A rock and a hard place

[max_attack00]

Definitely need to vent. It's been over a year since my FM first appeared. Additionally, it's nearly 4 months since I applied for disability, and it's been agonizing waiting. I don't know how much longer I have to wait. We're on a tight budget and I have no way of contributing. It's a frustrating position, especially when some family members believe I will eventually be able to work full-time again in the future.
Is it bad that I doubt that? I had to quit my job, an office job, because I would be in so much pain everyday. I'm trying to lose weight, but that has it's own set of challenges. Like, am I giving up too soon? Or is this part of my acceptance that I cannot be in the place I was before my FM appeared?
My family is supportive, but don't always quite get that FM makes everything much more difficult to do.
I feel like I'm stuck, trapped even. Trapped between expectations and reality, both putting a lot of pressure on me. Part of it definitely comes from my own guilt and frustration. The rest from the belief that I can be "cured".
It's just a really sucky position I'm in and I just needed to spew about it somewhere. Thanks for listening.

 

[Jemima]

Hi Max-Attack,

Spewing can really help sometimes, and for that you're in the right place!

I remember your last message, and I also remember really clearly being where you are now - that awful trapped feeling, and all of the emotions that come with getting your head around something like fibromyalgia. It might sound contradictory, but rather than deciding whether to hold on to hope for a cure or give up, you need to invert that - turn your thinking gently on its head! What I mean by this is that if you have fibromyalgia, then the tough reality is that it's almost certain that you're always going to have fibromyalgia - it's not going to go away. But there is so much that you can do to manage this condition - you might find in time that you can start working again no problem, so long as you pace yourself and find the right balance of what you can handle. I managed to go from bed bound and suffering a lot, to being able to work again with a fraction of the pain - and others do to. The first thing you need to do is try to embrace that fibro is part of your life now, while getting strategic about trying to bring your symptoms into line. I know it can seem futile when you're facing so much, but being 100% dedicated to implementing all those little things that Sunkacola described every day can make a big difference.

Whatever country people are in, it seems to be universal that applying for benefits with fibro is a saga. It must be insanely frustrating, but I suggest you focus on managing your condition in the meantime. You've got nothing to lose, and probably really a lot to gain. It's possible that someone here can give advice on navigating the benefits system where you are - but I'm in Portugal so can't weigh in on that one!

Accepting that we're lumped with fibro is challenging, and will inevitably come with a period of grief. However, it's important to remember that if we get stuck fighting against it all the time, that is going to put us in a really stressed state which is going to trigger all the symptoms in a big way. Try to focus on the idea that as uncomfortable as your pain is, it can't hurt you - it's not actually doing damage, and it will ease with time. If you can unhitch all those strong emotions from the physical sensations and start working with the condition instead of against it, that should help you start to unwind. Like Sunkacola said before, start with that - worrying about things like your weight isn't really helpful now, because putting extra pressure on yourself will just add more stress. Although, if you work on eating healthily and moving daily for the sake of your pain levels, you might find weight loss materialises as a cheeky added bonus!

If you want to, I'd keep explaining to your family. I found some pretty hard-hitting fibromyalgia memes and articles to show my closest folks, to help them get the idea of both what it feels like, and its permanence. You're not being indulgent in wanting them to understand - it's really helpful for keeping relationships strong when there is a health issue like this in the ball court! If they don't get it, it can feel like a wedge between you, and you don't need that. It's wonderful that they are supportive, and I'm sure they'll come to see the whole picture with a little more help.

So there you go, I've chewed your ear off, and you were only venting! I hope, perhaps, that something there is useful. Even if not, know that you're not alone, and you can spew with enthusiasm here anytime

 

[Auriel]

Max_attack00 I understand the frustration your going through, I think we’ve all been there with the wishing we could do more and our energy levels would come back+ our neuropathy would just go and we’d be how we were , accepting and being in the moment, knowing what you can and do is really vital ( I know it’s hard) glad you’ve got your family support( I’ve never had that)There may be a day when you will be able to work again I really don’t know but there’s information on the forum for lifestyle changes/ food changes/ vitamins + medications that might help 100% understanding + support ps I hope you get the outcome your wanting with the disability claim

 

[Auriel]

Hi beautiful, just a quick hi, been a bit rough last few days( why I’m not on as much as I was) hope you ok,

 

[Jemima]

Hi beautiful, just a quick hi, been a bit rough last few days( why I’m not on as much as I was) hope you ok,

I'm starting to suspect that there's a flare in the air this week! Sending massive hugs to you lovely. Stay strong and sassy I hope you feel better soon

 

[Auriel]

Jem’s it’ll take a big bomb to take me out ps ( this has nothing to do with fibro) I found something you might like , if your like me + you like funny + scary there’s a guy on you tube daz games his subscribers keep making him do 1st person walkthrough horror games just for his reactions (which are hilarious)tried playing one once, Never Again x x x

 

[sunkacola]

I'm starting to suspect that there's a flare in the air this week! Sending massive hugs to you lovely. Stay strong and sassy I hope you feel better soon

Well if there isn't something in the air you couldn't prove it by me! I have been more or less out of commission some days since I got back from my road trip. I can't do much, have to be super careful what I do or I will pay dearly for it, and have so little energy that some days all I do is lie on the couch,.....which is not my thing at all!

Good time for practicing acceptance. And for practicing mindfulness as well. both of those things are saving graces for me in times like this. They keep me from getting frustrated, and that is huge because that frustration leads to depression. There is always something you can find to enjoy, to appreciate, no matter what. Even if it is something like the sunset. But there's always something, and for my own sake I grab onto those
things and wring from them every bit of joy I can, just to lift my spirits.

Is it bad that I doubt that? I had to quit my job, an office job, because I would be in so much pain everyday. I'm trying to lose weight, but that has it's own set of challenges. Like, am I giving up too soon? Or is this part of my acceptance that I cannot be in the place I was before my FM appeared?

I feel like I'm stuck, trapped even. Trapped between expectations and reality, both putting a lot of pressure on me. Part of it definitely comes from my own guilt and frustration. The rest from the belief that I can be "cured".

Very important to remember that acceptance is not giving up. Don't ever give up.....but make sure the thing you are not giving up on is worth that effort. Don't give up on finding ways to make your life livable and worthwhile alongside fibro. Those things can be found. but don't make a goal to not give up on, say, doing a certain kind of work again, because that may not be possible. It's OK to doubt that you will work again, Max attack, as long as you also are in a place of true acceptance of that, and are simultaneously doing your best to improve things for yourself.
You are only trapped if you allow yourself to be. If you are consciously working on accepting what is in the moment while doing what you can to manage fibro in the very best way you can, you are not going to feel trapped, because you will know that you are taking action to improve things. Just because there's no Cure doesn't mean it will always stay the same. It will get better if you work at it.

 

[Cindy Wood]

Max I know exactly what you are feeling, Iam in the same boat . I have my disability but they cut it by 400.00 a month and Iam looking at having to go back to work just to make ends meet, and it scares me because I don't know if I am going to be able to tolerate it . Keep fighting for your disability if you don't have a ssc lawyer get one I had to get one but they eventually got me approved. Good luck with everything it will get better.