Jim's Place

"JIM'S HOSPITAL HUMOR"

Ok, you knew this was coming...

"JIM'S HOSPITAL HUMOR"

Nurse: "Are you incontinent?"
Patient: "No, I'm generally pretty happy, despite my health issues."

Nurse: "When was your last bowel movement?"
Patient: "Do farts count?"

Nurse: "Can I check your vitals?"
Patient: "Have at it, but without that blue pill ain't much gonna happen..."

Nurse: "Do you have dietary restrictions?"
Patients: "Yeah, until you guys hire a better cook!"

Nurse: "Did you sleep well?"
Patient: " Oh yeah, as soon as I closed my eyes the illness was gone! Geez, why do you think I'm here?!"

True friendship

It's a rare friend that will support you when you have a rare disease...

My own private ICU

I know that even some supportive friends get tired of hearing about my daily challenges with chronic illness and over the years I've had some people imply that I'm just focusing on it too much.

Funny, but those same people would be anxious for daily or even hourly updates if I was in the hospital. What they don't realize is that every day on the couch sick is like being in my own private "Intensive Care Unit" - trying to cope with a medical situation that demands ongoing care and treatment just like a serious injury. And the harsh reality is that this "injury" effectively reoccurs every day and it's unlikely that I'll ever get "released" from this "medical facility"...

What's all this churning about?!

Anyone with an "invisible" chronic illness is painfully familiar with that churning inside that comes from the need for validation and support - for those you care about to accept your illness as being real and every bit as debilitating as you say it is. Over the years, I've come to terms with that and feel that I rarely let people who don't "get it" get to me. However, there has still been a daily churning that had puzzled me. Am I still worrying about what other people think? Am I letting the world get to me, just because I don't look sick? Perhaps, those are still issues, but they aren't really at the heart of this particular internal turmoil...

I've got a good handle on the relationship issues associated with an invisible chronic illness and I think I've learned to cope with it all pretty well. I've accepted that this is just a harsh reality and I try to focus on what I can do instead of what I can't do. Basically, I'm quite a happy camper considering these very trying circumstances! So where's the inner turmoil coming from?! In a nutshell it's quite simple. When I wake up with that profound run-over-by-a-truck sickness, all sorts of alarms and sirens go off! It doesn't matter that this has been a daily routine for many years, my brain is still screaming "Danger! Danger! Something is terribly wrong, Jim!" Of course, I know that! But it's like hitting your thumb with a hammer. It doesn't matter how many times you've bashed your thumb before, you're still gonna say "Ouch!". You're still going to have to deal with the shock to the system, the pain and the healing - and questioning how could I be so clumsy?!

Basically, the churning for me consists of the ongoing need to square things with myself. Not to gain anyone's acceptance, approval or support, but simply to come to terms with the inevitable questions and confusion that comes with an obscure, erratic and debilitating illness...

Do I have the right diagnosis?

Shouldn't I be doing better than this?

Are my doctors using the best treatment or should I find new doctors?

Are they missing something really big?

Is there something I'm doing or not doing that's making things worse?

Is this just the way life is going to be?

I hope this insight is helpful. It can be easy to assume this kind of emotional turmoil is because of what someone said or a self-esteem issue or that you have the wrong perspective - when it's simply part of your inborn survival mechanism being kicked into overdrive by a relentless illness. Trying to ignore or brush it aside is kind of like a fire alarm going off and not even checking to see if your house is on fire...

"Bah Humbug!"

Usually, by the first of December I'm "Mr. Christmas" - excited about sending out Christmas cards, putting up lights and decorations and visiting family and friends. Even with the illness, I'm usually thrilled about the holidays. But so far, I'm just not into it at all.

A psychologist might assume it's depression, since a hallmark of depression is losing interest in things you used to love to do. And when you're fighting a chronic illness day-after-day and even simple tasks have become overwhelming then of course you're depressed! Right?!

Well, not exactly... It took me many years to figure out what was going on underneath the surface. I'm not saying depression is not a common factor in scenarios like this for many people with chronic illness, but for me that isn't it...

In a nutshell, it's basically the self-preservation mechanism kicking in. When a person goes through extended periods of stress, pain, fatigue, etc. you reach a threshold where your brain refuses to voluntarily do anything that has even a little bit of stress/pain included. That includes even the fun stuff. It's not an attitude problem. It's not an outlook issue. It's not that you need a new perspective. It's simply that you need a break... You might be able to push through a few tasks, but your brain is going to fight you all the way.

Now, it can certainly be helpful to try to adjust your perception of a task. There have been many times where I've been able to work through this self-preservation roadblock by telling myself that the task isn't as hard as I perceive it to be or just taking the approach that I'll just give it 5 minutes and then I can stop if I still don't feel up to it. Of course, this chunking big tasks into smaller tasks is pretty much a daily necessity for anyone with a chronic illness, but my goal here was mostly to illuminate that even with the best outlook, perspective, determination and tons of optimism that with a chronic illness you're likely to be living close to your brain's limit of stress. And when you reach that limit, even the fun stuff might be a challenge...and it's not a matter of mood or state of mind, but simply your basic human need to get a break from the pain...

Turkey for one?

For the last several years, I've gotten used to spending Thanksgiving alone, as well as most other holidays. That's partly because all of my family is in Texas and I live in San Diego - but mostly it's because of the chronic illness. My wife took off with my best friend in 1993, and a big factor was that she saw that I was getting sick and she wanted to run away.

