Help feel like i cant keep going

[nicky117]

Can anyone help feel so tired and in pain and useless keep trying to tell my husband and my daughter. feel guilty if don't feel like coming near my husband feel guilty not being able to take my daughter places she's 11 useless mam and wife fibo has changed me so much don't feel like me any more anyone feel like this. this is my first post and I know I'm moaning need to talk about it x

 

[sunkacola]

Hi nicky, and don't worry about your moaning.........we all need to do that from time to time! We even have a whole section of the forum just for moaning and complaining! But you can do it anywhere, it's OK with us.

First, I want to address your feelings of uselessness or guilty. A human being's worth is not dependent on how much they can do physically. (I suggest you write that on a piece of paper and put it somewhere that you can see every day)

How good a mother someone is, is not dependent on how much they can do physically. If you show your daughter that it is possible to have a healthy, happy, thriving and useful life even when you are debilitated or disabled physically, you will be teaching her one of the most valuable lessons she could possibly learn. It will give her understanding and compassion for the hundreds of thousands of people, many of whom she will meet in her life, who have physical limitations. And she will also learn that her own worth as a person is not dependent on what she can accomplish physically. Being honest, living with integrity, being kind and thoughtful and caring and courageous are all far more important qualities to have, and if you think about it you will agree.

As for your family understanding...........forget it, they won't. Because you cannot truly understand what you have not experienced. Ask only of them that they believe you when you say you feel a certain way, or that you truly want to do this thing but cannot manage it right now. Find ways to show your daughter and husband how much you love them that don't involve your physically having to participate in things you cannot manage. Maybe even seek family counselling for this, if that's something you can manage.

there's a whole thread here somewhere all about how to talk to others about fibro. Maybe someone can link to it for you.

Finally, there are many things you can do for yourself that will help. I have written a post about this. Read and try some things and see if something there is useful to you.
And stick around. We are here to support you.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[sweetkamie20]

Hi Nicky. I wish we could all give you a hug right now how you are feeling is something I can relate to and I’m here to tell you there are some things that you can do which will help you manage fibro. Sunkacolas post was amazingly helpful to me. I have 2 other things that can help ease the emotional pain.

I’ve been assessing children and families for about a decade - I estimate around 500 children and their parents and foster parents and families etc. multiple times each. My job was figuring out what a child needs and reporting it to a judge.

Apparently I did a pretty good job - 7 awards (one for the state I live in) and lots of accolades from officials. I only share this to encourage you to trust me when I say what your kid really needs from you is something you CAN give - it’s far
more valuable than doing things, giving things, going places, etc.

Let’s talk about the big picture for kids: our job is to provide them with the tool they need to be happy/content. That tool is perspective. If you teach your kid to have a good perspective then you will have set them up to enjoy the future no matter which circumstances comes their way. We’ve all known of people with everything one could hope and yet aren’t happy and we have all known of paralyzed people 100 times more joyful than others. And there’s just one explanation - perspective.

The kids I am happiest for are the kids who have a perspective that will carry them through life’s ups and downs. You can give that to your child.

I know parents don’t want to add burdens to their kids but please don’t consider your health one of those things to hide from your kid. Imagine how your kid will explain to themself why you do or don’t do some things. Wouldn’t it be kinder to give an explanation?

Yes, you don’t want to lean on your kid emotionally so explain when you’re emotionally able to be reassuring. Let your kid know that it’s not going to kill you but there will be times when you need to rest and _______ . And don’t feel bad asking your 11 year old for some help. Praising them and thanking them for helping you because you don’t feel well will reinforce some positive incentives.

What I’ve seen this do in kids is give them a sense of being needed and recognizing their ability to ease someone else’s discomfort. The children these days where I live could stand a big dose of this - they are so entitled and self-absorbed.

Lean on us or your support system emotionally. As for getting past the guilt I finally realized that if my family understood the amount of pain they were expecting me to go through just so I could attend a birthday party they would tell me to stay home and rest. From another perspective: what if you had a friend or husband going through fibro - how would you handle them? That’s exactly how you deserve to be treated.

Now I know this won’t stop people from having expectations of you - people still do it to me sometimes. Then I remind them again that I’ve been in so much pain I understand why people wish they would die. When I explained that to my husband it really got his attention and he started taking me seriously.

