Lived Experience Forum

[Emelia8]

Thanks everyone 

@Shaz51 @Clawde @Eve7 @BlueBay @Anastasia @Bow @Snowie @Appleblossom @tyme @Oaktree @HenryX @Faith-and-Hope @Zoe7 @simplesymbol  and others.  Hi @Former-Member 😊

Not doing that well actually, the lack of sleep is playing havoc with my wellbeing right now.  As I explained to @NatureLover elsewhere, I cannot entirely blame the lack of sleep on an increase in pain levels.  I have also commenced a new course of EMDR therapy.  Only in the preparation stages right now, but it has involved what they call 'mapping'.  This means the therapist is getting a lot of the trauma incidents out of me so that she knows what specifically to concentrate on when it comes down to the business end, and what can be processed together.  So it is bringing up a lot of old trauma memories that I have tried hard to push down and forget.  So there are many nights that things just churn through my head over and over.  Its like everything is in fast forward or rewind or something, and you don't know how to stop it.  I am currently having two sessions with the clinical psychologist per week, and some of that includes getting me ready to be able to deal with what is involved in the therapy itself.  She assures me that I will have the support I need, should I need it.  I guess that's reassuring, to some extent.  But its also daunting, when I am here on my own.  So yeah, my lack of sleep is partly to do with what's been happening around this over the last couple of weeks.

Now, you asked about when my surgery is booked in for.  Currently the 11th October, which is still 4 months away.  The specialist told me that there is a good chance that I will get called up earlier than that, given all the COVID and flu around, and likely cancellations.  Although the surgery booking nurse told me that there are a lot of people on the cancellation list, so that didn't sound so promising.  I think I just have to be prepared to accept an earlier call up at any time, should I get the call.  Otherwise I wait the 4 long months. 

I think the surgeon is reluctant to do the new surgery too soon anyway because there has been some unexpected reactions from my first surgery.  And those complications will make subsequent surgeries more difficult.  I think he is hoping it may improve a little over time, hence why my surgery was scheduled so far in advance initially.  Yeah trust me to develop a rare reaction to surgery!  Cannot seem to take a trick at all.

Not sure I told you or not, but what I thought was a single surgery is now a double surgery.  First surgery through the front to remove discs from the front of the spine, via an incision through the tummy.  They remove the damaged discs which are causing issues with spinal cord and nerves, then put in artificial discs and bone graft to the front of the spine to fuse it. A vascular surgeon is needed along with the orthopaedic surgeon. Then some 4-7 days later they open me up from the back and remove parts of the spine and again use bone graft and then rods and screws and then sew you back up again. All pretty daunting stuff.  Will be in ICU for several days after each surgery, and in hospital for a longer period than I was last time.  And back into rehab all over again.    

Meanwhile I am still doing the day rehab (exercise physiology and hydrotherapy) twice a week.  That will end after another 2 weeks, which I'm actually quite pleased about because I feel that everything I do is exacerbating the pain.  I get depressed that its been a month since I started back at rehab and it has not gotten any easier, and I am not making any progress at all.  I still need my walking stick to get around if I am out and likely to be walking further than about 50 meters or likely to be standing for any time at all.  My leg is still very weak and will cave in without warning, which is very annoying.  And its still very painful.  Sitting is becoming even more painful than it was before.  Thank goodness I can lay down and rest since my surgery, even if I cannot sleep.  Sigh ... but that's just me having a whinge.  Sorry everyone.

Emelia 💞🤗

[Former-Member]

👋  @Emelia8 💖

Sorry to hear. Sending love and hugs to you. 🤗

 

[Appleblossom]

@Emelia8 

Wishing you strength

[Eve7]

Hello @Emelia8 

Thank you so much for the update about your health.

You are facing so much on your own and I wish I could jump through the screen and be there with you. 

Please be assured of my love and prayers in the coming months.

💚🤗🙏🤗💚

[Oaktree]

Oh my goodness @Emelia8 

That is a lot to go through. I hope the upcoming surgeries are more successful than your last one. You seem to be in pretty good spirits if you ask me. You are obviously one very strong person. I completely understand where you are coming from with the stirred up memories from the past. I was meant to do trauma therapy with my psychologist six months back so I wrote down as many traumatic memories as I could think of and handed it to her. Before that I had been repressing the memories and they weren’t affecting me on the daily. Afterwards I felt in a very vulnerable place. I couldn’t stop thinking about certain memories and feeling a sense of shame. We never did do the trauma therapy because my psych decided that I needed to do schema therapy first. Sometimes I wonder if we will ever get back to the trauma therapy and sometimes I don’t care if we don’t. The memories have settled down again for now. They can be so unsettling though can’t they? 
Sending you much love, hugs and strength.

Meggle

[Faith-and-Hope]

💖 @Emelia8 

[Clawde]

Hello @Emelia8  simply put, you are in my prayers every day 😍.

Thankyou for your updates, always wondering how your Day is travelling, and sending you my best of best wishes. Love from your Clawde❤️

[Anastasia]

💔 @Emelia8 

[BlueBay]

Love strength and support to you @Emelia8  xxxx

[Linette]

You are still standing. I admire your resilience. Take each day at a time.