Setting chronic illness goals

October 24, 2011

What’s your CI goal?

We all have different goals, of course.  There are the big picture goals, the ones that shape our lives.  For me, that’s spending time with family and friends, dating, keeping a full time job, and taking care of myself while living alone.  Some of these are easier than others at different times.  Sometimes these feel impossible.  But so far, they’re all doable.  Ok, maybe I can’t do them all simultaneously, but I’m working on it.

And then there are the illness-related goals that focus on the symptoms.  For me, that’s reducing the pain, finding ways to better relieve the pain when it hits, reducing fatigue, and removing weakness.  I suppose I’ve had these goals for so long that I’ve just taken them for granted.

Over the weekend I was talking with a friend who suffers from severe chronic pain.  She’s been using a form of exercise to try to ease the pain.  She told me that it started to work better when she stopped using it to get rid of the pain and instead thought of it as a way to reduce the pain.  I was shocked!  It never occurred to me that she was trying to get rid of the pain completely.  I guess it wouldn’t have mattered – I couldn’t have talked her into anything different because she wasn’t ready for it yet.  Still, I forgot what it was like to have hope that despite everything, it might one day go away.  I stopped thinking that way many years ago.

I’m happy for my friend that she has this new outlook.  Now, any reduction in pain is a success.  Maybe it will go away completely one day, maybe it won’t, but for now, she won’t feel like she’s failing at “curing” her symptoms.

I learned a long time ago that my pain would never go away.  It took a long time to accept that reality.  And then it went stopped!  I still have pain, but it used to be 24/7, and now it’s only on and off throughout any given day.  Some days I can almost ignore it completely.  This huge, amazing, unbelievable!  So I’m keeping an open mind and I know that anything is possible.  Still, my goal isn’t to get rid of any of my symptoms (except the weakness, which is almost definitely temporary.)  If I just focus on reducing them, then maybe they’ll go away and maybe not, but at least I could get to a point where they were liveable.  If I can live with them and still meet my big picture goals, then that’s good enough for me.  Hell, forget “good enough,” I’d be dancing in the streets with joy.

What about you?  What are your goals?  I’d love to know.  Make a comment below or send me an email.

Leave a Comment » | Decisions, Expectations, Limitations, Medication, Pain, Rants, Raves, Unpredictable | Permalink
Posted by chronicrants

Sharing… or not

October 23, 2011

I have to admit, I was feeling totally uninspired yesterday.  Sure, I could have written something.  I had plenty of topics.  I just didn’t feel like writing about any of them.  Then last night, I found myself getting plenty of inspiration.

I want to a small party where I knew some of the guests and didn’t know others.  Of course, a common question is, “What do you do?”  I had no problem answering that when I was simply unemployed.  For some reason, though, answering it now feels awkward.  I have a job, but I’m not working at it.  I was saying something about Friday and not being at work, and someone questioned me about it.  How do I answer?  My friends know what’s going on, but I don’t feel like discussing it with acquaintances or strangers.  Besides, the followup question would be to ask what health problems I have, and this is a party.  I really don’t want to talk about it at a party.  So I was vague.  Still, it felt awkward.

More awkward than that was the person who asked what allergies I have that cause me to ask about every ingredient in every dish.  I finally told her I have IBS.  It turns out, she has IBD.  Ok, similar but different.  She then proceed to tell me all about a book she had just read, and the diet it described.  Oh boy.  At least she has a similar condition, so that’s better than when people with no idea what they’re talking about decide to give advice.  But again, this is a party.  I don’t want to talk about symptoms and treatments.  I know she meant well, but it was too much.  I kept trying to change the subject, and she kept bringing it back around.  I think it’s worse when the person is well-meaning, because I don’t want to be rude.  Still, this is my life and my body and I really don’t need every Tom, Dick, and Jane advising me on it.

