Tuesday, August 28, 2012

She Doesn't Do Anything To Make Herself Better

When I meet new people and tell them what I do, which in turn tells them what I have, I get a variety of responses. Curiosity, that's common. Empathy sometimes too. Compassion, not really, but I think that's because I work so hard to appear "normal" for the few hours a week I leave my house and am around living and breathing people. From the folks who know what Fibromyalgia is because they know someone who has it, nine times out of ten when I ask how that person functions I am told, "Well, not too well. But she doesn't really do anything to make herself better." Which royally pisses me off but in order to further our cause and not alienate the healthy I sweetly let them know it is startlingly common for Fibromyalgia patients to have a really crappy quality of life.

There is validity to this point, don't get me wrong, but it's such a common judgment marker that really shows me how far awareness has to go. It is extremely difficult to function, let alone "do something to make yourself better" with Fibromyalgia. People just don't get that. More to this point, however, is the fact that yes, we the patients must do a lot to make our lives better. This illness will literally take it all. Health, sanity, happiness, relationships, family, career, housing, health insurance, automobile, the freakin' clothes off your back. All of it. Everything a person holds dear and needs to survive this crazy game called life. Simply the act of getting Fibro managed for a great many people is the hardest thing they will ever do in their entire lives. But nobody seems to know this, cares to listen or begins to understand. They don't acknowledge what fighters and survivors we are just to get up in the morning and struggle through each day with a 10,000 lb. elephant sitting on our backs. So yes, we do have a responsibility to do as much as we can to improve our symptoms, but our progress cannot be measured by the expectations of a healthy person because we are not healthy people.

Some truths about Fibromyalgia:
1. We are sick, not depressed. Now we may be depressed because living with chronic illness is depressing but Fibromyalgia is not a mental illness and is not caused by depression. It is caused from a variety of different reasons working together.
2. We hurt as bad as we say we do, and often even more, but at a certain point the pain gets so big it becomes impossible to describe. Yes clothes, jewelry and even the lightest touch or sitting up can be excruciating. This pain is not being made up or over exaggerated for the sake of gaining empathy. It really is that bad.
3. We cannot take an over the counter sleep aid and count a few herds of sheep and fix our insomnia. Our central nervous system is ramped up and won't shut off. We could count the grains of sand on the beach and still not fall asleep because our sensory input is going haywire, hence the out of control and indescribable pain. On the rare occasions sleep isn't an issue there are still physiological problems present that prevent us from reaching the deep sleep stages necessary to maintain the human brain and body.
4. We don't forget things because we are aging, spaced out or drugged up. We forget them because we are cognitively impaired. See #3, don't sleep for two weeks and then tell me how sharp your memory is. Now just keep doing that for a few years...then add aging, medication and a life full of problems to that already impaired memory. And pain, constant and relentless pain.
5. We are sick and keeping up with the affairs of the healthy is usually one of the first things to go. When something is so important we can't bear to miss it we conserve our resources and push ourselves hard to engage in the activity along with everyone else. This doesn't mean we aren't in pain, only do things we want to do and use our illness for an excuse to get out of everything else, or don't pay dearly for the push. It just means if we are gonna be bed bound or in so much pain a torture rack sounds lovely, it's gotta be something that's worth it.
6. We want more than anything in the world to have our lives back. We miss our careers and friends and family. We pine for our independence and to become the capable people we once were. There isn't much we wouldn't do to have our health back, regain our lives that have been flushed down the tubes of pain and sickness. However, refusing to try every exotic berry, supercharged vitamin or special diet that crosses our path does not mean we like being sick and want to stay that way. It simply means we don't want to try that exotic berry, supercharged vitamin or special diet because we have tried hundreds and haven't found a miracle cure yet. 

So I guess that is my long winded rebuttal to the calloused statement that got me started on this rant in the first place. No I don't speak for all patients, but from the thousands I have met I know my words ring startlingly true for entirely too many.

Thanks for joining,
Leah

23 comments:

  1. Thank you so much for being real and for writing this post (and every post!) Because of your transparency and authenticity I no longer feel alone in the Fibro hell. <3

    ReplyDelete
  2. that most certainly hits the target! How true!!! I am one of the luckier ones because most of my friends totally support and seem to understand me. While some have no idea about the pain, they believe me when I say I ache.

    heather

    ReplyDelete
  3. Thank you for yr wonderful,,always spot on blogs.I am going to figure out how to print this to send to certain family members,who after 8 years,still think I'm choosing to avoid them by staying home.....or,,that one time they saw me at my sons40th bday party,had no idea I started getting ready at 9 am,and was in bed for 2weeks after.....but I looked so good they said!!!! So,thanks for putting this in the perfect format to inform them .Keep doing the wonderful work you do,,,,this blog and group have been saving my ass since you started....bless you xxxxxx

