fibro letter to normals - my love and attempt at an explanation to family and friends

I am writing this so that people who love me can understand, people who are curious can understand, and also maybe even to try to help myself understand.

I have spent years of my life tired and in pain and sad.  Only it is so much more than that.

I never admit that I have been diagnosed with fibromyalgia because I have only ever heard negativity towards it.  But the thing is, it is real, and it really sucks.

I have noticed that over time, my good days have become fewer and farther between.  Good days are the days when I am able to wake up and function like a normal person or get the things done that I need to before I crash.  I think it is confusing for people to understand what it is like for me because they see me on days I am able to push through.  But on days when I just can't, I often have to let people down.  I hate when I have to do that.

I often can't settle into a comfortable sleep.  I have nightmares every night when I do sleep.  I toss and turn quite a bit.  I cannot even tell you the last time I woke up feeling at all refreshed.  Every day is a struggle to make myself start my day.  Getting myself ready to leave the house is an extremely exhausting experience for me.  I have to stop and sit often.  I am always late and I always hate myself for it.

I get in trouble at work because I am not consistent or reliable sometimes.  I am smart and have ambitions and I let myself down most of all for not being the educated career driven person I know I should be.  But for some reason I just can't let go of that and be a "disabled" person.  I'm not sure I will ever get to that place.  So I just keep trying.

I hate this whole thing.

I hate that I will never be the vibrant active person that I used to be.  I hate that my life and energy have been taken away from me.

I hate being in pain.

Sometimes I actually forget some of the pain I feel every day.  I have programmed myself not to notice I think.  There are these weird muscle spasms and random sharp pains and tender points that are always stressed and I just have to make myself ignore it most of the time to get through the day.  I have days where I simply can't get out of bed or lift my arms or climb the stairs.  Those days are the scariest.

I get embarrassed because I feel like people just think I'm lazy.  I push myself to do as much as I can, but sometimes I just can't walk that far or stand that long or wake up.  Sometimes I push through and find a way to force myself to do things, and then I end up having to sleep for days straight afterwards.

All of this makes me depressed.  I hate that part too.  But I think that feeling this way for as long as I have would get most people down.

My toes are numb.  My hands ache.  Some days I can't grasp things like a pencil or drop glasses because I can't hold on to them.  That is probably the thing that I have been scared of most lately.

My body does not tolerate transitions well.  Going in and out and in and out make me uncomfortable and pained.  I am sensitive to lighting and temperature and particularly humidity.  I can feel the changes from the top of my head to the bottom of my feet.  And guess what?  I know that I'm sweating.  You don't have to tell me.  But you can hand me a fan or a towel and I will be extremely grateful.

I mourn the kind of person I should have been in this world.  I will never know her.  She had my smarts and my wit - but she could DO things.  She didn't let people down.

I know that my family is a blessing to me and that they get me through this.  I wish I knew there would be some way to repay them.  I give what I can of my good days to them.  And I know that they deserve better.

I am glad for the friends who are there to share the good days with me.  Inside I will always be a fun-loving thrill seeker.  I appreciate being able to let loose and dance when I can and that I have people to do it with.  I hope somehow they can forgive me for the times when I can't do this or be this way.  I hope they know that on some days I am just as happy to be there and watch them do things I used to be able to do.  And to laugh with them.  The laughing keeps me sane most of the time.

I count on people to remind me who I am.  I feel such deep gratitude towards those who can just take me as I am and enjoy me anyway.

I feel trapped in myself and it is a scary feeling.  My body is like a prison.

I get so angry sometimes and it comes out in such strange ways and that makes me feel guilty.  I have never been able to understand the pressure and frustration that builds up inside me.

I let people down.  Every day.

And then I unfairly ask you to love me anyway.  Surely some part of me is still deserving of love.  I try to repay those who are able to do it, but not always very well or consistently.

Fribromyalgia.  This thing is real.  It is a disease.  It has stolen my abilities.  It is invisible.  It is hard for me to explain.  It has no cure.  Treatment is uncertain and changing and unreliable.

It is what I have, but it is not who I am.  I am still me inside.