Pearls and Dreams
A few days ago, Madhouse Man, blogged a rather funny blog entry about going around the country and being the ER Residents worse nightmare.
While he meant it to be funny, and it was in fact, hilarious, it really got me thinking about the pain scale and other health indicators that doctors tend to look at, that people who deal with chronic illnesses may or may not be typical in how they 'present' themselves to their doctor. So, I've decided to write a letter to my health care providers.
Dear Nurses, Physical Therapists & Doctor's,
First, I want to say thank you very much for everything that you do for me. I do understand that your job is hard, and when you throw in a complicated body like mine into your day, it makes your day that much more difficult. I appreciate all the thought, caring and work that you put into helping to make me the healthiest me I can be.
What this letter is about though, is I want you to look past what you see for a moment. I need you to remember that sometimes, even if I'm in your office, I get tired of being sick and tired. If you ask me "how are you?" I just might answer "I'm fine" out of sheer habit, or out of sheer stubbornness and refusal to be anything but.
I might be laughing in spite of pain that would have a healthy person in tears. When I say "This hurts here." I don't mean, "this hurts a little bit" I mean "THIS HURTS TO HIGH HEAVEN AND BACK AND IS INTERFERING WITH MY SLEEP AND MY FUNCTIONING"
I do not bother you with annoying pains. I do not say anything about pains that are chronic that do not keep me from doing anything or do not wake me up at night. I do not complain just so that you can write it down in my medical file or have you feel sorry for me.
I think most of you know this about me. I think you take me seriously, but forget sometimes I hide behind that smile. I don't think you ever think I am being frivolous, but I am not sure that you understand that I am not being up front because I am tired of it all.
I can't complain about every thing that needs to be taken care of or treated. I can't tell you about everything, there isn't enough time in the day, or enough treatments in the world, I have to prioritize ... And I know that there are times when things come up, later than you'd like, that you'd wished I'd said something earlier.
But, you need to understand, I already feel like I am forever and always complaining and the cycle never ends. It is fatiguing being chronically ill. It is wearing emotionally to have to be on my guard for conditions that must be taken care of. I just want it to stop and to not be something that has to be mentioned ... So I hope it will go away .. And I hope ..And I hope ... And I hope ...Until I have no choice. That's when I tell. Or, one of my other doctor's specifically asks a question that brings it out.
There are a few things you need to know about me, if you don't already:
1. I never feel good physically.
A) I always hurt: my hands, elbows, shoulders, feet and knees have not NOT hurt in over 10 years.
B) I never have the energy I should have.
C) At best, I feel like I'm either coming down with the flu or getting over the flu.
D) I refuse to give in and I am going to enjoy my life in spite of the pain, in spite of the fluey like feeling and in spite of the fatigue. So just because I'm smiling and laughing and having a good time, does not mean I'm feeling good ... It means I'm ignoring my diseases.
Here's where it gets hard and what I need you to know. I still need to be treated. I hate being sick and I would rather come in and have a nice cup of coffee with you and visit about anything than talk about what's going on with my health. I like talking things of medical nature, so when you start explaining things to me, sometimes I forget it's me, and just get into the discussion ... You may think I'm adjusting to the news ok. I'm really not listening ... I'm learning it as if it doesn't even apply to me. I'm learning it as if I was in my biology class and learning something abstract and unrelated to my life.
You have no way of knowing any of this. You all think I am such a compliant, cooperative patient. Easy going, and absorbing the knowledge. You have no way of knowing that I am on disconnect half the time. I don't know how to get past this, but I do know, I am not the only chronically ill person out there like this. I do know that many of us play down our symptoms. As many things as we complain about, as much as you hear ... There is so much you don't.
Somehow ... We need to get on the same page. The problem is, I'm not likely to open up and you have no way of knowing all this unless I tell you.
Sick and tired of being sick and tired