Venting

Dearest Pam
Your probably not the only one feeling like ending it all at the moment.

Chronic pain can wear down the strongest of us ,with suicide seeming to be the last resort. I know in the past I have been there and luckily have managed to avoid this step as have many others who post to this site.

I remember when you first posted online having coped with this over many years and were still working at that stage

. I have had to make many changes in my life and still have to to avoid going back to level 9-10 every day. I know the feeling of rage and despair at medicine and doctors not being able to have a pill or some treatment to get rid of the pain. ]

I see in a previous post you have found some help and empathy locally and dont hesitate to reach out as much as you feel the need.

Im sure there must be others in Sydney going through similar issues and maybe a coffee club could be an option for all in that area.

Face to face meeting of people going through the same issues helps enormously to cope and support each other. I am just seeing if we can start one again in Melbourne.

Learning to be gentle with ones self is not always easy to reduce stress and if you feel the need shout out loud your frustration rather than go into depression give it a go . People might think your a bit strange but just tell them to **** of and that your execentric .

Your the one thats most important.

My thoughts and prayers are with you

Arjay

Wow, i didn't know this venting thread existed and has how many hundred pages now?!
I quickly read through some posts and see a common thing is that people in the pain prevention industry seem to be of the mind that you aren't really in as much pain as you make out. I had an interesting and supportive comment from my physio yesterday.
Whilst massaging my back to try and relieve the tension, he noted how tight the muscles to the immediate left of my spine were, all the way up my back to the base of my neck. To paraphrase, he said that if anybody ever questioned my pain level they should feel that muscle because the only reason it would be in so much of a spasm is because it is reacting to the pain in my lower back. I felt so justified at those words, finally somebody who understands and can in their own way see the pain that I am feeling.
Now, back to reading all these comments. It is like a book and definitely something I am interested in reading. If nobody looks at these comments, then what was the point of anyone writing them, apart from simply getting the frustration, anger and helplessness off their chest?

Hi pamcarr, I'm sorry to read you are in so much pain, that's not good considering the state you are in. You know I have been in the same state of mind as well but there is a light at the end of the tunnel. It's not fair that we are left to deal with chronic pain daily and a stupid psych has the nerve to say that to you.
Pamcarr, hang in there and you're probably sick of hearing that too I bet!! I hope your pain has settled down or will settle down soon.

Hugs
Gayl

Hey Pamcarr,

I always think of my grand daughters 3 now and say to myself do I want to see them grow older and see the beauty that they have become .

Taking the last step and thinking that way takes an extremely strong person ,so channel that strength back and say you bastard I am not going to let you win I have too much that I want to live for !

Fight hard Pamcarr because we all want to follow and help push you toward the light just constantly remember that you wake up every day alive ,which is the most miraculous thing there is and you are going to share that wonderful thing you have with everybody and I don't mean just family.

I troll my local Coles store and ask is everybody happy and it makes them smile ,just think that you make other people happy and don't lose sight of your goal

Fight please
Johnno

Lucky You Johnno, if you can troll through Coles...

Me, wow I can't even do that anymore because the nerve pain/pins n needles in my feet from my back doesn't allow me to linger through any shop so I do all shopping online...id love to go shopping but lingering/looking makes my pain worse and I am pacing so unfortunately that doesn't work...because of lack of movement/immobility that Has added extra kilos which God ( my pain specialist said is due to Lyrica) I tried to tell him when I was doing hydro-therapy my weight was was under control but then my legs started bee stinging worse from the hot water...now my legs are so tight it's hard to walk, they are stiff most of the time. I try and stretch them but they tighten up again. Nerve pain is the worst, it's insidious and it hits and it never stops. Having it in the feet and legs is horrific. And this is what happened to me after my double spinal fusion but everyone is different. I'm reading an interesting book written by Norman Doidge, look him up...about the brain...

Johnno don't let them burn the nerves...well it's up to you but I had those injections and what a waste of time, then he wanted to burn the nerves but because the injections didn't help I decided against it and Ive met people at hydro-therapy who said "I'm worse" from that procedure....hmmm so I don't know but I refused that option after the 3 injections didn't do a thing..

Now Pamcarr and some others (forgive me too far back now asked how I went with my appt with my pain specialist...

