Venting

Hi Mrs. S.,

It's such bad luck that nothing has worked for you. I wonder if you could access an inpatient pain program like lindajane mentioned. I know you went through pain management before, but you had such a journey to get there and back, it may have defeated the purpose.

I am also sensing that you are exhausted and could do with a rest too. It might be worthwhile speaking to your doctor about an inpatient program and see what he/she thinks. Constantly having things poked into you and other procedures are obviously just making you worse. This is no good at all.

I am glad that you at least made it to the dinner last night, even though it was so difficult for you. Don't listen to other people, just try and ignore them. If you have to, tell them off. They have no idea what we go through and they probably never will. I have lost count of the number of people who have given me well meaning advice or miracle cures. It just makes it all that much harder. They mean well (in most cases; some of them just think we need a couple of panadol and to get on with it) but it doesn't help at all.

All the best,

Mary

Ah Linda, really so very sorry to hear you going through such a rough time. It reminds me of when I was in that position many years ago. Things are very different today that's for sure.

Linda, I just cannot offer you one single word that can make it easier for you, because I know where this all goes if you can't work it out. It doesn't have to end in the same place I ended up in, but with your pain condition not being fully under control, which is feeding into your depression, it sounds to me like it is just going to bring you to a grinding halt one day.

Mary's suggestions are great and I would definitely look into them.

Tell me. Have you made any enquiries about the Disability Pension at all?
Do you believe that your health is only going to get worse or not?

I know you will say that the pension won't pay the mortgage. Well, you will be surprised how much the side-benefits of being on the disability pension, are actually worth. Your medication costs will plummet, you'll get more financial help for the kids, there will be supplements/rebates for electricity, education, car registration and many other things. If you believe your health is heading on a one way trip down the toilet, then maybe you should consider the pension.

What I can see happening to you, is the totality of this burden that is lying on your shoulders is driving you to thoughts of suicide. You probably wish you could just give in to this thing, so you can have a little respite, but you know you can't because you have to pay the mortgage. It's a vicious cycle you are on and you cannot see any way out of it.

Coming in here to spill it all, is a great way to get a lot of crap off of your chest. So please don't stop doing that. It is important that you can vent these feelings of anger and frustrations in a safe place with a bunch of people who completely understand your circumstances.

I wish there was something I could say to help you, but there really isn't. And as you have pointed out, the stigma problems out there are often too much to take. I can only hope that you don't suffer them too much.

Take care and keep talking to us.

Peter

Hi all ,

Well just made my fortnightly payment for my pharmacists overseas holiday $136 and I didn't flinch this time just haven't told the boss.

Johnno

Hi Lindajane, please keep venting here, as we both did tonight. Sometimes just getting the words out helps to release even a little of the pressures living with chronic pain, and it saves me taking my frustrations out on those around me., and on myself.
It must be so difficult when you dont have family support close by, especially when you have young children.

There have been many nights i have called Lifeline, and talking with them has helped when i didnt know what to do with the thoughts racing through my brain, so dont be afraid to give them a call. The hardest part is picking up that phone and asking for help. From being incoherent and crying they have been able to calm me down until i could think rationally again, and i honestly dont think i would be here now if it wasnt for making those calls. Talking with a stranger who listens to you without judgement means such a lot , and we can let our guard down and express the angst we are experiencing without it coming back to bite us.

I have found that i have had to increase my antidepressant as the pain has become more consuming over time so it may be worth talking with your doctor as it sounds like an increase may help with how you are feeling? I have had to double mine, but it has helped keep me on a more even keel , although as you can see by my post tonight, there are still times when i get so overwhelmed by the pain and sleep depriivation that i feel i am being crushed by the waves pounding down on me.

