Goal? Do you mean field goal?

Anyone ever have some non understanding person ask you "What are your long term goals in life? Where do you expect to be in five or ten years?"

Goal? What's a goal? This disease has long ago crushed all my hopes and dreams for my life. My "goals" are to simply get through each day and do what I can that day. And if I can't do whatever it is, I try to get it done on another day.

I've been forced to live each day as it comes. There is no planning for the future because I never know what will happen. I don't know how I will be from day to day. I can't make real plans. I always end up canceling. I can't guarantee anyone that I can be anywhere on any given day. And if I have to be someplace that I cannot get out of, I end up in terrible stress, which can trigger a flareup or setback. Any type of appointment can stress me so badly that I end up ten times worse.

Chronic illness completely changes any goals you ever had, particularly this chronic illness. Other diseases, you might still have some hopes and dreams and goals to reach for, but this one..........there is no treatment. It's not like I can go for infusions or radiation or whatever and even falsely believe I am "fighting" it or I will "beat" it. Usually, even if it's false hope, you can at least feel you are doing something to fight your disease. We have no treatment, so there's no goal there to fight with.

People with CFIDS/ME are left to their own poor devices. We are left out in the cold to attempt to make ourselves better by any means we can, which often leads to real poverty as we lose our money in the attempts. We are forced to try alternative medicines, anything we can come up with. We visit quacks, we try snake oil, we pray to any saint we can come up with. We will often out of sheer desperation try all kinds of crazy things that we would never normally do in an attempt to get well. And mostly, we end up being worse for the wear at the end of it all.

So goals? Really? Just getting out of bed and making something to eat can be a huge, monumental goal with this disease. Taking out my garbage is a giant goal for me. I actually count the steps down the hall while I'm doing it. There are over twenty, but I lose count at about twenty.

I just wish people would get a clue as to what chronic illness really means and stop asking me stupid questions. I don't know where I'll be in five or ten years. How should I know? I don't know where I'll be in ten days from now. I haven't got a clue.

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People don't ask me about my goals, but I feel the same way you described above when people suggest I'll be getting better soon as if I have merely a flu or cold. I think after a long period of chronic illness "Get better soon!" just stops feeling like an appropriate statement. Of course I'm sure the people mean well and are just trying to say something nice but it makes me feel as if they haven't heard a word I said, since nothing about my situation suggests I'll be getting better soon.

Actually when I think about it I have had a few questions like that over the years. It shows people really don't get the reality of our situations. I have another disabling chronic condition in addition to this one and did get some comments like that when I'd been disabled by that condition for years, before my CFS got as bad as it is now. I guess all we can do it try to remind people of the reality of our situation when we get comments like that. I have done it with a few friends. Some get it and do respond differently after, others not so much.
 
My goal for 10 years is the same as it is today, to be happy. Some people miss the the trees because of their endless search for a mirage.
 
Hi, for twenty years every doctor but two said I would be better in six months. One specialist said I can't live on a pension, I have to do something else. If I were answering him today I might say something like "I can't live with this disease either, I only exist. What other treatments can you offer that are proven to work?"

Carrigon, I live without goals, I have guiding principles, directions to head in, but don't think about definitive outcomes. Its about "this direction is better" and not 'this is where I must be". Every major goal I ever had with one exception I have not been able to reach due to ME. I do set soft targets like "today I will make dinner" but I don't fret if I can't or all I eat is a can of baked beans.

I wonder how we can better communicate with well-meaning people? I am not worried about the other kind, I don't expect they can be reached anyway.

Bye, Alex
 
Alex, that's how I do things, too. If I can get something done, it gets done, and if not, it happens another time. I think people who aren't sick forget that we are only made of flesh and blood. We are not God. And we do not control the universe. You can make all the plans you want to, but often times, something happens to upset those plans because that is how life really works. You can't map out your life and really know what will happen.
 

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