How can we not be? We get up every day and take on a challenge
the not a lot of people around us can understand. Many would ask to be stranded
on the top of Mt Everest in the middle of the winter before they volunteered to
take this on. We often complain and we are just in doing so. We are tired all
the time. We hurt all the time. We have to keep going even when it truly feels
like that is not even an option. Someone asked the other day “How do you
explain the fatigue from fibro in contrast to the fatigue from a long day at
work?” This was (part of) my answer:
“…when it’s fibro
fatigue I want to sell my kids, divorce my husband, and sell my soul to be left
alone to lay down and die”
So often we focus on the facts, and the facts are painful. There
are a lot of things we can no longer do, or do less often. It has changed the
way we eat and sleep. It has changed relationships and job status. Everyday
experiences are more stressful, less enjoyable and quite often are avoided. It
has changed the way people perceive us and even worse it has changed the way we
perceive ourselves. It takes over every molecule of our being so it’s only
natural to change along with it.
But the reality is we are stronger than these little bodies
try to make us believe. I always call Fibro a cannibal because over the years that's the best way I have found to describe it. It eats away at you from the inside out and even gets you to destroy yourself. But you are MUCH stronger. Muscle weakness shmeakness I say. We are
not special because we are ill.
America
is supposed to have the best health care, and by study after study you can
clearly see we are the sickest and most unhealthy people anywhere.
. How many
diseases, syndromes and conditions cause muscle weakness? How many cause
unimaginable fatigue? How many change the way we live our lives? How many cause depression anxiety and mind numbing pain? Uuuuummmm a
lot! In fact most of them. Even when you see the uber positive, crazy
happy people…you all know one at least. They are never pessimistic or negative.
The ones who SAY “I didn’t change
anything… I am still a great wife, I still work, I still bike and I am kicking this
thing in the teeth and I will not be held hostage by this”, well they still
have changed. They change what they eat, the medications they take, or
treatments they receive. They change the
circle of support they have to incorporate people who are also ill. And yes,
that means they have changed. They adapted to the new body and like
it or not they reach acceptance with it. You can say you will never accept it
or you are still fighting it. I hear it all the time. I did it myself for a
long time.
"I have learned nothing
I am not better off
Nothing good came out of this
I am not thankful for any of it
I wish I would die
No one knows what I feel like"
It’s a process, a long ever changing, difficult to master
process.
But you did accept it, at least in part. The fact that you
looked for answers means you accepted it. Looked for the right doctor, joined
support groups and read books on it. You may not be happy about it but you know
it’s there and you can’t deny it. But I say we are special, not because we are
ill, but because we continue to live with illness. We could lay down and die,
take a bunch of pills or drive that car
into the lake. But we don’t. We are indefatigable.
We wake up everyday and do all
over again that which cannot be done. We live every minute with
something there seems to be no cure for. We live with people misunderstanding
us, judging us, and telling us everything that’s different from what we used to
be. We live everyday not knowing what our bodies will do next to betray us
next. We live with the side effects and collateral damage. We live. We keep on
living. We do anything and everything we
can to get through each damned day and we do not rest until these bodies demand
we rest, and even then we are NOT happy about it. There is always something
else we would rather be doing. ALWAYS! How can that possibly mean we are any
less than anyone else? We are not. You are not. I am not. I say it makes us stronger.
This is not a “think positive” speech because either you do,
you don’t, or your working on it. But you can train your brain to work with you.
To realize you are not less than anyone else. You have adapted to your
conditions like the Red Squirrel, Arctic Fish or even us having 5 fingers.
Adaptations are to help survive in harsh conditions and that’s what the body is
doing. You are tired because your body needs that energy to fight off the
invaders! That doesn’t make you lazy! What? You are adapting for crying out
loud! Stop thinking of yourself as weak, tired, or incapable! And if you have
to fake it till you make it…try this;
- Instead of saying: I was too tired
- Say: I chose not to do that today
- Instead of saying: It hurts too much
- Say: I’ll try it again later
- Instead of saying: I can’t
- Say: I don’t want to right now
- Instead of saying: That always causes a flare
- Say: that’s not the best thing for me
- Instead of saying: I wish it would just go away
- Say: Someday it will hurt less, I can wait
- Instead of saying: Why is this happening to me
- Say: I will learn to listen to my body
- Instead of saying: No one knows what I feel like
- Say: There are a lot of people going through the same thing, boy are we strong
Retrain your brain!
Dum dum dum dum dum...”I pick things and
put them down” HA sorry, I had to.
If all you can do fake it, then fake it!! You know you have
already had a lot of practice faking plenty of things like..oh, lets see, do I
need to make a list? Naa, Im done with list making for today. But I will leave
you with one, The biggest fake out
perpetrated by you and everyone with chronic pain and illness..
"I’m Fine"
So drop the fine and declare that you are adaptable,
capable, and Friggin’A you are
Indefatigable!!
I love this list! I'm going to make a copy and carry it around on my phone so I have it handy. Today I can simply say: Someday it will hurt less, I can wait!
ReplyDeleteGentle Hugs,
Bonnie
By the way, my website address has been changed to: http://myordinarysimplefibrolife.blogspot.com/
ReplyDeleteSame name, different URL
I noticed you have my old site on Blogs I Browse.
TY! This list could be much longer but I figured I made my point. Ty alo for lwtting me know about the URL change. Im on it :)
DeleteThis was wonderful. I am always frustrated with all that I could not get done, but I rarely stop to take a look at and appreciate all that I did accomplish in the day! I tell my loved ones that I hate being weak and they always look at me with confusion, saying that I am one of the strongest people they know. Dealing with fibro and still raising my four children and working full time is truly an accomplishment. I will definitely start saying things differently. Thank you!!
ReplyDeleteThis is such a freakin awesome post! The list is great and we all need to carry it around in our pocket. I had to include this post in my Sunday Inspiration post because it is one of the best things I've read this week.
ReplyDeleteThank You guy!! I really need to people like us to see somethings as just temporary, or manageable. We have control over so little it's about time we start we taking control of our thoughts and how we see each other, and how we put ourselves out there to the world, so hopefully every day doesn't seem like the end of the world!
ReplyDelete