The older I get, the more I am made constantly aware of the increasing burden Fibromyalgia places on my life. The ever-present pain, the chronic fatigue, the migraines… these are all things I’ve become accustomed to dealing with and I’ve learned to just accept that I’m either going to push through it or not. Some days are better than others. The thing that really hits me when I’m knocked on my face (not literally) is that I’m only 28 years old. My body works against me … more and more. But even that isn’t what bothers me the most.
The other day I was on the phone with my husband and before we hung up, as usual, he asked me if there was anything I wanted to tell him before we disconnected. When he’s offshore, we only talk twice a day because that’s all the time he has so we have to make every moment count. I told him there actually was something I wanted to tell him but I couldn’t remember what it was. That happens so often now… and it’s so frustrating. If I don’t write it down, it’s lost forever in a sea of mental fog.
When he called after his shift before going to bed, he asked me if I ever remembered what it was I wanted to tell him. Of course, I hadn’t. Before I even realized how upset that made me, tears started streaming down my face. I didn’t want our bedtime conversation to be a somber one so I didn’t mention that to Barry… but I got so emotional as I imagined what my future might hold. I just kept sniffling and complaining that my nose wouldn’t stop running — but in reality, I couldn’t stop crying. As I type these words, my eyes are already welling up which reflects how terrifying it is to me. Am I going to end up being a burden to my family — to my husband — one day soon?
I hate dwelling on things I can’t change and I don’t like feeling like I’m throwing myself a never-ending pity party so I do what I do best – suffer in silence… but that’s starting to weigh on me and I feel so alone in this battle. A battle that over the last few months, I’ve started to feel like I’m losing for the first time in my life and it’s scary. I hate when people try to tell me, “Oh that’s normal… I do that sometimes!” I feel like no one understands the extent to which this is affecting me. It’s NOT normal for me to forget literally EVERYTHING.
You know how you walk in the door and you put your keys down and then later you can’t remember where you put them? Imagine doing that EVERY time you put ANYTHING down. You know how you’ll walk into a room and forget what you went in there for or going into a store and not being able to remember what you needed to get? Imagine doing that almost EVERY time you start to do something. I went to Walmart specifically to get Avalyn’s lunch for her field trip. I walked in the store and couldn’t remember what I went there for. I grabbed a few things… all the while trying to remember and I couldn’t. I felt helpless, and I finally gave up.
I checked out… went home. Avalyn came running out to see what I had gotten for her to eat during the field trip the next day and my heart dropped. :( I was so embarrassed… and I had to go back again. And this kind of thing happens ALL the time. It’s gotten to the point where I can’t do ANYTHING without a list. Simple things. Yet I try anyway… because not being able to is so frustratingly disappointing. But then when I fail despite my best attempts, it’s spirit-crushing and I just want to cry. I’ll think, “I don’t need to write that down. Surely I can’t forget something that important.” Yet I do. Time and time again. Each time I tell myself to STOP believing I’ll remember but each time I just WANT so badly for my mind to not fail me.
It breaks my heart to think of my husband 20 years from now trying to take care of me and keep me in order when I can’t get around well because of the pain, stiffness, and the other physical challenges that come with being SO exhausted no matter how much rest I get … or not being able to keep track of things on my own because my mind always feels as though I just got ripped out of a deep sleep. Tears, tears, and more tears. I just want to feel normal and I don’t want to have to live with the fear that comes from knowing how much worse it’s gotten in just the last couple of years — and the torment of wondering what 10 more is going to do to me.
#NaBloPoMo:
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It’s a good thing you blogged about this today because I wanted to message you about this very condition. (See, I forget EVERYTHING too.) Being that I am only recently diagnosed, the perfect medication combo has not been found yet. So my pain continues. And my mind is slowly shutting down. Or trying to. I refuse to let this disease get me.
I just wondered if you’ve found ANYTHING that helps the flairs. Right now, it is 2 a.m and I can’t sleep due to the pain. I can deal with the daily dull pain that is just below the surface, but it’s the flairs that knock me on my butt.
Thinking of you. Honestly, I never understood all this pain and fibro talk I’d read/hear from other people. I fully admit I was a skeptic. And then it hit me.
