Living with a Chronic Illness

A short time ago at work, I was told by a well meaning idiot (at least I Think he was well meaning - I'd hate to think he's simply that stupid, ill informed, and insensitive) that my "real" problem (while speaking about stress, and it's effect on my Lupus) was that I "take everything too personally and too seriously."  Really?  That's your answer to living with chronic pain, an illness that has No Cure, that I will die With even though I won't die Of?  The temptation to knock the ever lovin dog snot out of him was almost overwhelming.  Thankfully, I restrained myself, since this well meaning idiot is a member of the management team at work.

For the clueless amongst you, let me fill you in on a few details about living with a chronic illness.

Think back for a few minutes about the last time you were sick.  Remember that feeling of lethargy, the apathy, the aches in every joint and muscle and bone, the feeling that your head is about to split itself from back to front and not necessarily along the lines of the bones in  your skull, the desire to do nothing but lay there curled into a little ball while you prayed that somehow  you would simply die because it would hurt less?  Remember telling yourself, more than once, to just hang in there cause it would be over and life would be back to normal in a day or two?  Remember hearing that from well meaning friends who thought it would cheer you up to realize that it was going to be a short lived trial?

Now, think about all that on a daily basis.  Think about waking up like that Every Morning for the Rest Of  Your Life.  Think about not being able to look forward to a time when you Won't feel that way any longer - unless you're looking "forward" to when you Die.  Think about knowing that time won't make it better, drugs won't make it go away - they'll only temporarily mask the symptoms, and sometimes the side effects of the drugs to mask the symptoms are worse than the actual symptoms.

Now think about how you are going to feel, every time you hear someone tell you, "if you'd just Do more"... or maybe, "it'll be better if you just give it time".... or how about, "you're just using it as an excuse to be Lazy"... or "well if you're so Sick, then how come you aren't in the hospital, or at the doctor's office"  or one of my favorites..... "If you're so Sick, then how can you look so Healthy?"

Do More?  There are days when simply getting out of bed long enough to walk to the bathroom to piss is a trial - forget "doing more" or "being more active."  Moving more isn't going to make my joints, bones, muscles, and connective tissues hurt Less - it's going to make me wish some random gang punk would do a senseless drive by and accidentally kill me.  It's going to mean that instead of actually feeling well enough to stand at the sink for half an hour tomorrow to do dishes, I'm going to be in to much pain to do more than lay in bed hoping that my heart will spontaneously stop, because that will hurt less than how I feel at that moment.   Do More?  Sure - as soon as my doctor quits arguing that pain meds are "addictive" - despite the fact that he knows as well as I do that Nothing short of Class 3 Narcotics does anything to even Dull the pain, and I'm going to live in pain for the rest of my freaking Life, whether I've got pain meds or not.

Go to the hospital?  Why? So the doctors and nurses can treat me like I'm simply a drug addict looking for a quick fix?  So they can be condescending to me, and act like I'm a child in grade school who's faking it to get out of class on test day?  So I can be told there's nothing they can really do for me, short of giving me a shot that will last perhaps 5 or 6 hours before I'm right back where I was when I headed there?  So I can have ever higher bills that I have no way to pay, because insurance only goes so far before the insurance companies decide that you're a bad investment and stop your coverage?

Go to the doctor?  Why? To be told that nothing has changed, and nothing is going to change?  To have him look at me like I'm a hypochondriac or a fake looking for drugs because he's not a specialist?  To get argued with that I can't Really be in as much pain all the time as I say I am, or I'd have taken myself to the hospital?  To get told that they won't give me any kind of decent pain killers to make life bearable because I "might get addicted" to them?  WFT?  Do I look like I Care whether I "might get addicted" to something that I'm going to need for the rest of my life Anyway???

Give it time?  Oh that's rich - give it time.  Time, despite the old cliche, does Not heal all wounds.  Time Kills.  Time just makes me remember that I'll be alive and coping with this crap for a Very Large Space of it.  Time isn't going to make this simply go away - it's not a broken bone that will eventually set and grow new tissue over the break point.

Excuses.  I quit bothering with excuses years ago.  This isn't "my dog ate my homework" or "sorry honey, the car gave me trouble starting and my cell phone was dead - had to wait until some random stranger could give me a jump start before I could plug my phone in and let you know I was gonna be late."  Going to the boss with tears of pain streaming down my face asking to go home because I can barely move isn't some Excuse not to work - I can't turn the waterworks off and on at a whim.  And calling in, barely able to move enough to pick up the phone To call  in - same thing - that's not an excuse to sit at home being lazy, that's wishing I would just die and get it over with because it would hurt less.

So how is it that I manage to smile, to get on with life, to not end up in the nut hut a gibbering loon, or in some rehab facility screaming in withdrawls because I can't get pain meds?

I've dealt with this for 20 years now.  I've learned to live with it - for the most part.  I've learned that dreams are for other people, unless it's a dream of being able to live pain free and some semblance of "normal."  I've learned that whether I laugh or cry, it's going to hurt the same.  But that when I'm crying, everyone disappears because they don't want to have to deal with it, and if I'm laughing they at least can pretend that I'm as normal as they are.  I've given up the hobbies that made me hurt so much for a week after taking part in them that all I could do was pray to die quickly - and that's a lot of them, especially any of them that are outdoors in the extreme heat or cold unless it's at night when the sun has gone down.  I've learned to (kind of_) like living like a vampire to avoid over exposure to UV, so that it doesn't cause me to flare worse.  I've learned (mostly) to do what I can to manage the stressful areas of my life so that they don't cause me to flare up worse than usual.  I've learned (sort of) to ignore the pain until it reaches a level where "normal" people would be screaming for narcotics before I even bother to mention that I hurt "a bit."  I've learned to come up with other, at least semi-legit, reasons why I can't go out and do this that or the other with friends, so that they don't think I'm looking for sympathy. 

And I've learned to do my crying over lost hobbies, extremes of pain, a loss of normalcy, or the fact that I'll have to cope with this for the rest of my life in private - both because the crying does little good, and inevitably someone thinks I'm just looking for attention or sympathy over nothing.