Aug 18, 2012

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.


Stacy said...

Toemi! Thank you for writing this and having the guts to share it. Surely the friends who see you on a regular basis will appreciate it even more than me, a far-away friend, can. I'm so sorry you're dealing with this awful disease. I'm sorry about how much it is robbing from you. But I am inspired by your fortitude, your determination, and your ability to laugh and engage in life despite the pain. You are such a beautiful, funny, energetic person, even on days when you can't muster the energy to show it or see it. WE see it. I adore you. And I'm praying for you! <3

Amanda said...

I seem to lack writing skills today. It's a good thing Stacy posted first. I totally agree with every word she says. Tosin, my heart goes out to you. In the short, few times I've spent with you, I've felt blessed. Your inner light glows brightly. Even on your darkest days I hope you remember that you are loved and you are worthy of that love.