Lived Experience Forum

[Doglover]

Hi @Gazza75 , thank you for your post.

The increased meds for sedation worked for a night or two then not. They just kp increasing, it kps working for 1 night, maybe 2, and that's it. But it makes all my symptoms worse, that's why the increase doesn't work for long. The burning sensations, terrible head symptoms, they all increase the more meds I take. At the stage now where sleep is becoming more and more elusive, even tho I'm almost on the highest dose of med for sleep, and taking plenty of other meds that r supposed to have a sedating effect to. So I am rly scared as to where this is all going to end up. Rly scared. I rly hope I can make it to private stay too Gazza, but it's not looking too promising.

Things aren't too good on the home front either. My hubby is not coping with this well and basically thinks I shld just snap out of it. He can be very harsh, hard and even cruel at times, so that's not helping matters!

I rly hope when I do get to hospital that they r able to help me. They haven't bn able to help me as an outpatient for 10 months so I rly don't have much confidence that things will b any different as an inpatient, particular with my concerns about the ingredients in the medications causing problems.

It's grt that uv bn able to get back to work full time Gazza, and they kept ur job open for u. I hope and pray they do the same for me, I rly do.

I hope my doc is willing to bulk bill, I rly can't afford it otherwise. My husband needs to get a job to help us financially but he is dragging his feet and our financial situation is very limiting. I will need to start paying for psych soon, plus the cost of private health cover, and we just don't have the money for it ,but it's important. It's rly frustrating me that me husband is not taking more initiative. If he doesn't get a job, I can't get the care and support I need.

Hope the car didn't cost too much to fix, and hope the med reduction is going ok. I'm petrified about this medication wash out they want to do, just how bad it's going to be.

I m sorry the last year has taken it's toll on u Gazza, but totally relate. I feel like my life is in ruins, physically, mentally, emotionally, work wise, marriage, general quality of life, just in tatters, and it breaks my heart that there doesn't seem to be anything I can do about it. It's heartbreaking.

Anyway, on that depressing note, il sign off now. Sorry to b such a downer. I'm glad life is a bit better for u now and that u r at least able to work and function in societyy, that is a big bonus.

Take care @Gazza75 . Chat soon 

[outlander]

Thinking of you @Doglover 💙

[Gazza75]

Hi  @Doglover , 
That's so horrible about the meds and symptoms and pretty much everything else.  It's got to be so hard on you and your husband.  It's understandable your scared and getting more fearful about everything.  Along with lack of sleep, I can understand why its taking a toll on you.  I wish hubby was more supportive, I'm sure you could do with his help right now when things seem to be impossible.
 
Do you mean the public hospital hasn't been able to help you for 10 months or the private one?  I thought the private one would have different doctors and may be able to try alternative treatments for you.  You have been very brave and courageous to fight as hard as you have been.  Most of us would have lost our marbles by now.  I certainly would have.  
 
I hope you can get some financial relief with your husband starting to share more of the burden with you.  It's not just a matter of being able to snap out of it.  That's a very narrow minded view on things.  
 
I have my fingers crossed for you on the bulk billing, you've got to get a break soon DogLover!  I know you are worried about the wash out, it's understandable. Maybe it won't be quite as bad as you think.  Could you ask more questions about what it will involve so perhaps you won't be as fearful?
 
I'm glad we can relate to each other, I'm not married, but, everything else you mentioned resonates with Me.  I'm at work, but, I don't really want to be.  I'm getting by, but, everything is different now. I am trying to turn things around, but, its not easy to keep pushing for little or no gains.  It's hard not to feel trapped in a helpless cycle. 

You are doing what you can about your situation, without much help.  Thanks for your kind words and encouragement despite the horrors you are going through.  Just remember your not alone, a lot of us are supporting and barracking for you here.

Take care 

[Doglover]

Thanks so much @outlander , I rly appreciate It. Things still just as tough, just trying to hang in there. I hope ur doing well Outlander.

💜 Doglover.

[Doglover]

Hi @Gazza75 ,

This is a reply to your message on the 23rd - sorry to take so long to get back to.

Thank you so much for your support.

Yes it's been a very difficult time and very hard on both of us that's for sure. My husband came to a meeting with me yesterday which was to try and help him understand things a bit better and he has been a bit better since then, but it's only been 1 day so don't want to get my hopes up too much yet! 

It is the public hospital that I have been going to for the last 10 months and I am no better. I just seem to have so much problems with medications. Iv got about 10 days til private cover kicks in - it's a day by da y proposition as to whether I can hold out til then. 

I hope something will be forthcoming job wise for hubby too. He has made a few contacts but cld still be doing more. 

I have tried to find out more info re washout - they're pretty cagey. I think it's going to be pretty torturous to b honest and I have no idea how I will get thru it or what they will b able to do to get me thru it.

I'm sorry you do it tough too @Gazza75  and that u sometimes feel feel trapped in a helpless cycle, I understand that one all too well. 

Thanks so much for your support and encouragement Gazza, I really appreciate it. It's nice to know that thr are people on here like u that rly do understand. Thanks Gazza. I wish u all the very best. Take care of urself. 

💙 Doglover

[Gazza75]

Hey @Doglover , hope you have managed to get some rest in over the weekend and that your feeling alright.  You are edging ever closer to private hospital.  Hopefully the panic isn't building up to much for you.  I'm glad to hear that your husband is being more supportive after your meeting.  

Its a bit strange the hospital aren't forthcoming with information about the washout.  I'd find it more comfortable if I knew more about it.  As for getting through it I think your just going to have to grit your teeth and prey you can.  From everything you have said and experienced, its not going to be easy or pleasant, however, maybe once your through it life will be more bearable and even enjoyable.  I really hope so.  

I don't know if you listen to much music, but, that could help you get through.  Maybe get one of those sleeping masks to so you can blockout light.  They only cost a few dollars.  Pack extra clothes in case you sweat a lot.  Pack some of your favourite dvd's or movies so you can relax some of the time.  Do you know how long your admission will be?  I'm not very religious, but, will definitely say a prayer or two for you when you go in.  Think I read somewhere that its the 5th?  Have everything crossed that you can hold out till then.  Take care.   🙂  💙

[MDT]

Hey @Doglover
Thinking of you my friend
Had a read of your post

[Doglover]

Thanks @MDT , just came over here to tag u. As u can see, I'm not in a good way either. Doing it ridiculously tough. I'm sorry ur struggling too my friend.

[MDT]

I hope we can both get through it soon @Doglover

[Doglover]

Thank you @MDT , so do I, I rly do. Every day, every moment of the day is torture for me due to my symptoms. I rly hope things aren't as bad as that for u, but it sounds like ur doing it tough. Do u ever think - 

I don't know how much more of this I can take? I do, regularly. And yet somehow I get thru another day.

Thinking of u my friend.