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12/04/2008 07:33 AM

Fibro & it's effects...venting time

coolmamma
coolmamma  
Posts: 574
Member

I have been putting off writing for a few days hoping that my feelings would change. However, I am in my usual fibro flare lately and I hate it! Angry I can't stand the way it effects my life.

My dh is tired of hearing me talk about the pain so now I feel like I am on an island by myself. Even one of my best friends has challenged me to not talk about the pain unless it is above a 6. Angry No, neither one knows what it's like to have chronic pain EVERY day. I tried talking to my dh to get an idea of when he wants me to tell him about the pain but didn't get very far. Normally he is very helpful and supportive but I think the stress of his job is effecting him. Sad We did talk about our finances and I am going to have to go back to work at least part-time as well. When I told him that I talked to my doc for her opinion on what type of work would be best (child care or working PT out of the house) he looked really frustrated and shut down on me. I told him the doc said in her opinion it would be best if I worked out of the house so I can have the house to rest when I don't feel well. He looked at me like I was crazy & making things up. When he does that I end up feeling like I am crazy and selfish for trying to take care of myself.

I try to push myself a little every day to get some things done but then end up hurting worse as a result. I take more pain meds to help but they cause me to get really fatigued & then I have to rest more. It's such a vicious cycle and I am so frustrated lately. Angry So, what's a girl to do? Most days lately I just want to crawl out of my skin and find a new body to live in. Wouldn't that be nice? Silly

I do have pockets of joy that I have been trying to focus on. Things like snuggling with my puppy, reading with my girls, taking a loooonnnggggg HOT shower after everyone else is out of the house...these are a few of my favorite things! It's just too bad that these moment of joy don't last.

I feel like I am stuck in a rut and don't know how to get out of it. I do know that I am fortunate enough to be able to still care for myself and that I have a family who loves me but somehow I still feel like I am on my own island. Sad

It's good for me to get this all out. I know that half the battle is talking things out, so I appreciate all of you who are here to support me. I do have a psych that I have been seeing but he is going to be moving and I have to change docs next month. UGH! I hate starting over!

Needless to say, today is not a good day for me. I hope I am not bringing anyone down. I am playing Christmas music now to try to cheer myself up.

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12/04/2008 07:44 AM
amommy02
amommy02  
Posts: 1891
Senior Member

Keep focusing on those little joys. They are all that keeps me from giving up. I know what you mean about feeling like you're on an island. I've explained it like this before:

I feel like I've fallen down a well. I keep calling for help but when someone comes and sees how hard it will be to help me they walk away and pretend they didn't hear me. I keep trying to climb out and have almost made it a time or two but just as I reach the top I fall back down again. Each time I fall it gets harder and harder to get up and start climbing again because I know I'll eventually fall again. But if I sit here and wait for help to come I'll just sit down here and die. So with no hope of ever getting out of here I just climb anyway.


12/04/2008 08:03 AM
coolmamma
coolmamma  
Posts: 574
Member

Thanks for understanding. Climbing the well explains it perfectly. Maybe if we keep helping each other we will make it out of the well. Wink

12/04/2008 08:26 AM
abby36
abby36Posts: 111
Member

coolmama-i hope that you're flare is starting to calm down! I, too, have really supportive family and friends. but sometimes i don't think they get it.

i got a card from my aunt today. she means well, but only wants to hear good news. her card said that she hoped i was getting better every day.

then this morning i talked to one of my oldest and dearest friends. i guess i need to explain it to her better because her first question was are you feeling better. well yes, better than yesterday, but never know if it's worse than tomorrow.

i think my answer was that this will always be with me and some days are better than others but that yes, today i'm better than i've been for the last few days.

something that helped my family was me giving them stuff to read. we're all very cerebral in my family and can't listen either so reading is often the best way to get to them.

hope you find a job you can do that won't wear you out. in-home child care seems really hard. maybe you could be an ebay seller or something where you can sit for most of the day!

good luck!


12/04/2008 02:04 PM
booklady14
booklady14  
Posts: 1188
VIP Member
I'm an Advocate

DITTLE, Coolmama.

