Learning to live

[Badger]

Is it possible? easier said than done, we all deserve a fair chance, simply existing is not enough. So easy to get caught up in vicious cycles and so hard to break them. It can seem pointless, but in the face of pain and fatigue just wanting a different frame of mind is valuable. Any effort to improve life should be treated with care as it's incredibly unfair and traumatic to indulge negativity. A wise man in a movie once said "Sometimes to heal we must first make peace with the demons that cause us injury'.

 

[Jemima]

Hi Badger,

That is such a poignant quote! It really hits the nail on the head for fibro.

Interrupting the cycle was key for me in getting a handle on my symptoms. I was afraid of the pain and furious at the physical and mental limitations I was experiencing. The stress of feeling that way was in turn re-triggering everything, keeping me stuck in a really bad way. I spent months in bed, desperate over the pain, weak and exhausted. I regularly had blackouts and would have real trouble speaking sometimes because I just couldn't find the words. I really felt like my life was over!

Finally, I found a neuropsychologist by chance - he was actually treating my stepdaughter - who told me I needed to practice "radical acceptance". I had to stop fighting to change what was happening to my body, and stop beating myself up for being unable to fix it - it's OK that I can't overwrite the things that brought me to this point. I also needed to slow down and recognise my pain, sit with it, and embrace awareness that it isn't a threat to me, no matter how unpleasant it may feel. That was really hard, but I lent into his advice. Acceptance on a radical scale...!

By going through this process, taking up practices like pacing and meditation, and chucking a few supplements into the mix, my symptoms are a fraction of what they were. The beast is still with me every day - I have to be really careful not to do too much, and the pain/fog levels do swing up and down, but it's so much better than it was. Most importantly, it isn't triggering me into a high-stress state all the time, which I think is where the magic happens.

So, in answer to your beautifully thoughtful post, I'll say yes - I do believe it's possible! It's not ideal, and it does take work, but the value you describe is well worth pursuing and there is reason to feel hopeful. The way I see it, for every one of us that finds a way through this - no matter how imperfect - there is then a person who can turn around and help the next one through. That makes it pretty powerful mojo

 

[User Requested Deletion 36696]

Is it possible? easier said than done,

Exactly this. Trying to give up the old ways is impossible. I want to be out there, I need to be out there & nothing is going to stop me. Yes I do end up in a mess but you know what i'm still here battling.
And while this way isn't the (best) way or the way we're taught handle this beast, it's the only way at the moment!

 

[Jemima]

Exactly this. Trying to give up the old ways is impossible. I want to be out there, I need to be out there & nothing is going to stop me. Yes I do end up in a mess but you know what i'm still here battling.
And while this way isn't the (best) way or the way we're taught handle this beast, it's the only way at the moment!

I love this!

Surely imperfection is fine, as long as we find ourselves in the process!

 

[User Requested Deletion 36696]

I love this!

Surely imperfection is fine, as long as we find ourselves in the process!

You know what, I feel much better reading that. After someone called me a liar the other day, telling me i can't be that bad if I can get out & exercise etc. I began to doubt whether or not i was 'really ill' & that was compounded by reading some of the stories on here.
Thinking about it i'm quite lucky that i can still do the things I do, granted there's lots of grunting & groaning to go with it but a result is a result!

Yesterday I spent most of the day in bed & i've still woken up feeling like the floor of a taxi, so what was the point in laying around moping when I could've been out there exercising & giving myself something to moan & groan about?

Here I am moaning again. ugh.. this is the bit I hate, I always seem to be moaning about the way i feel to anyone & everyone. I think it's the worst part of this beast.

 

[Jemima]

i've still woken up feeling like the floor of a taxi

That made me smile!!

I think that at times moaning equals a vital pressure recalibration. It's good to self check, but also not to be too self-critical - sometimes venting is a must!

At the moment, I'm really working on trying not to see those "floor of a taxi" type days as a waste. On the one hand, I know that overdoing things can have real repercussions, but on the other, if doing something you love comes with the cost of feeling truly rubbish afterwards the only questions we need to ask are: Was it worth it? And can we avoid a symptom escalation? If the answers yes to both, then I think doing that thing - getting out on your bike or whatever it might be - is justified even if it comes at a cost. Of course, if the answers are different, then it might mean going back to the drawing board. It's a personal choice, and involves honest introspection, but there are no hard and fast rules to dictate how we strike our own balance.

