Jim's Place

"Mamby Pamby Land?!"

To many men, a guy trying to explain the profound impact of a chronic illness on his life just sounds like he's stuck in "Mamby Pamby Land" - as made popular by Sarge in the GEICO commercial. To them, being a man means you earn your own way, that you don't take the easy way out, that even if you're hurting you push through it, that you don't make excuses, that you honor your commitments no matter what...

Even if they accept that your illness is real, they still tend to believe that to be a man you have to push through the illness and not let it interfere with you living up to your responsibilities. Any "complaining" is often just dismissed as weakness. And if the illness is "invisible", you're just going to have a hard time convincing them that this not primarily a character issue.

It's not that women don't experience similar treatment, but for a man, living with a chronic illness can devastate his self-esteem and his self-respect. Even though most of my male friends and family members are supportive, I just don't feel that they respect me like they did when I was holding down a job and never even drove through "Mamby Pamby Land"...

Bluestem Lake, Pawhuska, OK. July 2011. Taken with my Canon Rebel XS.

"You should sign up for a fitness class!"

With a chronic illness, the usual approaches to motivate you to exercise simply don't cut it...

Signing up for a fitness class, getting a personal trainer, getting a workout partner are great for a person of normal health, because they provide structure and support - but the rigid schedule is not conducive to a body that is erratic and if you find that you're having to constantly cancel it just adds stress and frustration.

Setting goals is important, but usually that means attaching a timeline to them. But with such unpredictable health, committing to achieve a goal by a given date is often impractical and potentially detrimental due to the added stress.

The usual reasons for the exercise - to drop weight, run an event such as a 10k, look better, etc. can certainly be relevant for some people with chronic illness, depending on your particular condition - but those challenges require consistent effort over an extended period of time, which just seems impossible when you don't even know if you'll feel up to getting off the couch tomorrow...

So what does work? For me, every workout is in and of itself a victory against the illness - even if I've had to miss workouts for weeks - THIS workout was still worth it. I get a sense of empowerment from just showing up at the gym. I have my longer term goals, but I accept that the illness could very well derail them. In a nutshell, you have to find some way to feel that your exercise program is worthwhile - even if that means you can only get in a workout now and then.

Over the years, there have been long periods of time where I wasn't able to exercise more than once every few weeks and it seemed like a waste of time and energy. However, those workouts at least kept me from sliding backwards too fast, keeping me somewhat in the game. Otherwise, I would likely be over 400 lbs now and in a wheelchair, if I was even still here...

I know exercise isn't practical for many, but whatever the case, I just want to encourage you to make the most of whatever you have to work with...

Thought I was done with that!

There's nothing like a chronic illness to let you know how well you've addressed any childhood wounds or self-esteem issues…

This could take a while...

It's not that I have an issue with putting things off, but simply that I have an unrealistic approach - waiting until I feel well enough to do a given task!

Yikes! Another holiday alone!

It takes a special kind of person to feel happy for friends and family who are enjoying a holiday with others, while you're spending it alone - because you're too sick to even leave the house or simply that the illness has made it so that you no longer get invited.

"No wonder you don't feel well!"

With an invisible illness, it's inevitable that some people are going to point a finger at any "bad" habits...

"You're a drinker? No wonder you feel so bad and have a hard time getting out of bed!"

"You drink coffee?! No wonder you have sleep issues!"

"You're a smoker?! No wonder you feel sick!"

"I bet if you changed your eating habits, you'd feel a lot better and wouldn't be so fatigued. Until I started eating healthy, I felt awful all the time, too."

It's not that making such lifestyle changes aren't beneficial, but it takes the focus away from dealing with the illness, potentially framing it as more of a behavioral issue than a debilitating medical condition. Until you address those habits, some doctors and some people just aren't going to take you seriously.

Of course, any resistance to making the suggested lifestyle change is often met with "Come on! It couldn't hurt to give it a try!" On the surface, that sounds reasonable, but the last thing a person with a chronic illness needs is yet another invalidating inference - that somehow, someway, they brought this upon themselves...that even if they do have a serious illness, it's their habits/lifestyle that elevated it to a disabling level...

"If he can do that, what's your excuse?!"

Some people need to understand that there's a big difference between a handicap and a disabling chronic illness. As much as I admire those people completing marathons, despite missing one or both legs, if they had a disabling chronic illness, they'd likely struggle just to get in an occasional run around the block...

Cancelling in advance

With a chronic illness, having to cancel a planned activity at the last minute just goes with the territory...but sometimes, I'll cancel several days in advance. That can be quite perplexing to people, but it's not because I don't think there's a chance I'll be up to attending the event, but rather that at the moment I realized that I needed a break from the pressure or stress of such a commitment.

For example, right now I have a bug or virus on top of my usual autoimmune condition, so I canceled my doctor's appointment for Monday. I might very well be up to it by the time Monday rolls around, however, canceling the appointment provided an immediate and much-needed relief from that stress/worry, allowing me to better recover over the weekend.

Freedom is never free...

Happy Monday guys! Hope your week is off to a great start. I'm off to a late start - didn't get to sleep until 6am. I usually feel my best late at night and unless I'm very disciplined the next thing I know is that it's 3am or later. My guess is that's in large part because pollens are at their lowest at that time. But whatever the case, it's important for me to get my daylight back...

I really enjoyed going over to Gillespie Field yesterday and checking out the World War II bomber they had on display - the B-17 used in the movie "Memphis Belle". When I think about the history behind this plane it always gets me a bit choked up...the countless men who flew in planes like this to not only save our freedom, but the freedom of so many other countries. I'm 59, but for so many of them, their life ended before they had even reached 21...

That's one of the reasons I feel giddy most of the time. Every day feels like a bonus and a blessing. Who's to say that any of us are any more deserving of a long life than those young men that climbed into that bomber to do their part to defeat Hitler? It doesn't mean that our sufferings aren't significant, but I hope it helps put things in perspective.

And I hope that you can feel what I feel. Like anyone, I get awfully frustrated at times with the adversities of life and sometimes feel a bit discouraged, but yet part of my drive comes from the fact that somebody else paid the price for the freedom I enjoy. I wish so much that I could sit down with one of those young men that never came home...

Of course, I'd express my heartfelt gratitude for the tremendous sacrifice he made, but I'd also do my best to reassure him that I wasn't going to squander or ever take for granted the precious gift that he and others like him gave to me...that I'd make the most of this life, no matter what - and most importantly that I'd never forget that freedom is never free...