Lived Experience Forum

[eth]

Hi @Sophia1 I've been thinking of you.  Great to hear your news about benign tumor and about contact from your son.  Best wishes for your convalescence to be better than expected.  All strength to you.  

[Sophia1]

hello all

a brief response...get very drained quickly..

had 30 minute session in pool...lovely...

wish that I could move into the pool and have short visits out on dry land! Rehab needs to be reversed for me..

my emotions have been all over the place...lots of crying..frustration and just not wanting to be around..

hard when I get so low thatI am here merely for not hurting others...

then I have revelations of well I had that surgery..

well sister and mum were horrible on day of admittance to hospital....have spoken to sister..told her moving forward..no talk of what has gone..unconditional love..mum not wanting contact...she is struggling..not sure what sister has said to her..

families!

take care all..

will follow up everyone when pain reduces and blasted emotions settle..

have only slept about 2nights in last two months....I feel as though I want to scream...

I felt dissociated before hospital ....then in shocked state...depression...crying....

back at home felt as though I was trapped under ice..trying to push out..shouting not knowing where. I am.. Nobody hearing me..

feel lost...feel as though I am lost within me...strange..have not felt this way before..

have psyche session tomorrow

goodnight

[Faith-and-Hope]

Morning @Sophia1 ......

Maybe it would help to show the psych this post ..... (copied and pasted into a Word document and print ed out) .... maybe ?

It could be a great starting point.

Hope it all goes well for you today after being so sucky for a while now.

💐💜💕

[outlander]

Morning @Sophia i like F&Hs suggestion of printing or writing out this post. It says alot about how you are.

I hope it goes well today and you get some moments of peace. Gentle hugs 😘💕

[Sophia1]

Thank you

yes spoke about strange feelings and range of emootions

he said that I should have stayed in operation hospital longer..was supposed to be there 4-5days..discharged after day 3 because I was mobile and showering self..

also tears , emotions very common especially after major operations..

said need to get back into routine of therapy sessions..

had visitors today..I only said hello and thanked them for coming then lay down...not ready 

other friend rang..said better for me to see her in a couple of weeks...she understood..

am in more pain today than yesterday..

[Former-Member]

Hi @Sophia1 - im glad to hear that you are doing what you need, i.e. asking people to wait, laying down when you need and just listening to your body. Glad your friend understood as well! Do you have a nurse visiting or frequent check ins with discharging hospital who you can talk to about pain ? <br>Glad you are here

[Sophia1]

hello @Former-Member

Thank you for your response...

I have a follow up review with my neurosurgeon who performed the operation in the first week of may...

I requested referral to the rehabilitation  hospital after leaving hospital where had operation....

rehab hospital had indoor pool where I was able to do exercises designed by a physiotherapist appointed to me...2 x 40 minute sessions during monday to friday then 1 x 40 minute session saturday morning...

I booked an appoitment with physiotherapist whom I saw before hospital re sciatic nerve pain (not apparent now) possibly pain killers masking...pool would have helped also..

have also booked pool 3 times per week for 30 minute sessions...am having a special session this afternoon with physiotherapist to learn more exercises using their equipment..

also see gp whom I haven't seen before,,,mine on holidays with her children... before pool to check my waterproof bandage and get confirmation re whether to change after every pool session or not...

very frustrating in hospital differing opinions depending on which nurse I asked....

not sure if I can report to a nurse to check...dont think they will visit...

told in hospital to come off pain killers after 5 days home....will be just over three and a half weeks after operation ! physiotherapist told me to ignore there is a bit of ho hum at the moment about older people being over medicated....

there were some incredible nurses in that rehab hospital...they clearly wanted to care for patients...two nurses told me that they had depression and another told me that she helped her boyfriend through depression for about 18 months.. They were incredible.

i told the one nurse that she would be fabulous for mental health...she said she had thought about it...I mentioned that she might not be able to distance herself and absorb too much suffering of others as I do...

We are keeping in touch...she is a young single mum in her thirties who has done it tough ...now has a new partner not that long ago...she also has been hurt and shunned by her family....

Digressing as usual...

I will speak to the gp about pain management....if not happy with his response ...I will discuss it with my psychotherapist who prescribes my other mediction..

how are things with you at the moment @Former-Member  you have certainly endured much since I first met you on here....I hope that you are discovering more about yourself on your journey and learning to accept and like the different sides of who you are...

again thank you for responding and showing that you care....

[Former-Member]

Hi again @Sophia1
Im glad that the pool viists have been set up for you and glad that those times will be soothing and useful, though i get how frustrating all the idfferent opinions can be about what to do from nurses/drs alike. Sometimes i just want someone to know the right way to go with things... T
Im glad that you were able to get to know your nurses so well and see so much good and positive in their care and personal selves. Being a single working mum is not easy and im glad that she has compassiion i hope htat you can both be a support to each other. life is incredibly tough at times.. but i think you're tougher 🙂

[Appleblossom]

@Sophia1 

I am sorry that the pain was worse post op. It certainly was a serious operation. The doctors often forget to tell us about the pain bit. It can be a big issue the way the push people to get up too quickly.  Glad the rehab nurses were great.  I hope in time te op will be worth it.

Great to have your soothing presence around on the forums.

[Mazarita]

Hi @Sophia1, good to hear from you post-op. Great that the tumour was benign. Not so great the run around in the aftermath of surgery. Sending best wishes for smoother and faster recovery from here on in.