Oh and the one thing that caused me to stop feeling that level of pain is that I slowed down - way down. I sometimes do too much and cause a flare which can last weeks BUT the sooner I slow down the sooner the flare ends. For me it’s the only way.

Welcome to the forum. Sorry you are going through so much. From time to time we share memes on the Touch of Humor thread.

 

[sunkacola]

@sweetkamie20 , thank you for writing that. You know so much more about kids and what is good for them than I do. I know the gist of it but not the way you know it.

If you have the energy and time to do it some time, maybe you could even write a whole information post about this that we could pin to the forum. It wouldn't have to be long, just saying what you say here, basically. So many mothers come here feeling exactly the way that @nicky117 is expressing that she feels, and if we could refer them to a post written by someone who really knows what she is talking about with regard to children, maybe that would help. No pressure.....don't do it if you don't really want to, it's only an idea.

Thanks for such a good response to someone who really deserves some support.

 

[sweetkamie20]

I was thinking yours was so touching (I hadn’t read it until after I wrote mine) and I really didn’t need to say anything after you . I know it’s reassuring when someone knows you’ve got experience in the field and I’d be happy to share what I know from that perspective. Could you copy and post your response there also?

 

[sunkacola]

I was thinking yours was so touching (I hadn’t read it until after I wrote mine) and I really didn’t need to say anything after you . I know it’s reassuring when someone knows you’ve got experience in the field and I’d be happy to share what I know from that perspective. Could you copy and post your response there also?

Sure.

 

[JayCS]

Hi Nicky - such a frequent problem. Most of us will be able to relate to such feelings!
Since all relationships are always a question of balance of giving and taking.
With humans especially, but also with animals.
In the first months of my fibro full flare first one of our guinea pigs needed feeding up for 2-3 months, but then died, then suddenly the other - wanted to join the first. Since my wife wasn't up to feeding several times a night, I did it, "since I was awake anyway" - of course this will have contributed massively to the fibro. And here I am again feeding a guinea pig about once a day for a month now, my wife manages the rest and little Harley is strong and trying to chew what he can on his own. For her it's easy and relaxing, for me it was highly tensing, made my blood pressure shoot up, now I'm finding ways to relax (best as always for me by multi-tasking).
Luckily my kid is long old enough not to need me any more (but was also very needy, actually). But the kid's kids only get a few minutes of me every month, so I've learnt to make those few minutes into the most extreme quality time I can, be a sort of "popstar", who is there for a minute and then disappears, but while there, looking deeply into their eyes, taking their hands, focusing on nothing else, listening closely, giving them challenges, relating honestly and directly to their challenges, joking and also taking them seriously, and making sure they can take me seriously and authentically. When I'm slow, they "know" why, when I'm closing my eyes or need to retire physically or lie down a bit away, they "know" why, when I'm brave, they "know" why, when I need help, they help - and when I'm fast and all there and can help them for a few minutes, they're thrilled to bits.

So part of it is putting the most needy one first. Who is that?
When we look thru our eyes we see the others, when we look with our heart we feel our love for the others.
But if we try to look and think properly from outside ourselves, from the others' perspective, honestly - we, with this condition are always needy, and usually the most needy, and so need to be put first by them and by us.
But it's not easy to do it properly, as most of our symptoms seem invisible to ourselves as well as others, and even those bits that aren't we tend to hide, instead of showing it.

It may appear foremost as if others don't understand us, but I think even if it does, underlying that a lot of it is us not understanding ourselves.
How we can get people to understand us is something we talk a lot about,
so here's the thread @sunkacola pointed out: How to Understand Someone With Chronic Pain

When we've understood the basics ourselves we can start to take ourselves seriously, and then start to tell/show others.
And whilst telling them we continue understanding.

So for me: a lot of my own understanding comes from trying to describe to people what this is, what it feels like, what it does to me. So I actually never tire of telling people who want to know (or who I pay to listen to me), whether I realize people want it in a word, in a nutshell or the longer version, because all of this has greatly helped me progress with it. That's perhaps cos in my case it's been changing a lot all the time since I've had it, every month, in the last few months every week.