Read Heather´s last post ..A Closer Look: Editing and the First Draft
I’ve always maintained without meds. I’m terrified of them to be honest. :( I have been dealing with this for almost my entire life — next year will be two full decades, and I’m just so tired… emotionally exhausted from just dealing with it… the pain, I’m so used to that I can get through it most of the time — sometimes it does get unbearable and I have to let it overtake me. It’s the loss of cognitive function that is killing me inside. I feel so helpless. I’ve always been the one to refuse to let this illness “get me” and now I’m becoming resentful as I face the notion that I may have no choice in the matter. I have only written 9 posts on my blog about Fibromyalgia because I never wanted to acknowledge it. I suppressed my feelings, ignored my pain, and “suffered in silence” as my mom always said until it got to the point where I just couldn’t hold it in anymore. My husband and I have been together for 14 years and I only just recently started being honest with him about how it affects me and how much it’s on my mind. Amazing — the only thing I don’t want to remember is the only thing I can’t seem to forget :(
I do have Voltaren and Lortab which I take when I absolutely have to. It doesn’t keep me from being in pain but it does help take the edge off so that I’m able to at least go to sleep when I can’t handle it anymore. That’s about as good as it gets for me, unfortunately. Check out FibroWHYalgia by Sue Ingebretson… she’s an amazing inspiration :) Sorry I’m not more help :/
Wow. I can’t imagine suffering for nearly twenty years already.
In one way, I am thankful that I found out even if it was odd how it happened, but on the other hand, it sucks.
I know I don’t have to tell you that.
I know it’s hard to accept, but I’d encourage you to look into getting a medication. Cymbalta and Lyrica have seemed to work for me, however, right now she has me on Savella as she is experimenting on hitting all my issues with the least amount of pills as possible.
While my mind is slowly leaving and I worry what that means 10, 20 years from now, the meds do seem to help. I am not an advocate of medication and would prefer to go holistic if possible. I just pray that you can find the relief you need. Acceptance, I am guessing, is the first step. That’s where I am at now, but not ready for step 2, whatever that may be.
thank you for the link I will check her out.
As a side note: it could be my old lady eyes, but I have a hard time reading the comment font color.
Read Heather´s last post ..Thankful
I guess it’s just really hard for me to move forward and acknowledge that I’m past the stage where I can manage med-free. I’ve always tolerated it, no matter how bad it’s gotten… and although I do realize it’s worse and it’s much more difficult to go without meds, I’m still not at that place where I can accept that they’re necessary for me. Call me a glutton for punishment… I don’t know. Eventually, perhaps.
Yeah it’s really light in the text box when you’re inputting the comment — thanks for reminding me; I’ve been meaning to change that :) I’ll do it now!
Kat-
Let me first say what an amazing woman I think you are.
When I first came across you blog I was like wow she has 7 children and still has the energy and time to do A, B and C. Then I learned of your condition which to be honest I didn’t know much about so I researched it.
Then I really wondered wow how does she do it, how does she endure the pain and still push on, being such a positive light and doing so much for her family. Then I picked up on the fact that your husband wasn’t around daily to help you manage everything and I was like I really need to step up my game.
Kat, I can’t begin to imagine what you are going through and what you must do to get it all done but I wanted to let you know what a great job you are doing.
I am sorry you had a rough night the other day and that it had you do emotional.
I do hope today you are in better spirits.
Much Love to you girl!
Bless you and your family
Thanks sweetheart… I have people ask me that all the time and the only real response I have is that I don’t feel I really have any other choice. lol I either push through it or … I don’t. And not pushing through it doesn’t even feel like an option. You have no idea how much the support and understanding means to me. It’s one of the main reasons that I keep my blog going when there’s barely time to focus on it… because it gives me an outlet, and lets me know people care. I draw strength from you guys when you visit and let me know that you’re wishing well for me. I appreciate your comment!!! Today is better. Mornings are generally hard no matter what I do, but I do have relatively “good” days sprinkled here and there :)
I empathize with you completely. I write lists but forget to take them with me. So, lists are not always the answer either. Or, my purse is so disorganized because of all of the lists, I can’t find it.
I can’t take pain meds due to allergies so I just live with pain. At 62 I have lived like this for close to 40 years now. Life goes on.
lkish77123 at gmail dot com
LOL! Ohhhh how I can totally relate with leaving the lists! I normally use Android apps (I love Out Of Milk and GTasks) to help me keep track of things, but what’s really frustrating is when I’m dumb enough to think I don’t need to write things down and then I forget and I get so mad at myself :( Out of Milk is great because it has a web interface so I can enter things on my computer and then access them with the app on my cell phone. It also has a To Do task list manager with programmable reminders as well as a shopping list which lets me unput prices and calculates my total with tax and all which helps me manage money — SCORE!
