As I continue down this path of living with rheumatoid arthritis, I find myself regularly pondering how to respond to friends and family when they ask "How are you doing?". RA is a weird thing because it comes and goes at will. Of course, my wife knows without any questioning or verbal information from me. She can see the signs. But others don't live with me everyday, or have a thorough knowledge of RA, so it's much harder for them to understand. Therefore, I thought of creating a scale of 1-5.
5 - Yea! I don't even remember I have RA. (I honestly can't remember the last time I felt this way but hope it happens in the future)
4 - Having a good day. I can live pretty life pretty much normally. Be productive at work, cook dinner, garden a little, walk the dog, perhaps exercise. Maybe feel a few reminders in those ole joints and experience some loss of energy but have a kick in my step. I've had some of these since starting on Enbrel.
3 - I know I have RA. These days I will have joints speak clearly to me reminding me of stiffness and pain. It slows me down and I'm not able to accomplish everything I want. Usually morning and evening are the hardest. But I can feel good about being somewhat productive. Can get by without a nap. These seem to be the most common with me lately.
2 - Bad Day. I hurt and I'm stiff all day. Energy level is low. Walking up and down the stairs is not fun. Every task is difficult. Naps are required. Prednisone steroid is necessary. I must scale back my to-do list.
1 - Horrible. Fatigue is kickin' my butt, laying around most of the day, every joint is swollen and stiff, feel like nothing helps, am worthless for anything productive, simple tasks are impossible, feel most guilty and worthless. Fortunately, I haven't had many of these in a while (thanks to Enbrel)!
But the system above is probably more for me than for explaining to others. I'm thinking a quick thumbs up, thumbs sideways, and thumbs down as a quick response.
At the least, I want my friends and family to ask and I don't want to mislead them by giving the standard "I'm fine" response. I want to be honest yet succinct. I'd be curious to hear how others respond.
Andrew
I can answer that question truthfully with my family and friends. But, at work it's a different answer. I always respond with "Im fine". It is usually apparent how I feel, I have the limp-o-meter, and the arms stuck to the body-meter. Or the I'm not picking that up meter, if it falls on the floor I must not have needed it. My mouse is in my lap-meter, can't reach for that today.
I find it hard to be honest at work, I have only missed 3 days in 5 years over RA. Its funny how they remember 3 days and not the other 1500 or so days I was there hurting or not.
Its ok to be out for gall-bladders, or diarhea, or a headache. Its also ok to be out because you had your teeth cleaned or an eye exam, for others.
And I get to be reminded of the 3 days I was out because I may be too ill to keep working.
It makes it hard to be honest about how you feel
That's great that you've only missed 3 days of work in five years! There is a balance with how much info is too much in given contexts.
I like your "limp-o-meter".