Being the sociable person that I am, I built a new social life after that, but over the years those friends pulled away, for various reasons - but most of them related to the illness. And I had a girlfriend or two along the way, but eventually illness derailed my dating life. I've got some close "real-world" friends now, but after having to cancel countless times due to illness, they eventually stopped inviting me. And actually, it's a relief to not get social invites as long as the illness is as profound as it is.

So I'll enjoy Thanksgiving tomorrow - grateful that I'm even still here. It's completely understandable how such a profound illness could lead to even the friendliest person spending the holiday alone. And I'll have a good time, despite flying solo. However... It still just seems so bizarre, that that dedicated family man of long ago, whose life revolved around his wife, stepson and family and friends for so many years, is alone.

My brain isn't puzzled at all, but my heart still doesn't quite accept it. Granted, many people with normal health also find themselves alone due to circumstances beyond their control. But perhaps the harshest reality is not being alone but the realization that an overwhelming chronic illness makes it extremely difficult to do much about it. Most social avenues, such as dating, require at least a minimal amount of predictable and consistent wellness. And for someone like me, the illness is so overwhelming that a social life isn't even on my radar screen.

My main thought was to share how illness has impacted how I spend my holidays and what a huge contrast Thanksgiving is now compared to all those years when it was a big event with longtime friends and family - and to express my empathy and support for anyone in a similar situation. No doubt, it's just part of life that loved ones come and go and sometimes being alone is inevitable. But even though I think I have a great perspective about it, I sometimes still feel a "flare-up" of that deep familiar "ouch" - that disconcerting churning that I didn't deserve such an injustice. Like any normal and compassionate human being, I wanted so much to believe that even with a chronic illness, that those who I dedicated my life too would have stood by me the way I would have certainly stood by them...through sickness or health, come what may...

"Uh,I think we're going to need a bigger fire truck!"

Anyone familiar with chronic illness most likely understands that the simple things are no longer simple and that the inherent physical burden of being sick, fatigued and in pain dramatically limits what you can get done each day. But lately, I've realized there is another key factor that I don't think many people are aware of.

For me, when I roll out of bed, I'm usually quite sick. There's a huge shock to the system as my body screams at me that something is terribly wrong! Of course, I already know something is terribly wrong! Duh! But as accustomed as I am to starting my day with that profound run-over-by-a-truck feeling, each episode usually generates churning thoughts that demand attention...

"Are the doctors missing something big? Do I really have the condition they say I do, or is it something else?"

"Am I really getting the proper treatment? Shouldn't I be doing much better on this medication?"

"Did I do something yesterday or the day before that contributed to me being so sick today?"

"Jim, you've got to do something! You don't want to go on living like this, do you?! You've got to rattle some chains with your doctors! Or check yourself into the Mayo Clinic! Do whatever you have to do, but do something different - because this isn't working!!!"

I'm sure you can relate to starting your day with a similar built-in workload of mental and emotional effort. It usually takes me at least a couple of hours to shake off the sickness enough to feel up to doing anything, but my first activity is usually responding to those alarms and sirens, assessing the details behind today's flare-up - often evaluating if I've called in every available resource to respond to these ongoing "emergencies". And I also try to reassure myself that if this "fire" can't be put out, that at least I'm doing everything humanly possible to avoid going up in flames...

A matter of character

What some people don't realize is that the driving force behind me sharing the good, the bad and the ugly of my daily challenges with chronic illness is not to garner attention, sympathy or even support. Mostly, it's about integrity and the desire to feel connected to those I care about.

Watering down or spinning my situation to make it seem minor when in truth it profoundly impacts my life would basically be trying to sell a lie. Losing your health shouldn't mean you have to lose your character...

My private marathon

With a chronic illness, just hanging on can be just as much of an endurance event as a marathon is for a healthy person - and with a chronic illness you have to do this marathon effort every day, even for those tasks that for most people are simple...and there's no medal...and no cheering crowds...

"Mr. Giddy"

Sometimes it really stands out that I have an uncommon perspective on adversity. I think a lot of my friends don't realize that despite feeling sick 24/7, that I'm usually in a good mood and often downright giddy! I guess it'd be easy to think I've just detached from painful emotions as a coping mechanism - that I just discard the negative and focus on the positive. But that ain't it...

I treat every emotion as valid - even the painful ones. I don't try to just put them behind me or avoid feeling them, but rather I tackle them head-on. I try to understand what's going on beneath the surface, to come to terms with those feelings of hurt, loss, fear and doubt. I try to figure out what's causing each emotion and what I can do about it. Often, just validating the existence of that emotion is all that's needed to quell the churning, but sometimes I have to take a moment to grieve...giving that kid in me heartfelt support with something such as "I'm so sorry, Jim, that you've been so sick for so long..."

Like anyone, I don't want to be sick! It's frustrating to have so much enthusiasm for life, but to have such limited energy. BUT I'm not going to let adversity rob me of my joy! I'm not going to require that I have the life I ultimately want before I'm happy! Yes, finding someone to share my life with is still very important, but I'm not putting my joy on hold until that happens! I'm determined to find a doctor or a treatment or some kind of way to restore my health - but in the meantime I'm still going to be "Mr. Giddy" every chance I get!

And despite the messages from the world that infer that my situation is sad, or tragic or a wasted life, I beg to differ. I know in my heart that God hears every one of my prayers. That everything I'm going through is part of His plan. That this often-lonely storm is not about the world discarding me, but rather Him choosing me to carry out a mission that only I can do...

My prayer is that this post might help others who are struggling with similar adversity to better cope with their painful emotions and find someway to believe that this life still has meaning. That there truly is a purpose for the pain...That despite how it looks, that this isn't a wasted life. And most of all, I hope that no matter what you face each day, that you too can always find a little joy to call your own... :)