Last Thursday, we had the best ARGUMENT SESSIONS workshop yet - it flowed and it was fun. The commute was rough on my feet and knees, but I felt like my body did pretty well compared to the last one. Then on Friday, we did the Pilates demo for the EDS-NYC Group and I pushed too far (I wanted to make my instructor look as good as she is, but she talked a lot while I had to hold positions that I don't usually hold. I should have spoken up, but didn't. My fault.)
So I had a couple of days where I was really terribly sore and stiff. Not normal sore and stiff, but EDS sore and stiff. It took me quite a while to recover.
A Fine Balance by Bev
Today, I had PT and then Rick and I went out on the tandem bike to pick up some things we needed. It was hot and humid again, and I felt kind of sick toward the end, but recovered pretty quickly when we got home. Last time, it took me over an hour to recover from being out and about in the heat.
The thing is that I never know! When I'm asked if I will be able to do something or other on a certain day, I have no answer besides "I'll have to wait and see". And I know how frustrating this must be for everybody.
Christine Miserandino, who has lupus, writes a blog called "But You Don't Look Sick". She has written a post explaining what she calls "The Spoon Theory", which has become an oft-quoted article in disabilityland. In a nutshell, her friend asked her what is was like to have lupus. Christine handed her a bunch of spoons from the diner tables to represent how much energy she could have to do things - ANYthing - on any given day.
To quote Christine: "Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control."
The article is very enlightening and you should read it. But what it boils down to is that every day I have to choose, not just what to spend my energy on, but what to spend my pain on. Low-level constant pain is there all the time. I decide how much to medicate (how much my stomach can stand, in the case of NSAIDS, how awake/aware I have to be in the case of opiates) and when - because I often don't. (My rheumatologist wishes I would medicate more, but opiates make me nervous.) And then I decide what I think I can do without adding too much pain or discomfort (like nausea). And then if there are things I want to do that aggravate me a lot, I decide if it is worth it to do it anyway.
Any show I'm invited to, any dinner or drinks invitation, an offer of some giveaway clothes if I can just come get them - these all have to be weighed.
And I always want to say "YES"!
And sometimes I do. When I shouldn't. And I physically regret it later. Because I have to take care of myself.
So I'm still learning what I can and cannot do. And I hope y'all won't let that stop you from asking me to do stuff with you. I may say "no..." most of the time, but I miss you. And I want to say "YES!"
And if I say "YES!'"and later realize OOPS! it should've been a "no...", I may physically regret it later.
But emotionally, I'll be soooooooo happy I saw you - it'll be worth it!
So I had a couple of days where I was really terribly sore and stiff. Not normal sore and stiff, but EDS sore and stiff. It took me quite a while to recover.
A Fine Balance by Bev
Today, I had PT and then Rick and I went out on the tandem bike to pick up some things we needed. It was hot and humid again, and I felt kind of sick toward the end, but recovered pretty quickly when we got home. Last time, it took me over an hour to recover from being out and about in the heat.
The thing is that I never know! When I'm asked if I will be able to do something or other on a certain day, I have no answer besides "I'll have to wait and see". And I know how frustrating this must be for everybody.
Christine Miserandino, who has lupus, writes a blog called "But You Don't Look Sick". She has written a post explaining what she calls "The Spoon Theory", which has become an oft-quoted article in disabilityland. In a nutshell, her friend asked her what is was like to have lupus. Christine handed her a bunch of spoons from the diner tables to represent how much energy she could have to do things - ANYthing - on any given day.
To quote Christine: "Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control."
The article is very enlightening and you should read it. But what it boils down to is that every day I have to choose, not just what to spend my energy on, but what to spend my pain on. Low-level constant pain is there all the time. I decide how much to medicate (how much my stomach can stand, in the case of NSAIDS, how awake/aware I have to be in the case of opiates) and when - because I often don't. (My rheumatologist wishes I would medicate more, but opiates make me nervous.) And then I decide what I think I can do without adding too much pain or discomfort (like nausea). And then if there are things I want to do that aggravate me a lot, I decide if it is worth it to do it anyway.
Any show I'm invited to, any dinner or drinks invitation, an offer of some giveaway clothes if I can just come get them - these all have to be weighed.
And I always want to say "YES"!
And sometimes I do. When I shouldn't. And I physically regret it later. Because I have to take care of myself.
So I'm still learning what I can and cannot do. And I hope y'all won't let that stop you from asking me to do stuff with you. I may say "no..." most of the time, but I miss you. And I want to say "YES!"
And if I say "YES!'"and later realize OOPS! it should've been a "no...", I may physically regret it later.
But emotionally, I'll be soooooooo happy I saw you - it'll be worth it!
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