So I’m sure many of you have had those hours, days or even weeks where you have the “Why Me?” syndrome. You know what I’m talking about. You are in a flare, you are depressed, you are having major foggy brain… you are just doing what you can to function and get through the day. People around do not really get what this feels like, we look normal – yet we are suffering (God I hate that word, “suffering” – don’t feel sorry for me, I just can’t think of another word). You start to question what the hell did I do to deserve this f’d up thing called Fibromyalgia? For starters… you probably worked your body and mind for years to the point where everything finally just crashed and burned. I have to believe that’s what happened to me. No, I don’t deserve it. Living with it is not fun… it’s never fun. It’s a struggle to keep my emotions in control. I challenge myself every day with staying positive, smiling and not falling down that deep dark hole of depression. Most days I win, some days I lose.
Working full-time is honestly about all I can do these days. It sucks. Every week I start working on Monday, I get to Thursday and I’m struggling by the afternoon… on Friday I’m struggling all day. Saturday I try to get up and out of the house and do something fun, sometimes it works out, sometimes it doesn’t… Sunday ends up being a day of forced rest. It’s a cycle that I have come to know very well. I’m pretty sure I’ve written this in my blog once or twice (maybe even three times) before. I appreciate that I have a job that allows me to work from home. I don’t know what I’d do if I had to commute everyday. I am thankful for the job that I have, it’s not the job as much as it is working in general. I get resentful that it takes all my good energy. What’s left at the end of the day is like the warning message you get when your laptop/phone is about to die “Warning! 10% remaining…”. Lately I’ve had to just “shut it down” and go to bed and try again the next day. I am a professional TV viewer. Well, maybe not professional, if you ask me what I just watched I can probably tell you the name of the show, but not what happened IN the show. I’m too anxious to read, no energy to go out and a lot of the time I sit and think “what should I be doing right now?”, yet as many times as I ask myself this question, I hardly ever get an answer. It’s crazy. I should know what I want to do and how I want to spend my time, yet each day it’s the same thing.
How am I doing this week… The dreaded question… or better yet, “What’s wrong with you?”, “What’s going on with you?”, “Is something wrong?”, you get the drift. Hmmmmm, so many ways to answer that question. Yet, I can’t come up with any new material. I’ve used up all the standard answers… and yes, I’m in pain all the time… and yes, most days I am depressed and I totally get that I’m not always that responsive. I really am doing my best. My best isn’t always good enough, I get that. Thus, the “Why Me?” syndrome. I really don’t want to live like this, it’s not a choice. I’m well aware of my mental and physical state… all the time.
What does it mean to live with pain? Well, the obvious answer, to those of us living this dream life, is I need help (I apologize for the sarcasm, but this damn “Why Me?” syndrome really brings out the worst in me). I need a lot of help. I need help washing my hair, doing the laundry, cleaning the house, cooking the food, shopping, walking the dog, worst of all – driving… the list is endless. It’d be easier to answer what I don’t need help with. I need help thinking, processing information, remembering. When I’m feeling like this, I can’t remember my name sometimes. Don’t look at me like I’m crazy because I can’t remember something… I already feel crazy. It means, what takes a healthy person 30 seconds to do will sometimes take me ten times that… hell 50 times that on a really bad day.
This past week-end I decided I wanted to do some things around the house. I thought I’d surprise my husband, who was gone for the day, and do some laundry, wash the sheets and the duvet thingy. Well, I got up and did some cleaning, took all the sheets off the bed and the duvet thingy off the comforter. Did I mention I have the easiest bed to make? I did two loads of laundry and I started to make the bed when WHAM! My body was like “OHHHHH, HELL NO!! You are not going to do that!!” Awesome. The fitted sheet is on 1/2 the bed. I’m laying on top of the bed in excruciating pain. So! Now it just looks like I made a mess and I’m too lazy to make the bed (and the real topper is you can’t even tell the sheets were washed). The best intentions… I did manage to finish making the bed, but not before my husband came home. Surprise! What a fail. I was exhausted, in pain and frustrated that I couldn’t finish what I started (I did mention I have the easiest bed to make, right?). Ever had one of those days?
Annnnyyyyyhoooooo, as you can see, I’m having one of those weeks. I don’t want people to feel sorry for me. I just want to express what I’m going through. I want to know my normal is normal to others with Fibromyalgia and Depression. I want people who are in relationships with people like us to understand… you know, really get that we appreciate the help but most of all we need you to support us by understanding. Plain and simple. Understand life with FMS/Depression is what it is. We have to accept it, we want you to as well. There are no miracle cures. We may feel good today and not be able to get out of bed tomorrow. Don’t act surprised or wonder why… we have no answers. Trust me, we want answers. We want a cure. We want our independence and freedom back.
Please let me know how you are doing. Share your experiences with me. Most of all, relax.
Thanks for reading.
Stay cool!
Tamiko
my foggy brain 
that sound just like me i stared to cry way me 7/23/2013
I just found out I have this problem. .why do I see it or feel it like a huge problem to my life..because it is. I not the person I was before…n now with everything I have or feel so much hurt..it’s just that hurting all over.. why me.. why I’m still feeling this way.. I take all medication they give me to feel better or at leat m9ve..it sad sorry.but why i.
