Lived Experience Forum

[BlueBay]

Pls take care of yourself my awesome mum friend @Owlunar 

you mean a lot to me 

[Shaz51]

Yes my forum mum @Owlunar , it would be good to be back at home xoxo

looking towards the future with the  dialysis in the near future 

@BlueBay , @Anastasia , @Emelia8 

[BlueBay]

how are you this morning @Owlunar 

hi @Shaz51 when do yoiu start dialysis?

@Emelia8 @Anastasia how are you both ? 

@Snowie how are you?

love and hugs to yoiu all xxxxxooooo

[Snowie]

@BlueBay 💗💗

Love and hugs back to you hon 💜💜💜

[Owlunar]

@Snowie @BlueBay @Shaz51 @Anastasia 

I am bad at tagging - my shoulder is making typing harder

My daughter has totally pissed me off. She was having a hissy-fit - she thinks she has her reasons but she is totally out of line.

I kept my voice down - I told her a couple of truths about my life - I know she has a bad spine - I know - of course - I have the same. Sure I am not facing a spinal fusion - yet - it might still happen but hopefully I will make it to my end without further intervention

I started to write what she said - but thought - why? Who wants to read that? I don't want to write it?

I am so disappointed in her. I asked her to do a small thing that I could have done for someone else regardless of my pain - I don't understand her issue - it was a phone call - 

I can get angry - I get proactive when I am angry. I do things. I write letters, send emails now. I have demonstated. I have changed things in the office and other parts of my life in the past when it was necessary. I am assertive.

It was hard to hear her have so much so wrong. It's impossible for her to undercut my confidence or awareness of myself - I have had time enough to examine myself thoroughly.

And I have been tested

My heart feels broken. I told her I would let be for as long as she needed and I will not reach back until she does. She has so often got upset about a trivial matter - but that's her

Aw - that was a bad conversation but I said the right stuff which probably made it harder for her

Shit - I love her and I would do anything for her

Dec

Feeling blue

[Emelia8]

Hello @Owlunar  ... makes me sad to see and hear you 'feeling blue'.  Sorry to hear of the disagreement with your daughter.  I cannot understand why she would refuse to make a phone call for you.  Having a crook spine is no excuse for refusal to make the call, nor is it an excuse for a hissy fit.

Glad that the new meds you have been put on while in hospital are having a positive effect for you.  Hopefully it lasts a long time.  I'm sorry to hear that your daughter is likely to need spinal fusion surgery.  I actually saw an orthopaedic specialist myself some 10 days ago.  He recommends I also have a discectomy and a spinal fusion.  I havent agreed yet, but will see him again in January and will give him an answer then.  I may just elect for the discectomy to elleviate the severe nerve pain, and then see what happens in subsequent years.  I could still need a fusion later.  Its all pretty daunting I have to say ... major surgery and high risk.  I hope you do not need to have it done.

You are one strong lady owl @Owlunar  ... you know yourself very well, and its so nice to see.  Still I can see that your heart is breaking over this disagreement with your daughter.  I so hope she reaches out to you very soon and puts things right. Perhaps explain also her unreasonable reaction to your simple request.

Love and hugs to you Dec.

Emelia 💕🤗

[Owlunar]

@Emelia8 

Hi Em 

Thanks for that wonderfully understanding post -  you are right - there was no need for a hissy fit to make one simple phone call. Something had gone wrong with my diet at the hospital and I was upset and so weak - the whole deal was traumatic though the medical care was the best

So - my daughter thinks it unnecessary to complain about what happened - I think it's essential - 

However - the email I have sent did not had a suffient response and I have been on the phone to get the right email address from  several phone numbers - people are helpful. I can't see my daughter navigating a problem like this one but it's normal for me. I finally got the right address and so far my email hasn't bounced

My daughter doesn't see the need for such activity - I had a couple of long conversations at Life Line and know it's a hard thing to really stand up for our own rights and the rights of other people. I have done it before and I will do it again if necessary - as I am atm. Righteous anger is a good thing - I would not like anyone else to suffer as I did.

I am sorry you are facing spinal surgery. I know how it feels to have a shot spine which is what happened to me and they could not operate back in the 90s - now they can but I am too old - really - but it might happen. The world is not an easy place.

You are so alone in the world too - I am used to it - I separated from my husband at the end of 1989 - and that was a relief. It wasn't a bad marriage - but sad. My husband was a remote, silent, morose man - the death of our son drove him deeper into himself. I know I never knew him. Just is life

It's painful for me to type and I did a long email to Ramsay Health this morning - that organisation owns hospital world wide and insists on the highest of health care - I am really glad I have done what I have done

And my daughter - well - after a lot of name-calling from her end I was very quiet and gave her the last world telling her - "I am ending this conversation. You can get back to me when you are ready" - there is a lot of power in giving someone the last word - and it must be totally frustrating for the other person - esp when I kept calm though the whole deal

But - I was stewing an apple for my unhappy tummy and forgot it was on the stove - I thought my new saucepan had the last rites - it washed out okay - I can cook the other apple today

Thanks again Em

Dec

[Snowie]

@Owlunar 💗

[Owlunar]

@Snowie @Emelia8 @BlueBay @Shaz51 @Zoe7 

Silence from my daughter from 3 days - she is entitled - she got a rare serve of tough love from me and she doesn't have to like it

She was totally out of line - after all - what she thinks about me is not my business and I would rather not know. She can't touch my self-esteem - I still feel okay about myself

I would love to tell her that she was out of line and that I will not enable that behaviour in the future - she has had her moments in the past - she tends to give me a psychological kick in the guts when I am vulnerable - like after my parents died - perhaps she does't like it and gets scared when I am vulnerable. Stiff cheddar for her - I have won this health battle though it's taking me a long time to recover

I have had a lot of feedback and encouraged by my success in one of the hospitals I reported in my email to Ramsay Care - the other hospital will take longer but I have had an encouraging email about that. It's worth making relevant complaint. Ramsay Health as a vast website that is hard to navigate but with a lot of phonecalls I found the right email address for Australia. I can go higher if I need to.

I feel empowered - it is worth doing - I have known this for all of my adult life

Thanks everyone - last week was so hard I can't write here about it - this week - tough - but I started eating some chicken fillets I had ordered with other food on-line. I cut it into portions and when it was partly defrosted I cut it into thin slices and sauted it in it's own juices. I forgot to take the last piece out of my freezer last night so - um yeah - I will have toast for brekky. 

Thanks again - I would be here more often but typing with my left arm isn't easy - I will be back more often

Dec

[Emelia8]

You have done well @Owlunar .  Its thanks to people like yourself who have the courage and perseverence to keep our systems properly scrutinised and made accountable, which make our health care better than it otherwise would be.

Its so lovely to have you here again, but please do not do more than you can.  Dont want you going back wards in your recovery.

Thank you also for your response on my thread this morning.  Last night was a really dreadful night for me.  Its really hard to be positive when there is considerable long term pain and a complete lack of sleep on top of that.  I will respond there properly in due course.

Sending a gentle hug to you and lots of love, because I know how much you are hurting regarding your daughter.

Emelia