On the
Arthritis Foundation website, they have a feature called “Look Up By Body Part,” which allows you to select a body part and see what symptoms are common
in that area of the body.
I started
looking at it and I realized that for me, the question isn’t what does hurt,
but what doesn’t.
It’s
creeping in. And not slowly, I’m afraid.
Increasingly
I struggle with hours of morning stiffness, doing and undoing buttons,
maneuvering my coat on, and fastening my bra.
My left ankle has been swollen for the last few weeks. I haven’t really had issues with my ankles
before, so this doesn’t make me very happy, to say the least.
I feel
like I am becoming my 86-year- old grandmother.
And I mean no disrespect by that at all.
It’s just incredibly frustrating and discouraging to see my body in a
constant state of flux, and not always in a good way.
I am
trying to play the “I don’t need meds game,” but I think I’m only hurting
myself at this point.
And 5mg of
Prednisone is unfortunately doing nothing for me. I wish it was. Because I hate being on steroids. And if 5 mg is doing nothing, that means I will
probably have to consider the option of increasing the dose. And I don’t really want to do that.
On a good
day, “X” marks the spot. I can easily
pinpoint one or a few areas where I am in pain.
On a bad day, I can’t pinpoint the pain.
It’s everywhere. And it weighs me
down. I feel like I have the weight of
the world on my shoulders, and my shoulders feel like they will collapse under
the weight of everything.
Sometimes
when I get really exhausted, I cry. Like
a four-year-old. But I’ve come to
realize that this isn’t a babyish thing.
It’s frustration. That I want to keep
going, even when my body says stop. And
sometimes fighting against it works better than other times. But that’s the thing about this body. When it wants me to stop, it makes me
stop. Pain and exhaustion are hard to
fight against.
And Thanksgiving
was crazy, in a good way. We were in New
York with my boyfriend’s family. And his
brother got married the day after Thanksgiving.
It was busy. And I was worried
that I would crash. But I didn’t. At least not while we were gone. But just a few hours after getting home, pain
and exhaustion hit me. This isn’t a
reflection on the week that we spent away.
Overall it was pretty chill. We
didn’t go to bed super late, and we were able to sleep in. We didn’t do a ton of strenuous
activity.
It’s just
me. This is my body. It’s the way it works now. All activities cost me, whether I want them
to or not. I fared very well overall on
this trip. I think a lot of it had to do
with excitement and adrenaline. I skated
through and didn’t really have to think about it. Even though my boyfriend’s family was very
good about checking in with me about how I was feeling.
This is
just the way it is. I lucked out. For the time we were away, I felt reasonably
well. And now my body is paying me
back. You get a reprieve and then you
suffer the consequences of that reprieve.
This is about checks and balances.
A reprieve isn’t free. It comes
at a cost.
And I know
this. But I think this is one of the
hardest things to accept about illness – that my body has limitations that I
just can’t always fight against.
I woke up
this morning feeling pretty bad. I got
up and went back to bed three times. I
didn’t even know if I would have the energy to write this post. But here I am.
I wish I could
say that tomorrow will be great. It might be, or it might not. The reality is that I don’t know from day to
day, or hour to hour, for that matter, how I am going to feel.
And I try
not to burden other people with this. I could
complain all the time, about every little ache and pain. And there are certain people in my life who
do get the laundry list of things that aren’t working for me. But I don’t see how complaining serves me or
anybody else. I guess I do vent my
frustrations here, and maybe that is akin to complaining. But I’m not trying to be whiny. I’m just stating the facts.
Life is
hard. I have good days, and I have bad
days. It’s a good period when the good
days outnumber the bad days, less so when the bad days outnumber the good. And I’m eagerly awaiting the appointment I have
with my rheumatologist in about ten days.
I wasn’t supposed to see him until February, but things seem to be
getting worse and not better and we need to figure out what the next step is
going to be.
I know how you feel. I have Fibro and Hashimoto's Thyroiditis and my 85 year old mother has more energy than me on a good day. I don't really have many good days at all. If I make a lunch date with an understanding friend we have to confirm how I am feeling. Do I like this? Heck, no. I feel ancient, and uninspired and anxious sometimes. My Rheumatologist at least believes in Fibro. as so many other doctors didn't but he knows he can only help; we both know there is no cure. Believe me when I tell you "I feel your pain." I really do. Laurie at Hibernationnow@wordpress.com
ReplyDeleteI suffer from permanent chronic pain thanks to nerve damage and your comment about crying struck a chord. Often I feel so overwhelmed by everything that I can't do anything but cry. It's like I am leaking out the extra pain that I can't handle.
ReplyDeleteBeing limited by the pain is infuriating, especially as you see all your contemporaries going along with a 'normal' life and you are stuck - hurting. It is great that you were able to enjoy Thanksgiving and the wedding and I really hope that you are over the worse of the payback.
I hear you and thanks for writing about this. I had a very similar experience with Thanksgiving. I did very well traveling and made it through the holiday and weekend without any major health incidents. Everyone was so pleased and almost surprised that I was able to participate in the festivities. And then I came home and basically crashed and haven't been feeling so well since then. I always hope that when I am doing pretty well it will just last and that it is my new normal. But I am usually disappointed. Hope that things start moving in the other direction and that you and your rheum come up with a good plan. Hang in there.
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