Living in a small town myself, i understand the pressures it can bring, when everyone seems to know our business, most times they are so far from the truth it is laughable. But there have been many times i have seen and received the support of a small community when someone is in need, which is amazing .
i was wondering if there is an afterschool program run at your school thst you may be able to access? Or as Mary suggested the other parents may be able to help. And if you have a community house in your town, they may have a foodbank which you could access if you need to live in , our town has one which supplies frozen cooked casseroles to families that are in need of the service, and has information on other services available that may be helpful to you.

Keep twlking Lindajane, we have a safe place here with support from others who have the understanding of what living with pain and how it can leqve its mark on every aspect of life as we knew it and change it completely.

I think there must be something in the air at the moment. Everyone I know who is going through tough times seems to have had a shocker of a few days. I hope that we all manage to get some sleep tonight and wake up to be better day tomorrow.

Hello everyone and thank you for your support. I woke up today feeling just as desperate unfortunately, made worse by the fact that I had to come to work. This is a big part of my problem as sitting at a computer for eight hours is just so hard on my neck and by the end of the day I'm a mess. I only work three days a week but I find it very hard. I spoke to my boss about reducing my hours to school hours to fit in with my husband's new job but she said no. I'm looking for a new job with shorter hours. I feel I can do some work but just not for so long at a time. I'm also angry that my boss wasn't more helpful I guess but I don't want to go into the pain issue with her because it will affect perceptions of me and this could stop me finding another job in the future.

I tried to see my doctor today about the depression but she was booked out. I do have an appointment on Friday already set up so I will talk to her then.

I will talk to her about the pain clinic too. I think I'm at the point where I will just have to make it work somehow. Our school doesn't have after school care but they are considering it.

Thank you everyone for letting me get this all out, and take care.

I'm sorry to hear that, lindajane. Coming from a small country town myself, I know what you mean about things getting around that could be prejudicial. I hope you can find a job that suits your needs very soon. I also hope you can make it to the pain clinic so you can get some better tools to manage your pain.

Thinking of you.

Hi JrP,

I think you're on a winner there I am having a bastard of a time whereas I have increased my medication .

I discussed this with my doctor and I am taking a Xanax which assist in my sleep pattern , my surgery for the old tear is due before Xmas god I hope this reduces the pain .

I find the weather is also giving me grief especially any strange type of phenomonen in the weather, was very difficult day yesterday it wasn't until I got home that I realised that I hadn't taken my morning medication .
I suppose it is only now that I realize that medication may be a part of my life and don't see me being drug free for a long time if at all.
Shit happens .
Johnno

Lindajane , you worded it just right the structure that rules our life. Every action, every thought and every feeling is governed by PAIN! Our world is pain! I have been there for the last few months and meany times before but I want better. :angry:

BUT.......... how we choose to live it is up to us, to live for our families & friends, the smiles and the love that is still in our lives. To make every day mean something even if it is filled with doctors, physios, tablets and pacing we can still add moments of joy. It is up to us to make our lives something positive. I couldnt have said this last week as the pain was so high and my job looked threatened my world was dark and hopeless. So yes our world will have bad times but we need to search, dream and find those good days and know that they can happen.

I hope that we all can find some light in our worlds we all deserve some.

Wendles

Hi Wendles, yes there are so many ups and downs and it is such HARD WORK! I'm doing a little better than I was. I had the day off yesterday and went back to my stretches and went for a long walk.

All I have is arthritis in my neck. Compared to some of the stories I read on this forum, it seems so trivial but the pain just never lets up. I was talking to a friend yesterday who phoned to see if I wanted to go out for drinks. This friend knows me better than anyone so I was honest with her about how I've been feeling. She said she can't believe they can't just fix it (the neck pain), there must be an operation or something. I had to explain that I've been through all of that and my only approach now is to learn to manage the pain. It's a scary thought knowing that you will have pain forever and that it will most likely get worse.

If someone had told me ten years ago that I would have pain for six years I would have said there's no way I could endure it. I know there's people on here who have had pain for much, much longer and still manage to live their lives, and that does give me some hope.

I hope everyone has a good day today!

