Lived Experience Forum

[tyme]

Sorry to hear you are so worried about everything @ClockFace . It seems like you've picked the short straw. 

Your posts remind me of your strength and your bravery. I hear it is so difficult right now. I hope things get better for you.

[ClockFace]

@tyme 

Thanks.

I ended up calling, the lady was helpful. Always are 

[tyme]

Hey @ClockFace ,

Just wondering, have you ever come across this helpline? https://arafmi.com.au/carer-family-support/

It's for carers. I'm not sure how they are, but I guess it's another service you can have up your sleeve, 24/7.

[ClockFace]

@tyme 

That might be helpful but Im about to write a post regarding my carer role

[ClockFace]

@tyme 

On the 22nd March I had surgery to burn the nerve endings in my SI Joints (Where your spine and hips connect). Things havent gone exactly to plan and I am in more pain now than before the surgery. After a few hit and misses as to the reason they have landed (at the moment) on a nerve lesion. Im on high dose pain killers which is making me pretty drowsy as the day progresses, so in the morning Im ok by about lunch time Im drowsy, a few hours later Im getting pretty keen to go to bed. 

In addition to this my mental health has spirilled. The pain, the ripping away of being out of pain, and everything else going on in my life has caused my depression to get really bad and I have struggled with SI quite severely. My psychotic symtoms have thankfully taken a bit of a break but are still concerning me.

As my pain is horrible and I get drowsy, driving has been limited. I can manage driving locally but not much further. I also have to be careful where I am sitting, so it has to be a firm seat, like I sit in a kitchen chair primarily so where ever I go I need to know I have somewhere I can sit or Im going to be in more  pain. So going and seeing my sister has been not happening, I think I have managed it once. 

So with all the above I have had to take a very large step backwards in my caring and supporting role. Even at home Im not doing, well anything. I have all but stopped. Im still calling my sister but its limited because she doesnt need me on the phone all drowsy and shit. 

Over the past little while different services have been engaging with my sister so when she gets home she has more supports in place and services to rely upon which means unlike last time it isnt just her and I trying to fight our way through systems. I mean Im still trying to do that for myself but I can handle that, its getting her help and me help at the same time that became an issue.

Ill do what I can to help her when she gets home (early to mid next week) but I am going to have to remain backed off. Mentally and physically I cant keep going. She knows I love her, she knows Im backing off cause I cant do it, not that I dont want to. 

Dad has done a good job stepping up and helping, they seem to be fighting less. She is going to have to spread the support requirements over both Dad and I and Dad is going to have to keep it up

[ClockFace]

I actually got some good news. Ive been off work on unpaid leave since the 16/1. Ive relied on my Dad to pay my bills, medical costs, etc. Ive racked up quite a debt.

I just got word however that my Salary Continuance Payments (Income Protection) has finally been approved. Im just waiting to find out when they are going to determine it starts (there is a period of 42 days they dont pay) and how much the payments will be. So my average wage prior to going off sick they will pay 80% of this.

Im not sure when I will start getting paid yet but I will have some kind of income. I should get some back pay which will go off my debt with my Dad but I expect  that I will need him at times to make up the difference simply due to medical appointments etc.

But at the end of the day, I have an income again, this makes me somewhat happy

[ClockFace]

Just got a call from my Drs Office my GP is sick and wont be in tomorrow, when I was supposed to have an appointment. 

They are getting funny about all the different doctors prescribing the pain med Im on cause its controlled, so I was supposed to talk to her about a longer term plan to get me through to the 19th when I see my pain specialist. I was also supposed to talk to her about all my meds, trying to drop some cause Im on so many. Getting an up to date list, right doseages and all that so I can update my Webster packs. Ill have to wait until the 19th when I have my next appointment with her but they have made an appointment with another doctor for tomorrow to get pain meds. I dont particularly like this doctor and I wonder if he will give me a full pack or just 10 and be a jerk. 

Now I have to work out how I manage pain meds and getting them until the 19th without my normal GP. I have a doc thats helped me heaps on the 17th so I dunno, its just shit. I know doctors get sick too but I was actually feeling reasonably happy and again shat on

[ClockFace]

With the first 1 or 2 pain meds I take I tend not to be drowsy but I am still in pain. It means for the first few hours of the day I can go into the petrol station on the outskirts of the main town, about a 15 min drive. I get my drinks and smokes for the day and come home. I cant get into the local woolies tho, well I could get there but Im in too much pain to do any shopping. Tomorrow I have to try and stretch out the time between meds so I can get to my doctors appointment as my Dad wont be around to take me. 