    ReplyDelete
  4. Leah....you have nailed it. My good, and dear lady goes through this h*ll everyday - picking her battles and when she does fire up enough steam to go out and do something special, she knows that the next day(s) will be the price of that shred of pleasure. Bless you for what you do and being able to put into words what so many Fibros can't. Thank you.
    Gren Robinson

    ReplyDelete
    Replies
    1. Thank you, you wonderful man!! You get it and see that your honey is ill. Thank you for stepping up to be an outsider looking in. Your post meant a lot to me, just as much as the "Leah Rant."

      Delete
  5. I am so happy you are on our side. You put things so eloquently, Leah. Thank you.

    ReplyDelete
  6. Very well put Leah! Thanks for saying it so well!!!

    ReplyDelete
  7. Are you sure you're not in my head? You just have a way with words that is so great! :-)

    ReplyDelete
  8. This post couldn't have come at a better time. Thanks for being you!!!

    ReplyDelete
  9. All I can say to that is, AMEN SISTER!

    ReplyDelete
  10. Well said! As anyone else with FM knows, we have tried EVERYTHING to get better & would do ANYTHING (almost) to have one pain free day.

    ReplyDelete
  11. Beautifully written. I think that your bullets clearly echo the sentiments of anyone with fibro. I appreciate your ability to "to tell it like is."
    Lori
    www.justbreatheslowdeepbreaths.com

    ReplyDelete
  12. I had have fribromyalgia for two years, at the beginning it was terrible, I did not want to do anything because of the pain, I stared taking Savela but the pain went worse. Thanks God I went to the psychiatrist and he prescribed me Lyrica and Cymbalta at the same time, as soon as I stared the treatment I felt a great relief, I could not bealive it, I was so happy. I play tennis, but at that time I could not. But I restared playing tennis for half an hour twice a week and at the next day all my body ached for 2 or 3 days, but I kept playing despite the pain and finally my body was became used to play and now I can play every day, I do not have any big pain, I feel happy, I thanks Gog for my health, I think medication and excercise are the best combination, I enjoy to play tennis, that makes me happy. One day I thought my life was over but it was not true and now I have a normal life. I hope this could help someone somewhere.
    Rebeca

    ReplyDelete
  13. Thanks for speaking the words I feel. Everything said is on target.

    ReplyDelete
  14. Thank you!! That is all I can think to say!!
    THANK YOU!!

    ReplyDelete
  15. I have fibro, my hubby takes verry good at taking care of me thanks to all of you for being there

    ReplyDelete
  16. Leah, your writing is amazing. My best friend has Fibro & asked me to read your blog.

    Thanks you for sharing your life, blessings to you and your family.

    Keep writing!
    Smooches

    ReplyDelete
  17. "We want our lives back" Actually, I do have a life. I laugh, love and enjoy it.
    This is the life I've been given so I'm going to enjoy it.

    ReplyDelete
  18. thank you Leah....it's the life I've been given and I'm blessed with a wonderful husband and three gorgeous children ....
    I smell a lot of roses now and have taught my children valuable lessons in life at a very young age...i can no longer hide it and given up the game . It is what it is....lost many family and friends but I can tell you the best have hung around cause i was and am worth it.....
    I've become bullet proof and i see magic in everyday life and tell my children they are magnificent the way they are....
    I've been taught compassion ,empathy, patience and above all appreciation for the air i still am blessed to breathe..
    I want to live...................................

    ReplyDelete
  19. Leah~Thank you from the bottom of my heart. You are telling mine and so many others story. I just found your blog and am so excited to read what you are writing...it is nice to be "validated", and I can't wait to share this information with so many people that TRY their best to understand, but I believe, still think it is all in my head. Thanks again! I look forward to reading more.
    Take Care~
    Kimberly H
    Lk Stevens WA

    ReplyDelete
  20. Fantastic post. I've been blogging for awhile, but was just diagnosed with Fibromyalgia in February. I am going to share this post with everyone.

    Starting with my family.

    Google is a chronic PIA, so... www.accidentallybydesign.com

    ReplyDelete
  21. Your blog certainly hit a chord with me as I have been trying to find a way of finding meaning with the cards that I have been dealt with that leave me with severe pain on a daily basis. I look forward to reading your insightful posts and am grateful that you take the time to share your story so poignantly. If you have time, please check out my new blog called "Living," with Chronic Pain
    http://chronicpainandstillsmiling.blogspot.com/

    ReplyDelete