Linda you said, "Compared to some of the stories I read on this forum, it seems so trivial but the pain just never lets up."

Do yourself a favour. Stop comparing. Okay!

In our world, there is no such thing called "Trivial," because everyone's pain experience is unique to them and we all live and cope with our pain very differently. I have known people to be absolutely crippled with pain that only occurs in one hand. How is there experience lesser than someone who has had steel rods placed up their spine to keep it from disintegrating?
Answer. It's not!
Why?
Because pain is subjective and very personal.

We all have different pain tolerances. I have also known people who have suffered the most horrific injuries, had huge and many operations to correct all this, and they have come out the other end smiling like a Cheshire Cat. Why the heck are they not crippled with pain?

Do you see where I am coming from?
Your experience is bad. It has driven you to this forum and also driven you to depression and despair, just like it has for all of us at some point. Depression and tears are often our companions and we need to shed the tears, but control the depression.

And what you said about learning to live with your pain condition, is just so spot on. Once you accept you will probably die with this pain condition, you will take a huge load off of your shoulders and you will then start to improve. We have all found that during the time we were wrestling with our pain conditions, fighting a huge battle to find a cure, trying out all sorts of remedies, we suffered the most horrendous pain and wallowed in depression and despair.
Once we gave up on fighting a war and accepted our lot, most of the depression, all of the despair and some of the pain just disappeared.
How much of the pain disappears, will depend on your strength of mind and what you actually physically do to help yourself self-manage your pain condition. These are the skills you will learn at a pain clinic.

Anyway, I have waffled on yet again. Can't help meself sumtimes!

Just know that we know you suffer, just as we suffer. No more, no less! We are all suffering this accursed condition and there ain't no levels to it.

Linda, I have suffered chronic pain for 54 years. Does that make me a super hero? No! Not in the least. Actually, it has been easier for me than you, because as a child I never knew what it was like to live without pain. So, I never knew any better and just thought it was normal. The brain can cope with a whole lot of pain, if you are prepared to allow it yourself. You have to give yourself permission to suffer this pain without it causing you any grief. You will learn how to do this. The sooner you do the better!
So, I draw on my experiences as a child to get through my bad days as a 57 year old man. And believe me, it helps me out big time.

So yes, you can live a long life with pain and it will eventually become your new 'normal.' Just give up the anxiety, despair and the war. Accept your lot, then start to move forward into this new life. You'll be so much more happier once you do!

Peter

Hi guys ,

Peter is like a patriarch of this site he has endured what we have endured for a long time he does understand pain and has learnt to live with this extra load .
We are in the most part veritable babes ,and have this journey we have been given to travel , however we do it .
Some days are diamonds that turn to stone we have to learn to think of other things to help us through day by day, week by week , year by year till we learn to carry this burden .

Johnno

Yes Johnno, I'm gradually coming to terms with my situation (and this forum helps so much) but it's hard going sometimes! Peter, you are simply an inspiration.

Hi lindajane,

All chronic conditions and especially chronic pain have heaps of ups and downs. You are doing so well! You will find that sometimes it will be much harder than other times. This is normal, so just try and go with the flow and have strategies in place to try and pamper yourself, relax or whatever you decide is best for you. The next day will probably be better. As time goes by, you will find that your focus will gradually shift to other things (especially if you can do a pain management course because it will help with all that).

It's not easy but I guess it's like having diabetes or MS or Parkinson's or any of those other chronic conditions. There is a period of adjustment, which is often lengthy, during which time you go through a period of reorganising your life etc.

Keep talking to us. We are here to support you through all this 🙂

Mary

Thanks Mary. I guess it is early days for me yet. Even though I've had pain for six years or so, it's only when I did the online pain course earlier this year that I developed any kind of acceptance of it, and stopped looking for miracle cures. This forum is such a support for me, particularly at the moment. I really don't know what I'd do without it. I'm feeling much more positive than I was earlier in the week.