Anyhow once I take my 3rd tablet on the pain really reduces, like I could  do stuff but the drowsyness increases stopping me doing stuff. By my 5th tablet Im in no pain, none anywhere at all, but Im so drowsy that bed is the only option. 

Drowsy isnt really the word but I dont have a better one, my head is wobbly. I cant concentrate. Like writing on here becomes a challenge and Im often stopping, closing my eyes as they wont stay open anymore and kinda briefly checking out. Sometimes I get a choice, like I can feel it coming on other times its like a blink that goes on for a while. If I allowed myself after tablet number 3 I would be in bed for a while, Id probably go to bed, the pain would start so Id be up for another tablet and back to bed.

It shits me that Im so limited on what I can do, but if I allowed myself to sleep most the day away that would really do me in. Like mentally I wouldnt cope at all and I would have to seek hospital care. At least awake I can post on here, I can respond to a few posts, I can talk to my sister and help a little there. My Mum sleeps a lot, like pretty much all day and it really grinds my gears, she could be doing to much more, so much for herself and so much for her family but choses not to and if, even with good reason, I started to do the same I would feel so ashamed of myself. 

Being in pain or drowsy for the whole day is wearing really thin. I feel like I am letting Dad down, it was supposed to be a 2 day recovery and here we are with no idea how long the recovery will be. How long until I am a productive member  of the family again, not a burden. I do my drinks and smokes, meals are from lite n easy so my primary needs are met for myself but simply taking myself to a doctors appointment in town (1hr away) means Dad has to give up his time. Dad has to do my chores, not like there are many but its more time Dad has to give up because of me. All because I chose to try and be in less pain. I would do it again though, I would take the opportunity to be out of pain again, even knowing this would be a risk, even knowing this might be a permanant risk. 

People who dont suffer from severe chronic pain might not understand but it wouldnt really matter the risks I would just about, Im not sure what risk I wouldnt take to be out of it. I have a pain patch that costs $30 a fortnight, but need me to see my GP fortnightly, like primarily my GP others might not prescribe it cause its that controlled. So I have the cost of the pain patch but also the appointment. Then theres the wonderful oil, which Ive now discovered doesnt help anymore but thats $150 for my last bottle, but if I were to continue it would cost around $300 just to get to the point of being able to be prescribed a bottle as I would have to see a new doctor and they would charge me whereas the doctor I used to see helped me out a lot.

The pain patch we had to get special permission to keep using it because I had been using it for so long. Its that controlled. It will shorten my life. So yeah, a procedure with risks, not an issue.

Ive gotten off track. I wish I could help my Dad, I was going to say more but Im really not helping him at all at the moment and I wish I could change that.

[ClockFace]

I have a lot of trouble with sleep. I take my night meds and I have no choice but to sleep within like 30 minutes or so. Ill sleep until the sedative effect wears off at around 2 or 3am and Im awake. Ill be awake for an hour or two and then go back to bed and sleep a couple more hours, sometimes I wont bother going back to bed. 

Id really like to get a full nights sleep, the last time that happened was when they gave me the injection of anti-inflamatories 10hrs without waking up.

Drs dont seem interested in giving me a drug to make me sleep, think they are worried about the sedating meds Im already on. But maybe if I slept through the night I wouldnt need all the meds. 

I was supposed to be going though my meds with my GP tomorrow and that was gonna be on my wish list. Realised its gonna need to happen with this guy anyhow as I need an up to date list for my psychiatrist appointment on the 21st

[Bow]

Hi @ClockFace  is sleep something that you struggle with regularly or just recently with your pain? 

I struggle significantly with my sleep. I’m on an antidepressant and antipsychotic, both that have a sedative effect and also a sleeping tablet. I still struggle with sleep. It often takes me ages to fall asleep and then I wake a lot. My pdoc talked about prescribing something that I can take when I wake in the middle of the night to get me back off to sleep, but we decided to go with the sleeping tablet, which has had very little effect. I’ve also trialled a strong antihistamine to help get off to sleep. 
If my mum wakes in the middle of the night she will get up and have something to eat and drink and then she is able to get back to sleep, maybe try that? 
but do talk to your doctor