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Tuesday, February 24, 2015

At Least It's Just Fibromyalgia


This post probably isn't going to gain me any popularity, but that's ok.  Those of you who know me, know that this blog has never been about popularity.  It's about speaking my mind concerning Fibromyalgia and other chronic pain and fatigue illnesses, no matter the outcome.

The friend of a friend said to me recently that she heard I have some health issues.  I replied yes, that among a lot of other things I have Fibromyalgia.  She was silent for a minute and then she said "At least it's just Fibromyalgia.  It isn't like it's something that could kill you like cancer or something."  Without missing a beat I looked her directly in the eye and replied with "I'd rather have cancer."

Eyes wide and mouth gaping open she was stunned into silence for a few minutes.  When she regained her composure she asked if I was serious.  I told her that I was completely serious.  I explained to her that Fibromyalgia is a strange illness, in that it effects people in different ways.  It has varying degrees of implications on different people.  Some people have it enough to notice it and have it be annoying, while others are completely bed-ridden from it.  I've even known of a lady who in a flare couldn't stand up and walk, and had to crawl on her hands and knees to the restroom.

Don't get me wrong, cancer is a horrible monster that causes pain, agony, and destroys lives and families.  I wouldn't wish it on anyone. So does Fibromyalgia though.  With cancer, the pain and agony is going to end.  No if and's or but's about it.  The pain and sickness will come to an end.  Either a person is cured or else they die.  With Fibro, there isn't any end in sight.  It's an entire life stuck in an earthly hell of pain, fatigue, co-morbidities, and sickness. 

In my thought process, I'd rather have the chance of a cure and at least knowing if it doesn't work that my pain will end anyway.  Yes, I'm thankful to be alive but thinking about having to live for 40 or 50 more years trapped in this hell is daunting and to be completly honest, I'd rather not.  No, I'm not suicidal in the least, I just would rather not have to live this way knowing it could be decades upon decades.  

I'm a big quality vs quantity type of person.  If I can't have a good quality of life, than I'd rather not have it span out for decades.  The diminished quality of life that I lead, has much to be desired.  It has tore apart my family.  It's isolated me from friends and family.  It's left me depressed.  The level of pain that I feel with a flare of IBS; a co-morbidity of Fibro, is incomprehensible at times.  My latest episode a few weeks ago left me screaming and my daughter ran into the bathroom just in time to see me pass out from the pain and fall from the toilet to the bathroom floor.  -And I've had four children without any type of pain relief.  I'm not just some whimp!

A couple of nights ago, I sat at my desk with tears running down my face from the pain I was experiencing in my neck and shoulders.  I finally realized that I was sitting with my shoulders pulled up as far and tight as I could.  Although that was my bodies natural reaction to the pain I was experiencing, I knew that it was only making things worse.  It took every ounce of concentration I could muster, to keep relaxing those muscles and allowing my shoulders to go back down to a natural position.

My daughter kept begging for me to make a box of brownies.  Last night as tired and fatigued as I was, I decided to make them for her out of the guilt I was feeling.  I had to stop stirring the batter several times due to the pain and cramp in my hand.  Twice while trying to stir the batter I had to stop and grab the bar on the stove, and slowly bend over stretching my back due to the pain I was experiencing from standing for those few minutes.  

My symptoms are so severe and I have so many co-morbidities that I'm deemed disabled and I'm unable to work.  That further restricts my contact with other adults and the outside world.  It leaves me poor, as I live on less than $750 a month.  That means that not only can I never vacation - oh how I dream of a week long vacation on a beach somewhere lounging around in the sun, splashing in the water, and sitting in a hotel hot tub.  Eating out and not having to cook or do dishes - but I struggle to put clothes on my back and food in my house.  Eating out is a rare luxury.  I've decided to try to see a movie at the $3 afternoon rate once a month, so that I can have something to look forward to and to do.  Of course, it'll all depend on how I'm feeling that day.