 

[Badger]

@Jemima
It sounds like you went through a nightmare and I'm glad to hear that something positive came of it. Acceptance seems like a difficult step but I've heard there is a relief on the other side. They say much of our suffering comes from how we think and feel about things. It's work in progress but I'm trying to stick to a routine and come to terms with loss. Daily meditation since early 2019 has been worthwhile, pacing is difficult but I try to encourage myself and must be more sensible in future.

@GrumpyGit
It's cruel when people say we're lying and not trying hard enough. Negative attitudes towards sufferers can be one of the worse aspects of Fibro and horribly isolating. Many people are irritable when they have a cold, yet once the cold passes their fine. Just imagine it never going away. Sufferers of Fibro have lost jobs and seen marriages break down.

"Waking up like the floor of a taxi' was a cracker, we certainly need a sense of humour and it points to a strength of character. Fair play to you battling on, I sometimes tell myself progress is progress.

 

[Jemima]

It sounds like you went through a nightmare and I'm glad to hear that something positive came of it. Acceptance seems like a difficult step but I've heard there is a relief on the other side. They say much of our suffering comes from how we think and feel about things. It's work in progress but I'm trying to stick to a routine and come to terms with loss. Daily meditation since early 2019 has been worthwhile, pacing is difficult but I try to encourage myself and must be more sensible in future.

I think a work in progress is fantastic. I have a sneaky suspicion that's as good as it gets - just the "progress" gets a little further along...

Two years of daily meditation is an epic achievement!

I still struggle - particularly mentally - but having made it this far makes me feel hopeful that there's still somewhere to go. Pacing is an intolerable ass, so I feel you on that. I guess it's a balance between trying to do it, and then forgiving ourselves when we screw it up. I'll hit up my dorky 18th century references: "To err is human, to forgive, divine." Alexander Pope

Of course, your quote is infinitely cooler!

 

[Badger]

I think a work in progress is fantastic. I have a sneaky suspicion that's as good as it gets - just the "progress" gets a little further along...

Two years of daily meditation is an epic achievement!

I still struggle - particularly mentally - but having made it this far makes me feel hopeful that there's still somewhere to go. Pacing is an intolerable ass, so I feel you on that. I guess it's a balance between trying to do it, and then forgiving ourselves when we screw it up. I'll hit up my dorky 18th century references: "To err is human, to forgive, divine." Alexander Pope

Of course, your quote is infinitely cooler!

Looking back I'm surprised it's already been two years of practicing meditation, it makes a change sticking to something. There's been some interesting philosophy in the Sam Harris Waking up app.

It's helpful to see there are sufferers who take a positive approach despite the difficulty their living with. A reminder that being open to it and forgiving of ourselves goes towards treating stress and depression.

 

[User Requested Deletion 36696]

Please keep telling yourself 'progress is progress' because it is. No matter how small. The fact that you are still here to tell us your story is testament to that.

Keep fighting the good fight everyone!

 

[Badger]

Please keep telling yourself 'progress is progress' because it is. No matter how small. The fact that you are still here to tell us your story is testament to that.

Keep fighting the good fight everyone!

Much appreciated and a sobering thought. Something to keep in mind during tough times.

 

[CreativeOne]

I started studying Law of Attraction right before I finally got my diagnosis. It has really really helped me feel empowered.

 

[Badger]

That's interesting, it can be hard to imagine invoking the state of mind were we very much feel like we're able to feel differently. It can trip you up when something actually gets though and leaves us feeling differently on a fundamental level. I hope to cultivate something approaching compassionately proactive.

 

[sunkacola]

That's interesting, it can be hard to imagine invoking the state of mind were we very much feel like we're able to feel differently. It can trip you up when something actually gets though and leaves us feeling differently on a fundamental level. I hope to cultivate something approaching compassionately proactive.

I like that phrase, Badger. And my first thought is that to be compassionately proactive with ourselves and our own bodies is the first step in this. Sometimes I find it a lot easier to be compassionate toward another than toward myself. But if I cannot feel true compassion for myself, what I have for others is diminished.