I know it’s really painful… keep track of your medications on a daily basis and how it’s making you feel. It’s a good way to determine if they are helping or making things worse.
I also suggest you read uplifting blogs to find tips for making your days just a bit better. One day at a time, that’s the only way I get through… and most the time I take one hour/ minute at a time.
I really hope things get better for you. I am so sorry you are in so much pain. I know what you are going through and I can tell you, I do have good days… I am able to live my life and be happy. I wish the same for you.
Kind regards… and a gentle hug.
Tamiko
Your life sounds much like mine. The hardest thing for me is there is no real evidence other than what we feel. People ask, “Is it in your head”? Right, like I can make up this pain. I’m in the middle of a flare. This one has done a number on my memory. So far the worst yet. I couldn’t remember where my 6 year old son was. Once I did remember I began to feel major anxiety because how in the world could I possibly forget where my baby was! I’ve list keys, forgot why I walk into a room, can’t find my phone, got out of my car and shut the door while the car was still running, etc. I need to know what causes Fibromyalgia. I want answers! People donate so much money for cancer research, I get it, cancer kills people. There have been days I understood why people commit suicide. Where is the fibromyalgia research? Yes we live but not a good life. This is hell, a living hell. I look fine so I must feel fine! How do you get a spouse to understand. I must be lazy. I must not want to work. Yes, tell that to my skin you can’t touch, my legs I can’t move and my arm I can’t raise. As I’m sure you can tell, I’m at my wits ends with this Fibromyalgia.
I am so sorry you are in a flare… I hate it, but I realize it is a part of our lives. I don’t know if you have had a chance to take a look – but I have been updating my Tools & Resources page. There is a lot of information there that I have found very useful and I wanted to share with everyone else.
https://myfoggybrain.wordpress.com/awesome-resources/
I would love to know what causes FMS too, I’m not holding my breath on that one, but I think that the medical field is at least starting to believe. It’s come a long way since I was diagnosed.
I am learning that the best way to get anyone to understand is to sit them down and have a conversation about what I experience and that it is CHRONIC which means it is not going away. Even if I am feeling good, that does not mean I don’t feel pain all the time… everyday. This conversation is not always easy, but communication is key.
I hope that you have a better day tomorrow! All we can do is take each minute at a time and be thankful for the good ones. :)
Take care!
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Isn’t it sad that this is how our lives are with fibro…yet half the world thinks we are faking and that there’s no such thing as fibro. Well…we live it every day.
I am a nurse who has been disabled with fibro, chronic fatigue, bursitis, herniated disks, irritable bowel syndrome and sciatica for the last 6 years. I miss work so much…I hate people looking at me like “what the h%^$s wrong with you.
Fibro doesn’t look much different on the outside. It’s the inside that’s the problem. The worst part of fibro. for me is having people ask me what is wrong with me. I figure if I can feel so bad, then why can’t others see how bad I feel??
I try to keep my head up. I try to stay positive…it’s a struggle when your in pain so much of the time.
This article says a lot for us fibromites. Thanks for writing about fibro in it’s honesty.
Chelsea (www.fibromyalgiacareblog.com)
Thank you so much for checking out my blog… I totally agree with you. The most frustrating challenge is the day-to-day answering of “how are you?” and “do you feel better?”. I know people have my best interests at heart, and it would be worse if they didn’t ask… but it’s not very often that I can answer, in truth, saying “I feel GREAT!”. Teaching new folks about my crap, FMS, Depression, ADD – never fun. I always feel like such a loser at the end… and mostly, in part, because of what you are saying – I look physically fine on the outside. I must say though, I may look physically fine… I don’t hardly look “good”. It’s so difficult getting in the shower and dressed. By the time the getting dressed part comes in my routine… I gotta say, it’s not exactly pretty. I wish I had the energy to pretty myself up on a daily basis! Oh my. At least I’m dressed! Could be worse. :)
Take each day, well really, take each moment as it comes and celebrate your wins (whether big or small). That’s the only way to get through the day.
Gentle hugz!
Tamiko
Amen to all that!!! “Gentle Hugs”
Valerie
I am totally with you in each word, Fibromyalgia is a big ghost for me especially at night, when all people having good dreams and me is talking to me, I have nothing to do except one thing it is to pray to God that brings me back to the cases of natural
Yep… that burning the candle at both ends thing my Gran was always on about sure turned out to be correct. Damn it!
It’s good to know we’re not alone when things feel sideways… and that I’m not losing my mind when I have to call the cat that, um… the meowing thing!
Well said. That wall we hit can sometimes come out of nowhere, and BAM, that’s all she wrote. I can only work 20 hrs a week, and even then, I have to ask them to schedule me for no more than 2 days in a row! I’ve come to know what works for me. HAVE to just sit and chill all day one day a week, AT LEAST. And you hit the nail on the head…I’m pretty positive I ran myself into the ground and ended up in fibroland because of it. I’m getting really good at delegating, but some days it just sucks to be me! I used to think of myself as smart, quick thinking, even witty. Now, people look at me funny because I am slow on the comeback, and often misname things. I find myself thinking about life in an assisted living facility at some point, hopefully later rather than sooner. I know for sure I could not live alone if, god forbid, I lost my husband. That in itself is super depressing to me.
Reblogged this on chronicpainsurvivor.
Thank you!