Every single day, I have 12 or 13 meds that I have to take.  A couple are once a day, but most are two to three times a day.  I hate taking meds with a passion.  Even as a teenager I'd suffer through pain instead of taking a Tylenol.  

At times, I'm left feeling stupid or embarrassed due to Fibro Fog.  For those that don't know, Fibro Fog is the name given to the cognitive delays one can experience with Fibromyalgia.  I'll be in the middle of speaking (or writing) and forget what I was even talking about, let alone what I was going to say.  I'll walk into a room and forget why I went into the room.  Shortly after starting this post, I went into the kitchen to make a cup of coffee.  I opened a bottle of water to dump into my Keurig, and found myself instead pouring it into my coffee cup.  It made me mad and disgusted with myself.

Insomnia (leading to sleep deprivation), another wonderful co-morbidity of Fibro.  It literally rules my life.  I've been awake for 36-48 hours at a time.  I've been so tired that I've literally cried.  Not getting the proper rest leads to more pain and depression.

Not every person with Fibromyalgia experiences it as severly as I do, so please don't read this and think this is definitely going to be your life.  On the other hand, some people with Fibro experiences symptoms more extreme as I do.  Such as the lady who had to crawl to the bathroom.  There's just no way to guage how it's going to effect a person.

All of this combined plus more that I didn't even delve into, leaves me saying yes, I honestly would rather have cancer than fibro.  Given the choice, I'd choose neither.  I'd choose to be illness-free.  I'd choose to be healthy and happy and a productive member of society.  That isn't the road that God chose for me though, so I'll awake every day.  I'll go through each and every day with as much optimisim as is possible.  I'll make the best of each day as is possible, and do the best I can.  I hope this post doesn't offend anyone and if it does I'm sorry ...but I won't apologize.  These feelings are mine.  They're real, and I own them.





15 comments:

  1. I know exactly what you mean! I can't express that as someone in my family is suffering with Cancer now and may not understand it. And it's not only the pain, it's the stigma of fibro and the fact Drs. don't even understand it! At least if it were a cancer people wouldn't judge us!

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  2. Agreed Cindy! I meant to add the stigma part to the post too, but forgot it. It's a bad fibro fog day for me.

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    1. I have a blog on here too Amy and I added you to my blog list and your blog is now showing on my blog page. If you add your favorites please consider me! Thank you!

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  3. Thank you for sharing, I feel the same way so many times. I think a good day is if I do not cry that day. I too crawl to the bathroom many times or have to have my daughter pull me up the stairs, so yes I understand what you are saying. I have to try daily to fight to keep the suicide thoughts out of my mind, because it would be easier to just die. The only thing that keeps me here is my love for my daughters, so I force myself out of bed everyday, do what I can, which may be just resting, but I keep praying I can endure. I have been doing this for over 30 years, I hope I can still fight. Thanks again for your words, it said my feeling so well.

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  4. I think the hardest part, besides the pain and physical problems, is the change in how I see myself. Before I got sick I was the poster child for Super Mom. I worked, was involved with my kids, sang in the choir, girl scout troop leader, entertained, and had a thriving social life. Now I can't do any of that. My life has shrunk to my home and my mom's house. On a good day I can do one thing...grocery shop, vacuum one room, or one load of laundry. On a bad day, I stay in bed.
    I am one of the lucky ones because my husband is amazing. He has stepped up and taken on everything I can't do. He is supportive and wonderful. And even he doesn't get it sometimes.
    I don't think I've responded before, but I wanted you to know how much this blog has helped me.

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  5. YES YES YES THANK YOU!!! This is exactly what it's like. There is no end to the pain. And if it does stop for a while you can't get too excited because it always comes back. Then you deal with "well you were able to do it yesterday, why not today?" Because stfu, that's why. Lol. I feel like with other diseases you at least know what to expect. You at least get support from doctors and the community. But with fibro? Very little support from anywhere. It's isolating and at times hopeless.

    And the best if when they question if you really want to get better...

    Oy. Thank you for this post. And thanks for letting me vent.

