Lived Experience Forum

[Decadian]

Thanks @utopia

I know CRPS is an incredibly painful condition and also fibro causes all sorts of other discomfort and confusion and I feel for your mother

At least with my spine the MRI shows the damage - this is not always the case with other painful conditions and a lot of people get short-shrift which is unfair

It's been great to have the support I get here - and I think that posting my story in the same place will be helpful - right now I am  thinking about seeing the pain specialist and this is making me feel nervous already

And yes - over the last few weeks I have had more pain than usual - I have an idea why but this is a moveable feast and at times I have no idea what causes a flare - but it is really horrible when my specialist says I am in less pain that I say - and I see her for 15 minutes twice a year

Give your mother my best wishes - I think people with fibro really have it tough with more than their condition

Dec

[Decadian]

Thanks for writing @Former-Member

It's like losing something precious when we lose a long post - we it is precious - we don't lose the easy posts - we lose those we put our heart and soul into

But it was wonderful that you wrote it

Dec

[Zoe7]

@Decadian Your son certainly started out in life with so much to deal with. This is where our whole system lets kids down. It has got better in some areas but there still isn't the support and money needed to make a real and lasting difference for these kids across the board.

You did everything (and more) that you could do. Such a wonderful Mum to visit and provide the support you did.

I'd like to be able to say that no-one should be put in those conditions - and your son certainly is one that shouldn't have been - but there are some people in this world that deserve even worse. I don't have once bit of compassion for people who commit certain crimes and if that makes me out to be a bad person I will wear that!

It is really sad that he felt there was no way out but to take his own life but I really do get that. I certainly know how that feels and struggle with it so much myself - especially at the moment.

Know that you did make a difference for him - just as you are now making a difference for me xxx

[Decadian]

Thanks @Zoe7

There really was nothing else my son could do - which is so sad

But you understand - that is important to know - and to know I am making a difference

If one person is helped by my story - then it was worth it

Dec

[utopia]

@Decadian. I haven't read your response to me yet. Just read your response to @Zoe7.
And yes, we should cry for your son & all like him. A mothers tears are the most potent. I understand that. But we all need to cry for your son - as it's the way to stop this history repeating itself.
And I cry for you too @Decadian - because I am a mum. And I don't care what my son may do in the future - my love for him is unconditional - as is yours.
Your son was a beautiful unique child - who unfortunately, did not quite fit this world with all it's rules and lack of compassion.
Some people call children like your son - an Indigo Child - sensitive. They can pick up people's pain. They are sensitive to light and noise and emotions.
I don't see him as a damaged child. I see him as a unique beautiful soul - who was very sensitive to this world & who had a rough start. How truly lucky he was to have you as his mum.
I am crying bucket loads of tears for you both & for other sensitive children and their parents. I am not offering sympathy. Just purely an understanding of how unique and wonderful and complicated your beautiful boy was.
Love and hugs. ♥♥♥♥

[Zoe7]

@Decadian Thankyou for the privilege of sharing this with me. You really are making a huge difference and I understand as far as I can without being in yours or your sons shoes.

and

@utopia beautifully put, and spot on, as always. 

To both of you - I am so grateful that you feel comfortable enough to share parts of yourselves with me. I am also so grateful that you are supporting me at the moment. I don't think you actually know what a difference it really is making. 

[BlueBay]

@Decadian 

Hugs to you my friend xxxooo

I am writing your posts and others replies to you and i have tears for you and for your son. I can't imagine the pain you must be in both of what happened to your son and your physical pain as well.

thanks for sharing Dec, it would have been a tough decision to write your story on here. 

I am stuck for words, i don't know what to write just yet.  But i want you to know that I feel for you so much, sending you my love.  Here for you anytime.

@utopia you always know what to write my friend xxxoo

@Zoe7 you are a beautiful caring person xxoo

Hi @Former-Member I so love your new avatar, just noticed it now. xxoo

[Faith-and-Hope]

❤️💕 @Decadian ....

Here and listening ....

[utopia]

@Former-Member - we all feel for @Decadian and her son. But on a lighter note - I really feel for you. As decadian said - we don't lose our simple replies - it's the ones we put our heart and soul into. And even if we try to re-type it - it's never the same. Bloody frustrating.

[utopia]

@Decadian - yes my mums conditions are different from yours. And often - hidden. But then it sounds like your specialist doesn't get yiur level of pain either.
Pain is hidden - in as much - as no one can see our pain. And some are better at masking pain than others.
I was saying to zoe today - when my mental health isn't good - my tolerance for physical pain is almost zero. And then because I'm in pain - my depression gets worse. It's a viscous cycle.
Can I suggest you 'play up' your pain at your next appointment. Say you fell - or almost fell - and it's made the pain ten times worse.
You shouldn't have to do this if course - but when your specialist - the person in control of your pain meds - isn't listening to you - maybe it's fair to 'play' it up.
I remember your ladt appointment - & the specialist didn't listen to you then.
So - do what you need to.
My sister is worried about my mums increase in pain meds. So am I. But then - I don't feel her pain. And I don't want her to suffer any more than she needs to. So why not let her increase her dose on a bad day.