Well not good, nor will he tell my insurance co I have CRPS when I showed him my bright red thin skinned lower legs he said "right, sit down" I need to write to your GP now and get you off pain-killers...we don't give opioids for CRPS....I was gob smacked and I explained that I'm not going to cope with this much longer so what are my options...Get off pain medications.. I left in tears.

Every afternoon, I've had enough of pain (my pain meds have stopped helping, time to change them again so I hope my GP will accept this) anyway, I have to lay down every arvo because I've had enough of pain and i feel the pain running down from my back to my toes with the stabbing, tremors and spasms and the tears run down my face with the pain thinking this is what my life has become...omg...it isn't a life!!!

I can't even fly anymore with this back, my feet swell up the longer I sit and the pain escalates.
I went overseas about 4 years ago and recently I was sent for an assessment and my insurance company said to me if I can do that I can go to work and I said it was 5 hours and I was lucky to go to the back of the plane and get 3 seats to lay down and that was the truth.

And pls don't tell me to pace because thats B.S because I haven't done anything for this pain to escalate like it does...

So for those who asked where I live, I live down the south coast of Sydney and for legal reasons i can't say whereabouts exactly.

But I understand where each and everyone of you are coming from when you say you can't take too much more I totally understand that, I really truely do...

If anyone knows a dr who will diagnose a person with CRPS near Sydney without reservations because of insurance companies please private msg me and if I can afford to go I will...I only have my income because I am single so I'm not well off but I just want a diagnoses and justice...I need a new pain specialist, GOD (my Pain specialist doesn't care) ...

I'm at the point I can't even live for my grand-children as others have mentioned them...how can I? When I have no quality of life and I just want the Medical Treatment i need and they deserve the care they need to be looked after whilst in my care, it totally upsets me that my mood is all over the place so it's hard to have even one of them for any length of time.

And NO, I'm not a victim I just want the to find the right Dr who cares and who's not scared to fight for my rights. I have fallen over so many times because of my back so my knees need X-rays but that hasn't happened, my new GP says I'm doing your med cert today comeback another day, so it never happens...unfortunately my old GP retired and I saw them for over 30 years, they were kind care and stood up for me but my new one is scared and said I should be working...omg...I was medically retired I told them but they're scared of W.C.

To each and everyone of you writing on this thread, take-care because you are not alone with this terrible affliction called Chronic Pain. I am tired and I have No Energy but we are all here for a reason to learn from each other because we are all unique and an individual who is suffering and sometimes alone like me.

The nights are the worst for me because they're sleepless ones but then I want the days over so what lies a head, some acceptance I hope, that this is what it is and there is no cure, just forums like this to talk to one another and where we can relate.

OMG Gayl
Reading this brought tears to my eyes. You are such a battler. Your family has had knock back after knock back just like my family but I'm glad your going to start saying NO. You need to start thinking and caring for yourself. Your daughter is old enough to look after herself and if she wants to go on holidays and needs her animals feed, I'm sure she got friends who can do that for her.
And you don't rave on. Isn't this the place where you can release and talk to get rid of your stress? We're all here to listen!

Sending you lots of hugs

Hi darling Eliza,
We are here for you and will always be here with a knowing smile,a comfy shoulder,a soothing rub,hugs(cyber only, I'm afraid),a place to cry and rant and a people who know ,understand and feel your pain.

Eliza when I troll through Coles it's done on my Electronic Mobility Vehicle(EMV) I don't have an orange flag I have a pirates one ,this is the only ways that I can enjoy shopping so I tend to ring prior to going to see if they have EMVs that can be used for shopping once you are finished you can put your shopping in your car get security to come out to your car and they will take it back for you ,masters have them and haven't they got a lot of gear .

We have four sons all with wives and girlfriends so we are anticipating a load of grandchildren so it gives me something to look forward to.

Take care Eliza.

