THIS is precisely what ENABLES me.
Think about it Marc.

Disability is not necessary a negative thing. Once you have the status, you might be provided with assistance which can make your life easier and thanks to that, you can be actually more productive, not less.

So, please don't think if you'd accept the status, you'd be any less a man. Of course you won't be any less!


Risa