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  6. Thank you all for the comments! I'm happy to see that I'm not the only one who thinks this way! <3 & gentle butterfly hugs to you all!

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  7. Point well made! Thank you for this wonderful post.

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  8. I cried through this whole post because of all the recognition. I have to choose what my chore of the day will be and hope I can can complete it without flaring up so badly my partner has to help me to the couch before I collapse.
    If I cry only once a day, it's a "good" day. The worst is when I hurt so bad all social skills fly out of the window and I'm unable to tell my partner what kind of hell I'm going through. Basically, he needs to be psychic (he unfortunately is not) and has to remind himself I'm not just having a random raging fit but I'm unable to handle the excruciating pain anymore. It puts so much pressure on other people too that I feel guilty for waking up every single day, because I have no idea whatsoever how the day is going to be. I feel bad for possibly sucking energy from people because I know like no other how precious energy is.
    I'm somewhere near suicidal, some days worse than others. Because I too have had enough of not knowing if this is ever going to get better. And it has already affected me on so many levels I feel I'm not living anyway. Having had no quality of life for years and no idea if that will ever change to me feels like being on death row, but without having a set date on when it ends./rant

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    1. Oh sweetie, I know it feels like to want to just give up ...but you can't. You have to fight! Who knows when the "big breakthrough" will happen. If you've been around my blog and/or facebook page much you'll know that one of my biggest motto's is "Never Give Up Hope". We can never let go of hope. Hope of better days, Hope of understanding. Hope of a cure or at a concrete universal treatment plan that works for everyone. If you are feeling suicidal, I beg of you to call the national suicide lifeline at: 1 (800) 273-8255. I absolutely couldn't bear to lose another fellow fighter. Please, please know you're not alone, and that there's millions of us out here that understand what you're going through. Feel free to vent on the facebook page any time you need to. Others will be there to support you. If you aren't already a "liker" over there, it's at: facebook.com/TheFibroFrog. I'm sending you a gentle butterfly hug ....and HOPE. <3

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  9. Cancer relapses. They don't say you beat cancer, it goes into remission. It can go into remission for years but it's not that it might come back it's expected to if you live a long time after it goes away.

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  10. There is nothing in this world like having someone understand exactly what you are going through on a day to day basis. But you nailed this. I am crying because of this and I whimpered because I know what it's like. It has taken over my life. I never leave the house anymore. I do not go out dancing anymore. But I do have a loving amazing partner here in England with me. I give thanks to Second Life for bringing us together. I moved from Texas to be here with him. Please feel free to contact me if you have this horrible disease.

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  11. Thanks for sharing your story! I think a lot of people have the misconception that Chronic Pain means an annoying achy back that bothers us sometimes and we just need to push through it and get our minds off it. While that may be true for some, it's certainly not always the case! I've actually had to face a number of pain conditions including Fibromyalgia. Just recently I'm finally getting the help I need to manage my pain. I hope you can find some help too! I've started a blog to help others at: www.healhope.com

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  12. I have had fibro for thirty-one years. My wife has survived colon cancer and breast cancer and she has said she would rather have cancer than fibromyalgia. She's seen what I've been through and would choose more cancer than fibro. Check out my blog at CallahanWriter.com

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  13. What you have wrote here is exactly how I feel but cannot get in into words. The whole Cancer thing.... I have just been thinking the same although came to a different conclusion that I wouldn't want Cancer as like you say. You can die and at least with fibro we live!! but when in a flare I do understand your thoughts as then, I too feel as if it is worse. I hate to say it and think it as not ever having Cancer or the treatment for it I have no idea what it is like but I do understand your thoughts on it. We suffer and have no end. Apart from times like I am going through now. I change of medication has given me life again. Positive thoughts are flowing through me. Words are easier to find and my life seems livable once again. So please maybe go review your meds and be able to have some good times. I don't know how long this will last. I am on day 3 but I do know I don't want to go back to feeling I wish I had Cancer rather than Fibromyalgia!!
    Great post. Thank you very much for explaining my life. xxx

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