I could't have said it better. I've been like that for a couple of weeks. I just hate the way that this justs totally takes over your life. It's not like we can take a few aspirins and feel better in the morning.

Since the medical world is trying to discover what causes fibro, maybe then when can get well. And I try not to be negative, but like my husband and I were talking about last night. How do you plan for your future. Should you just keep pushing and pushing for a good day, but you never know when that day is coming.

Sorry I didn't mean to add to your depression, but you said it so well, so I put my 2 cents worth in.

ks...............Wink


12/04/2008 02:08 PM
Auntie3285
Auntie3285  
Posts: 9182
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{{{coolmama}}} {{{amommy02}}} {{{abby}}}

Reading your above posts could almost be ME also ...with a few exceptions.

I m probably older than any/either of you but the stories are pretty much the same when it comes to husbands.

Mine either doesn t understand (or chooses not to) Fibro and what it does to our bodies. Over the years, when I have had ""something wrong"", it was always ""fixable"" (pregnancies, gall bladder surgery, hysterectomy etc.)and things got better. We all know Fibro doesn t get better.

I DO still work full-time and on my feet up to 10 hours per day. (He is retired...does his own things all day...takes a nap when he wants etc.) I still keep up the house, cook the meals, do the dishes etc.

At this point in time, I m thinking I m going to have to really get down in that well that amommy mentioned and have to drag myself out before he is going to realize how bad Fibro can be.

Anyway, sorry this is so long...I didn t intend it to be but , Girls, those of you that have understanding spouses and SOs, cherish them. They are priceless at this point in time.


12/04/2008 03:02 PM
coolmamma
coolmamma  
Posts: 574
Member

Booklady, you didn't add to my depression at all. In fact, knowing that I am not on the island by myself is reassuring. I just hope that the island that is at the bottom of the well is big enough to hold all of us that are there. Silly

Auntie, I'm thinking that maybe your dh needs to spend some time in the well to know what we go thru. Maybe then he would know how lucky he is to have you and all that you do despite the pain of fibro. Just listening to all that you do makes me need a nap. Wink I am afraid that if I worked that long then did everything at home that I would be out for days due to pain & exhaustion.

Sometimes I think I need to whack my dh along side of the head so he can see how the fibro effects me. Blink Whistling He really is a keeper most of the time but other times, well, let's just say I can hear the crickets chirping when he is trying to understand the pain. Wassat

Meanwhile, the pain is taking over, I am getting cranky and dh is going to know what's for dinner when he gets home. Angry I wish I had some pixie dust to whip up some yummy dinner. Wink


12/04/2008 09:22 PM
jenn36
jenn36  
Posts: 899
Member

Coolmama you're not bringing anyone down. You're stating how you feel, which is more then ok. Plus as an added bonus, we all completely understand where you're coming from. It is easy for people that do not have fibro, to tell us how we should be handeling things. And if "friends" don't want or can't get it, TOO BAD!! We have each other here. So no one is ever alone.

Jenn


12/04/2008 09:34 PM
HAMPTON7026
HAMPTON7026  
Posts: 1366
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I'm an Advocate

Ditto!! I agree with jenn!!

12/04/2008 09:49 PM
ALCSS2008

I have always expressed my feelings as falling down a black hole that has no bottom. You hang on to anything you can to keep from falling further, but you just keep sinking. Do any of you feel that this holidays make it all worse? The added expectations, family visits and finanacial hardships.

Coolmama perfectly described the way I feel. An island is something I never thought about. But that is it. It seems that no matter how much people who don't have fibro claim to know and understand how I feel, I am alone. I can feel alone in a room full of people. It is like I talk and carry on with my life, but I am only going through the paces. Lately I have felt like I am on the outside looking in. Things seem to go on without me. Does this make any sense?

As for bringing me down with our conversations. I don't know what I would do if I didn't have somewhere to freely express myself without ridicule or self-doubt. I am thankful for my friends here and that I feel supported.

Sandi

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