New here

[shaanny]

Hi everyone, I'm sian (pronounced shan). I'm 54 years old, and After a very long and very painful nearly 4 years I've been diagnosed before Christmas 2023 with fibromyalgia, also a hiatus hernia as well as menopause,I'm a community carer as well as caring for my parents, and used to be a very active grandmother. I'vea million questions, Gripes, concerns and whinges. So I'm going to read some of the threads to see if they help to navigate me through. I've been on a mixture of antidepressants this last year, as I've just gotten worse (I did think I would eventually go). Last year I was off work at least 50%, I haven't 'claimed' any benefits until now as I'm going into week 5 of being off sick, so I've finally had to put sick notes in. As a carer I have cared for people with fibromyalgia, quite a few in wheelchairs!! This has frightened me. I'm fighting to keep working, but I've days or weeks as it's turning out of being unable to drive as raising my arms is painful, my feet feel like swollen hot pillows, and my head hurts, as well as not being able to focus/concentrate and sometimes feels as if the road moved, that's without every joint achievement, awful pinching sensation on ribs. There's more but I think this is enough for an introduction. Thanks for reading and hopefully guidance as I'm feeling really bitter at the moment

 

[BlueBells]

Hi @shaanny

my arms / hands are about to crash, but I've just sent a few welcomes to newbies, as I know what it feels like when no answer appears.

We are all over the world, so people come and go at odd hours.

I'm sure you will like it here, Welcome

 

[shaanny]

Hi @BlueBells
thank you .

 

[Auriel]

Hi shaanny, welcome to the forum! ️, I Was a carer for a long time (family member AND work) it's challenging, nobody mentioned how lonely you can feel sometimes, it is amazing that you're giving your time up to care for your parents, but please try and find some reprieve as well (mine came too little too late), someone started another thread in a similar situation, there are support groups for carer's (and also places for the caree's to go "if" they want to for a few hours) but please have a little break now and again

 

[sunkacola]

Greetings, @shaanny , and welcome to the forum.
I wrote an advice post for newcomers.....you might want to check it out and see if anything there is useful to you.
Ask any questions you have (they are never dumb questions), and we will do what we can to help.

The first thing I want to suggest is that you stop looking at people in wheelchairs and letting it freak you out. That is not your future, just because you have fibromyalgia.
And allowing yourself to go around anxious and frightened is guaranteed to make your fibro symptoms worse, because fibro is greatly exacerbated by stress.
Another thing is that if the medications you are taking are not helping you, don't take them. (Consult your doctor, of course, don't just stop taking them in case that's a bad idea).
Some antidepressants, especially if you are taking more than one, can make things worse rather than better. Not saying that's your situation, of course, just that it could be.

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

 

[shaanny]

Thank you @Auriel and @sunkacola
Noted and I agree, and I'm taking a break, I've put myself on the sick and have sick notes, I'm also re contacting doctor and asking to be referred to pain clinic to gwt the right mexication for me, I just feel guilty as there's a massive shortage of carers everywhere.

 

[sunkacola]

I understand your feeling guilty.
But,
and you know this of course,
you cannot really give good care to others if you, yourself, are too depleted.

So, now maybe it's time for you to devote to taking care of yourself. It's not selfish, but rather just doing what needs to be done, the same as you have always just done what needed to be done for those for whom you have cared.

 

[shaanny]

you cannot really give good care to others if you, yourself, are too depleted.

Exactly, I handle/administer medications. I keep messing my own up, or forgetting whether I've taken them or not. I can't afford to make make mistakes with other people's

 

[Auriel]

you cannot really give good care to others if you, yourself, are too depleted.

So true, so true

 

[BlueBells]

@shaanny

I can't afford to make make mistakes with other people's

It always puzzles me how we think like this. We know we must not mess up with other people, family, pets....but we don't seem to have the same level of conscientiousness in relation to self-care and self-nurture.

 

[Auriel]

That's soooo true @BlueBells (I used to be like that, really self sacrificing, everyone's needs/wants above mine, fear of doing something wrong ) I think a lot of it is programming and training in childhood

 

[BlueBells]

I think a lot of it is programming and training in childhood

Yes, @Auriel

My counsellor believes that and also being so soft-natured, I'm very easily hoodwinked into the idea that I should be responsible for everything.

One counsellor said I'm a 'peace keeper', not a 'peace maker'. The difference is that a peace maker helps settle the situation, but the peace keeper takes all the troubles on themselves so that life is 'peaceful' for others.

Why is it many of us take half a lifetime or more to learn this?

 

[sunkacola]

Why is it many of us take half a lifetime or more to learn this?

Don't feel bad, Bluebells. At least once or twice a year I am utterly shocked to discover that there is something really quite important, and often rather obvious, that I have somehow not managed to learn yet.
It's always good to learn it, of course. That's the good part.
But I am always amazed and a bit ashamed and think, "How is it possible I have been alive this long and not known that?"

 

[Auriel]

No @BlueBells you're not responsible for everyone, what's happened is you've soaked all the negative from the situations and made things better for other people, bit when it comes to people like us we end up harbouring it all while everyone else is momentarily ok, it takes a long time to understand it because of our nature we find it hard to believe how toxic manipulative and high conflict some people can be

 

[JayCS]

Why is it many of us take half a lifetime or more to learn this?

Very understandable, and (if necessary) very forgivable!: The past 3 years on the forums have convinced me that even nowadays it's still the case that most people are scared of looking at and talking about our psyche, cos they see mental problems as weakness and a shame. It's a pretty complex matter, so there are many misunderstandings including this. Such a pity. And a shame. Cos if they were actually "strong" they wouldn't be afraid to "admit".

and also being so soft-natured, I'm very easily hoodwinked into the idea that I should be responsible for everything.

Yep, I was going to say that it's not just upbringing, it's also partly our personality, our nature.
So maybe it's not just being hoodwinked, it's our own inclination that people can take advantage of.
In my case I "love to help", it's a big aim in my life. The challenge was just to learn to help myself in time, too.
Others that know me seem to say I stop helping others too late, but I'm content with that.
I can help inside my limits, there are many things I'm not responsible for, and sometimes I have to suppress an urge to help when it's just not worth it.

One counsellor said I'm a 'peace keeper', not a 'peace maker'. The difference is that a peace maker helps settle the situation, but the peace keeper takes all the troubles on themselves so that life is 'peaceful' for others.

I like that black and white way of comparing. But I think many peace keepers also try to be peace makers, it's usually not just either or. The message is definitely to try to try and learn to be mainly peace makers. And when we see a necessity to be peace keepers (e.g. to not pour oil on any fires in some situations), to try to keep our own peace at the same time. Things need to stay in proportion.

Serenity prayer type we would try to make peace where we are able to without overtaxing ourselves, if not possible then to keep peace for others as well as for ourselves and to radically accept what is left, whilst trying to at least put the message across that this is what we are doing, and that this is not complete fair peace.

Also important neither to let us be victimized nor to allow ourselves to feel like a victim a lot of the time, or even talk that up to feel we're a martyr that takes all the suffering of the world upon themselves. In all those cases it's good to take corrective action on our attitude/condition, which may include getting help to do so. It's a strength and a competence to ask for help.

We're not being fair to ourselves if we see any of this as weakness though.

OK, what I've written feels far from perfect, but in the above vein I'll let it go all the same... ¯\_(ツ)_/¯