Yesterday my sister took me to the movies as my birthday present for next Friday. The movie was great but by the end of the movie the tears were running down my checks. I ended up in so much pain that I could hardly walk out to the car. It was so disappointing that there are very few things I can do without triggering the agony which is my pain. It took al my medication and 2 hours in bed for me to finally get up to the lounge.
I am a bit upset that it is my 50th birthday on Friday and I don't think I will be going anywhere. My sister has informed me that on Saturday we are going to have afternoon tea and a few relatives are coming. That is really nice of her and I will not have to go anywhere. It is still upsetting that I turn 50 and I am like a old pensioner already. There will be no drinks no smokes no music just a few relatives to sing happy birthday.
I have to except that this is my life now but I wish that I could one day be well enough to go out to see a band or to just have my pain stop for one day. It is horrible and very hard to cope with at times. Maybe one of the new procedures will be available to me at the end of the year when I can use my private health insurance and have some real help. I will be praying this week that on Saturday my pain will be at a level that I can be with them all and not have to go to bed before everyone goes home.
I'm so sorry you are having so much pain, but like everyone else here, I understand what you are saying, feeling and where you are coming from. It's hard to look forward to special things when you have to carry the burden of wondering if your pain levels are going to interfere with having even just a little bit of fun. All the time, you know deep down inside that you have no control over what your pain levels will be. I know I will sometimes try and take it extra easy for about a week prior to any kind of planned event hoping it will help, but many times, it doesn't.
Living with chronic pain really brings things into perspective, doesn't it? I mean, it's easy to take the simple things for granted. Things like being able to sit through a movie, take a walk on a nice day, enjoy a family picnic, etc.
Family functions are normally on the weekend, however I miss many of them because I have to take the weekend to recover from my work week. This has caused issues with some of my family members, and it really stinks, because now I have to deal with feelings of guilt, along with anger and resentment from my family members. It doesn't do much to make a bad situation any better you know?
Anyway, sorry to ramble. I just want you to know I'm sending positive thoughts for major decrease in your pain so you can enjoy the tea with your family and friends.
I truly hope you will be able to have the procedures and treatement you need to give you a much better quality of life soon! Take care my friend.
[QUOTE=allanbruce;4165372. It is still upsetting that I turn 50 and I am like a old pensioner already. There will be no drinks no smokes no music just a few relatives to sing happy birthday.
I have to except that this is my life now but I wish that I could one day be well enough to go out to see a band or to just have my pain stop for one day. It is horrible and very hard to cope with at times. [/QUOTE]
hey allan, don't feel like that. I'm also getting old. I know, getting old makes me feel also sad But there is nothing to do about it. So please don't be so sad. Nobody stays young for ever you know.
I really know what you are going through. Believe me. I had hard time with doctors who didn't even believe I'm suffering. Some even were smiling and were telling me it's all in my mind. So I looked for another doctor. My old/new doctor(I'm back to my old doctor)is treating me really good.
He really cries with me when I tell him I'm suffering. I've never heard anyone had doctor like this. and he knows what it means to live with chronic pain.
You really need to find a doctor like that with your new insurance.
I know you suffer from chronic back pain. I hope things will get better with your back. Perhaps stretching your back when you wake up in the morning will help a bit?. I'm not sure. I'm just trying to find solutions.
Sometimes I really have good days and it all depends on the weather. My neck hurts today but I don't need to take the oxycontin(now I'm on the same dose as you 40mg oxycontin). I wish I had my old neck back but it's not possible. I've already accepted my situation of taking pain meds till the rest of my life. I have no choice.
Happy Birthday Allan. I hope you had a lovely day. I'm so sorry that your pain was like that.
Hey, I know this isn't a fix (yet) but you can start seeing a neurosurgeon privately already (seeing as the private health funds don't cover the appointment costs anyway) and find out what might be done for you later in the year. That way at least, if they do day they can help you, you'll have something to look forward to at the end of the year. I did this after I swapped over from workers comp - kept seeing my neuro because the cost was no different if they weren't operating and then as soon as the year was up, I had my surgery on my neck. It's just a thought.
What sort of meds are you on these days, it's been a while since we've spoken. I'm heading out to the movies tonight and I'll be taking an oxynorm 10mg and half a valium before I go - otherwise, like you, I can't walk out. I so hope that something can be done for you.
allan most of us can relate to you , noticed your age ( same). Was at docs today, with my cane and small shoulder purse ( can not wear big purses to heavy for me) and a little ole lady was there with a cane as well. She reached over to my hand patted it, and stated i am so sorry you are in so much pain. I looked at her and said it is so strange that you are dealing with so much and reach out to me. She said anyone can see its in your eyes. While a strange conversation it was heart warming to know that even in her struggles she reached out to me. I truly think others in our situation have the ability to see what other folks can not.
My son is getting married in March, his wife to be is having a shower this Saturday. I had to send my regrets. Outings except docs are very very hard for me. So i hear you and can understand your struggles. In another thread i will write about latter what i can still do and what i do to pass the time when clearly not in a position to do lots now.
Soft hugals and at least here you can vent..
Thanks Jema I just might do that, as it has been on my mind (of course) and I would like to find a surgeon better than the last one I went to. Also one a little closer. I will have to talk my GP around to referring me again as he has not been very positive about me getting surgery. He has never been very supportive when it comes to my pain, he just writes a script and changes the subject. He is at least going to treat me for low testosterone that is one good thing. But I can always get a referral from my specialist. So I might do some research into another neurosurgeon at a hospital that works with my health fund.
Your doc sounds so insensitive. Sorry to be blunt but everytime you write about him, it's the same thing - he won't treat your pain. You deserve better. Is it possible to swap to a new doc and take the time building a relationship? Some doctors have a particular interest in PM so you can ring around surgeries and ask and they'll often book you in with someone - though it can take a couple of months before they'll change your scripts. You have a good history - in that you've not stuffed up with your meds and you're trying really hard to exercise etc so I'm sure someone would be happy to take you on. When I moved back here I wrote a letter to my dr requesting that he take over my care even though it was so complex - he was a gp that I really respected from my drug repping days. he was more than happy to take me on and has never let me down.
Seeing a surgeon now will give you something to hope for for the future. Tell your doc that the last neuro said that you needed a follow up but you'd prefer to go to someone else now you have private health so could he please refer you to so and so. That should shut him up.
To be honest I'm surprised that you're coping on 40mg of OC when you were using the 100mcg patch. It must be hard. If you do change docs then I think they will look well on this (as in you tried to lower your meds but you just couldn't). I think it'd be worth finding a new gp, someone who cares. What do you think?
Thanks Jema, I did find a lovely lady locally who was helping me a lot but apparently she got sick and had to retire. I was so upset. I tried another doctor at the same clinic and he point blank said he will not approve of any narcotic medication and he put it down on my file. That made me really mad and I had no option to go back to my old GP who is further away as we had moved. He gave me the script but said strait out that he would not increase the dose of 40mg twice a day.
I feel like I could be taking it 3 times easily and the endone I get is 20 of 5mg that is supposed to last 2 months.
I have noticed that there are a couple of pain clinics opened not far away but I am cautious of pain clinics and there methods. Maybe I am wrong so I am going to actively seek out a new doctor and surgeon. I may see the old Ortho one more time as I know he is a good surgeon but has a lousy bedside manner. But after that I will make an appointment to see a Neurosurgery and spine clinic at Greenslopes I may even ring them first.
As you say I do need a new health team who can work towards the right surgery for me. Thanks for your advice as when I am like this I just can't get it together.