Johnno

Hi Pam
I'm exactly where you are financially. I was being paid by one gov. department (80% of my wage) for three years but then that stopped because the so called specialists said my injuries only came in at 12 1/2% out of 100. So in other words I practically had to be in a wheelchair for them to keep paying me my wage. So then I applied for DP but got told I wasn't entitled to do it because my husband earned too much. I just sat there and cried (on my own).
At the moment I do have some legal stuff going on, but I'm also claiming TPD through my insurance on my super and I can tell you it's been the hardest and longest thing I've done so far. It's been going for 2 years and it's finally in it's final weeks to see if the insurance company will accept my claim. Mind you my claim is over 2000 pages with all the information that they have requested. So if your solicitor can do something expect a lengthy process.
Have you thought about income insurance because sometimes that's on your super as well with the TPD, so have a look and you might be able to make a claim for that.
Just hang in there hun. I know it's tough but you will get through it. You just have to make a budget and prioritise what you do with your incoming pay.
Have you thought of doing My Budget. We did and it took so much of the stress and pressure off that we could concentrate on other things.

Hugs and Smiles

Why is it when things seem to be going good something comes along and sweeps rug right out from under you. I feel like I've been on a roller-coaster for the past few months and my depression and pain just keeps getting worse. It started with my 16 year old (who suffers depression too) being bullied at school and online. Within a matter of days I had her pulled out of her old school, enrolled into her new school and had a meet and greet with the principle and level co-ordinator from the new school. This was going good for a few weeks until she started missing day. She just refused to go no matter what I said or did and I could tell something was right. One of the days she went the school councillor rang me. I had a meeting with her and my daughter and my daughter informed me that she knew something was wrong with her besides her depression and she was sick of living like she was and she needed help. So she decided she wanted to go to the Banksia mental health ward at the Royal Children's. She was there for a week. Afterwards she started seeing specialists from Orygen Mental Health. She was diagnosed with Borderline Personality Disorder.
A week or so later I was informed I was getting a new case worker from gov. car department. My 5th since I'd been with them. This turned out to be a great move. The approval for my shoulder I had been waiting 3 months for with my old case worker was done and booked in 4 days with my new case worker. This new one was an angel.
Then I get a call from my dad saying that they had just been to one of his many hospital appointment check ups and found he had cancer in his mouth again (his 5th time). This time they operated they had to take all the top of his mouth and put a plate. Dad's had cancer 7 times and still has 3 very small cancer tumours in his lungs(not lung cancer) but can't operate because he'd die on the table.
Not after I get a call from car gov. case worker saying she will no longer be assisting me because it's been more than 3 years, I now go to a different department.
Two weeks ago my brother in law who's a mechanic came around to have a look at hubby's car because it wasn't running properly at guess what he said? You guessed it, THE ENGINES HAD IT!
I mean seriously! And while all this has been happening, I've been on the phone to solicitors and specialists for both my daughter and myself as well as trying to work appointments around on days when hubby or eldest daughter is home so I have a car.
Man I must have walked under an ladder or seen a black cat LOL! 🙂

Or killed a chinaman 😛
You have been in the wars Jacquie and I'm so sorry to hear about your daughter. I can relate to this as my 13yo granddaughter is going through the same thing. She started cutting her arms and refused to go to school. She built a wall around herself and wouldn't talk to anyone, not even family. She locked herself in her room day and night and only came out for for the bathroom and to eat, which wasn't much.
My daughter got her into a psychiatrist and she was placed in a mental health unit but after a week she was sent home as they needed the bed!! She ended up overdosing. The good news is she has turned the corner and is the loving granddaughter I knew. She has missed nearly 18 months of schooling and decided to go back this term. Just be there for your daughter whether she wants help or not.

Your poor Dad has been through the mill as well. It's very hard to see your parents so sick and I truly hope they remove this horrible cancer for him.
You hang in there and take care of yourself too.
Hugs
Gayl

Hey Dancer,
Which part of the country do you live, I know if you are in Brisvegas I could help in between appointments .

Johnno

Hi Johnno
I'm in Hillside in Melbourne hun but thank you for the offer. Just having all you guys has actually been helping. At least I got some good news today. My daughter, the 16yo, who has the disorder, found out she passed all her dancing exams from the weekend and I also got the date in which I'm finally going in to have my shoulder done which is on the 10th of August 🙂
Thanks again

Jack

Hey Dancer,

Melbourne painoes had a coffee meet a few months ago you could start a proposed meet and greet

Johnno