If your purse looks anything like mine, you have ten thousand Walmart receipts and can’t even retrieve your cell phone once it gets lost among all of that! LOL! *hugs* I’m so sorry you’re having to endure this illness :( By the time I’m 50 I will have dealt with it for over 40 years so I walk in almost the same shoes as you. I don’t have allergies but I’m terrified of side effects since Bextra gave me heart palpitations for 2 straight days and then got taken off the market for killing people — I’d rather be in pain than not be here at all, ya know?!
Praying and believing you won’t be. MATTHEW 18:19,20
“Truly, I say to you, whatever you bind on earth shall be bound in heaven, and whatever you loose on earth shall be loosed in heaven. Again I say to you, if two of you agree on earth about anything they ask, it will be done for them by my Father in heaven. For where two or three are gathered in my name, there am I among them.” (Matthew 18:18-20 ESV)
Thank you, Erika. I appreciate your prayers, babe!!
Kat,
You are an amazing woman in more ways than one. I admire your strength and desire dealing with this for so long without meds. Although I haven’t officially been diagnosed with fibro, I too, suffer in silence with daily pain and the sense of “I just do not feel myself” but I pray and try to keep a positive additude just to get through the days. Some people just don’t understand so I keep it to myself so not to get the stares and head shakes as if it’s all in my head.
Like you, I also worry about where this will lead me down the years. I’m a bit older than you but still feel I am too young to feel this way. I trust however that it will get better! I have some things I want to share with you. Things I’ve found that have worked to some degree without having to resort to meds. I will reach out to you shortly or you can contact me. Until then, take care hon!
Read Dee´s last post ..Huggies, Wal-Mart & You Partner Together
I remember us having a conversation about Fibromyalgia and your concerns about what you’ve been going through. Have you been to a doctor since you commented this in November? I hope you’ve been able to get some answers… *hugs* Thinking of you, Dee!!
I know exactly what you mean. I forget everything all the time. 16 years of this ‘mess’ and there are days when I can’t even think of the word for a tree. Luckily my family has learned to understand my ‘hand gestures’. My fiance and I will be driving down the road and I’ll say, “I wonder….” and then it’s gone! He used to ask me what I was going to say (as if I decided that I didn’t want to tell him) and has finally understood that I really don’t know.
I’m always thinking that I am a burden to him. He does so much every day for me that I feel guilty. I guess he wouldn’t be with me if he didn’t want to help me through all the good and bad times. But it still worries me.
Read Tami´s last post ..Tomboy in a Princess Dress sung by Suzi Shelton
Oh I got choked up reading your comment just now! I hate describing how I feel to some people because they tend to say things like, “Oh that?! That happens to me all the time, that’s nothing…” but they don’t GET IT. It’s not nothing. It’s not your normal slip of the mind. It’s constant and it’s frustrating and it’s terrifying. I hate that you deal with it but it’s nice to know someone who actually GETS IT! It took my husband years to really be able to identify with the heartache I experience regarding that type of thing. He finally understands that it hurts to feel so out of touch with myself… and for my thoughts to leave me just as quickly as they came :(
I’m sorry that you are dealing with it. I say every time I find someone who is going through what I go through that I wish I could take it from them. I deal with it anyway, what’s one more bout?
Now I have something called PNES, another thing I can’t stand and feel so horrible and embarrassed about. I wonder if life is just a never ending kick in the ass. (Sorry, I’ll be more positive.) This is a non-epileptic type seizure. (http://en.wikipedia.org/wiki/PNES) My fiance has taken to calling it that I ‘passed out’. But that takes away from what I’m going through. I loose weeks at a time forgetting what happened from ‘passing out’! That’s not normal! That’s not passing out, that’s a seizure. And I know it’s another thing that he has to worry about and take care of, but this is something that I have to GO through!
Sorry to whine, but thank you for commenting on my comment. If you ever need to chat, I’m always around!
Hi Kat
I’m in an internet cafe waiting for my car to get serviced and found your site while browsing the web.
I was so touched by your description of what happened about not being able to remember what you wanted to tell you husband……
….and how you didn’t want to upset him and so you told him your nose was running.
I’ve only “known” you for a few minuted but I can already tell that you are a wonderful lady and that your husband and Avalyn are so lucky to have you in their lives.
I have no advice for you. I don’t think you need any. But I wish you all the best of everything in dealing with the difficulties in your life
God Bless you
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Read Dave E Wilkes´s last post ..Symptoms of Fibromyalgia in women – who else wants to stop them?
Thank you for your kind words :) I appreciate you “visiting” and commenting.