It was an interesting evening.  I had fun for the most part, but it was a good learning experience, especially for my new work situation.  In terms of the bigger picture, though, it was a huge success.  I spent over an hour baking, then rested, and was able to go to the party and feel good.  I was in pain from standing so much while we all talked, but I was able to do it.  I got down on the floor a bunch of times to play with the new puppy.  I didn’t have to leave too early.  Yes, this was definitely a successful evening!

Leave a Comment » | Educating, Frustration, Insensitive, Intrusions, Isolation, Job, Kindness, Rants, Raves, Symptoms | Permalink
Posted by chronicrants

An overly-cluttered slate

October 21, 2011

Posting to this site every day has been easier than I expected.  Of course, I have a wealth of material.  It’s not as if I was writing about some obscure topic; this is my life, so examples and topics are pretty easy to come by.

There are days when I’m stuck, of course.  That doesn’t happen much, but from time to time I just can’t think of anything that I want to write about.  More often, I have days like today when I can’t narrow it down.  Today I could write about odd genetic traits (having too much earwax runs in the family) or about big decisions (should I finally move to a more temperate climate?) or about friends who don’t get it (I was asked yesterday if I’m enjoying my “break,” as if a medical leave of absence was just a long vacation.)  Yes, there are many topics I could write about today.  I’m sure I will explore all of those at some point (I’m sure you’re at the edge of your seat, waiting to hear about the earwax) but today won’t be one of those times.  Today is an off day.  Today my brain isn’t interested in writing or exploring.  Today I’m going to let my thoughts glide over all of these topics without thinking too deeply about any of them.

We have to be sick every day.  We have to think about it every day.  We have to handle the symptoms and manage our lives around them every day.  So today I’m taking a day off from deeper thought.  I’m sure it’ll come back to me tomorrow.  For today, though, it’s nice to take a small “vacation.”

 

[Note: Sign up for free emails of posts by clicking the button in the top right corner of any page.]

Leave a Comment » | Decisions, Expectations, Limitations, Rants, Raves | Permalink
Posted by chronicrants

Understanding drugs

October 20, 2011

A friend was trying to comfort me.  She suggested that maybe there would be a new drug treatment soon.  I said there wouldn’t be because, well, there won’t be.

The process is slow.  If a scientist comes across some great discovery today, it will be many years before it is a drug that I could take.  And of course, even then, my doctor may not want to prescribe it or my insurance may not cover it.  But first there needs to be a drug that could help, and there just aren’t very many of those.

It was reassuring to see this article in the newspaper the other day.  Sometimes, like with penicillin, there are fortuitous accidents.  I don’t know about you, but I really don’t want to wait around and hope that someone gets lucky.  A lot of medications are used off-label, meaning they were developed to treat one thing, and ended up working well for something else (think: Viagra.)  And then there are the meds that are being used as they were designed.  I suppose I could do some research to figure out how many of these exist now, but I’m too tired or too lazy or maybe both.  The point is, there are a lot of medications that are not being used as they were designed.  That’s ok, but wouldn’t it be nice if it didn’t have to happen that way, because drug interactions were so well understood that scientists could design medications to treat any condition they chose?

That’s the dream.  Reading this article, it’s good to see that some people are pursuing this approach, and I sincerely hope they can make it work, and soon.  Now I know that doesn’t mean I’d get a drug that would help my conditions specifically.  I’m sure these methods would be used to treat more common illnesses first.  Still, after they treat cancer and AIDS and so many others, maybe, one day, they’ll get around to mine.

There are limited resources, and time continues to alternately crawl and fly by, but it’s encouraging to see progress like this.  Throwing money at research isn’t enough.  Politicians and argue forever about how to allocate funds.  At the end of the day, though, it’s about being smart.  Think about how much farther the dollars would go with greater understanding of the human body.  Think about what could be achieved!

 

[Note: Sign up for free emails of posts by clicking the button in the top right corner of any page.]

Leave a Comment » | Educating, Expectations, Frustration, Isolation, Kindness, Medication, Pain, Politics, Rants, Raves, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »