Lived Experience Forum

[Decadian]

Wednesday afternoon

I have been having a bad day - one thing is seeing the Pain Specialist tomorrow. About a year ago she told me I was not having as much pain as I said I was - ah - I was startled - I asked her how she could tell when she sees me for 15 minutes twice a year.

Apparently my mobility was good - and I was not doing myself a favour my resting the day before and taking medication before I went there - because I do have the pain I say I have.

Since then I have had an MRI and I am seeing my GP twice a week and he knows I am in pain - and also that it varies - and I have been there without any pain - and sometimes the pain is so bad I can hardly stand straight - so I have him to back me up if she starts that again and cuts my medication back severely as she did a year ago

Anyway - I woke up with a humungous headache - and not feeling at all brilliant - I fell into a hole about my son - this time something set me off about how I could not find any help - it just wasn't around all those years ago - it was something on TV - and with a child like my son - already so hurt by his adoption - feeling his birth mother threw him away - this must have really destroyed any self-esteem he might have had

It was how abandoned we both were for the last years of his life - and how my family treated me - yes - I can forgive them - after all they were just as helpless - as was society - it was a terrible place to be - and I had to tell him that once he was in Juvenile Detention I couldn't help him anymore - he had not taken any notice of my warnings that this would happen and that people who break the law have to pay the consequences

Sometimes I have felt that there was more that I could have done - now I know I did as much as possible at the time - the people who kept telling me that I needed to do something about it had no idea how exhaustive much search had been - and continued

So I have this rotten headache - and it is a headache from tensions or stress I am sure - and I am anxious about seeing the pain specialist - but I have my GP and my MRI to back me up this time.

I rang Life Line and talked to them - assuring them if I was on Titanic I would be pulling people out of the lifeboats to save my life - well - maybe my determination to live is that strong - but I laughed when I was finishing

It is more socially acceptable to have a bad spine - I have proof and it can be treated

I felt better then - but still - I have a heavy heart and ask myself that if this happened - that is my son and all this anguish - could be helped in anyway now

Sometimes I think it is so hard for people who have not been there to understand that it would still be difficult -

Decadian

[Appleblossom]

Hi @Decadian

Sorry things are tough painwise, emotionally, and with credibility, at the moment. I know you are a battler in the best sense of the word.  NO the services werent there back then and still not easy to access now. 

Even if you were like me and trying to get the services.  I KNOW that after seeing me mh professionals would see various needs and start implementing things .. but not in time to save my people, not in a way that acknowledged my efforts for my people OR to get help for me or them.

Know what you mean re feeling isolated and alone and in pain.

Keep posting ... we appreciate you here.

Apple

[Former-Member]

Hi @Decadian,

so sorry your pain level is high currently with both back and your headache. It would be a good idea for pain specialist to have contact with your GP.

 I think your last sentence is quite poignant. I think it is hard for those not affected by the grief of the loss of a child to understand it. I know that perhaps for me it's hard to understand because there is no similar feeling I've experienced it in my lifetime but from reading people's experiences and from meeting people affected by this kind of loss I know it to be an ever lasting grief, that never quietens down or goes away but rather just finds some days better than others. I feel for you @Decadian. Wishing you well for your appointment tomorrow. Sending healing vibes💜💐

[Decadian]

Thanks so much @Appleblossom

Wonderful headache - I could not rest when I laid on the bed for a while - I am edgy

But your post is affirming - I remember it took me years to get proof that this was an Aboriginal Death in Custody and how vindicated I was to have the story and statistics changed in the AIC Publications - but both of his stories in those publications are very sad stories

And I thank you also that I am appreciated here - I feel appreciated here. Some people's stories are on-going sadness - sometimes I feel I have passed all the strife there - but it returns to hurt in a big way - aw yes - at least I know what I am telling myself - I wish I could go back into the past with the knowledge I have now - who knows - maybe there have been people in the past who have really known because I have been very lucky to have found helpful people

I know that the Melbourne Juvenile Justice Centre established part of the complex for indigneous children - boys - where they could be treated more to address their different requirements - I could see the outside but not the inside of that complex - I still hope it's there - and that the indigneous children -  so outnumbered in the statisitcs - are receiving help

I know what you mean about having your achievements acknowledged

All these come to pass - this day will pass - my headache will pass and my computer is behaving so badly I will be getting a new one tomorrow - I am going out tomorrow and so what better day to go there. I might put things off but I end up going and doing them when I am ready and tomorrow - let's see

Thanks again

Decadian

[BlueBay]

Hi @Decadian

I'm sorry to read you are struggling  with pain. It's not good.  I really hope your headache goes away, I know what they're like and it's not good.

But I know that you will get through this.

I am thinking of you.  xxxoo

[Decadian]

Thanks @Former-Member

That's a wonderful response

I have noticed that there are some people who have an understanding as you have about the death of a child - and the neverending sorrow of a life cut short - and the theft of the future - of their grandchildren -

Yet my own family called it an "upset" - what!!! what else had happened - No that was right - the death of their grandson was an "upset"

No one was allowed to be upset - what about me - I was in hospital after my car accident - but able to get out of bed - and crying because I was told not to upset other people - by my own mother

Luckily there was a nurse who was a bereaved mother - and she spoke to me for a while -  which help me for the time being

But this I can say honestly - the damage to my shoulder hurts - and two operations later I know I still might have to have a shoulder replacement - but that pain is less than having my son die in that terrible old building where they imprisoned children. My back pain has never been that bad -

Emotional pain is so much worse - and people can see a plaster cast and read xrays - they cannot see or read a broken heart

And there are so many broken hearts here

Decadian

[Decadian]

Thanks @BlueBay

This day will pass - and yes - you know bad headaches

I had my BP taken last week - it was okay - and this is just a headache - not a migraine -

It is wonderful to have so much support here - I am not alone

Decadian

[Former-Member]

Hi @Decadian. I'd like to add my voice to the chorus and let you know I'm thinking of you. I certainly can't claim to know your emotional pain first hand, but as a single mum of a very very wanted child, the thought alone of losing her is unbearable enough. There was a scare a number of years ago, when an MRI unearthed a massive tumour in her little fibia. So massive that the bone had snapped. I was alone and imaging all possibilities for a few days till we could get to a specialist. She was only 11, so I made sure to keep my concerns to myself. That was the worst pain I've been in and I'd have traded it for the pain of giving birth all over again, in an eye blink. In the end, all turned out well. I hope that you're able to get small pockets of peace from time to time and that positive memories can sustain you. To quote you back at you, I wonder which if the "memories that please us the most" is the best for times like this?

Take care. 

[utopia]

@Decadian I'm sorry to hear today is hard for you.
Specialists who only see you for 15 minutes or so & then make such ridiculous statements - frustrates the hell out of me.
Parents try the best they can for their children. I just pray that each year, resources are easier to locate & that our children get the best help you can when they need it.
Thinking of you.

[HellonWheels]

Decadian
That seems ridiculous! Drs, blah