Oh dear Tired of pain, that’s really unfortunate that pain management for some people is a trap! Obviously its a job of doing your homework on any course you look in to
Seenie lol not a pole in sight!! The course is 8 weeks long every, Tuesday from 2 - 5.30 and I get concessionary parking!! Something that would have cost me an arm and a leg otherwise! Unfortunately it doesn’t look like my new manager has put the agreement into place which was for me to take that time as annual leave. But I’m currently off work because, although my PsA is in remission (Yay!!) The fibro has flared big time so although the pains not too bad the fatigue is horrendous at the moment.
I will keep updating each week 
Arrrghghgh....if it isn't one thing, Louise, it's another, isn't it? As far as the course goes, an afternoon a week doesn't sound too bad but why does it have to be annual leave? Isn't it the same as being off because you are poorly? Never mind -- it's still a wonderful thing that you are able to do this. Report back!
Louise Hoy said:
Oh dear Tired of pain, that's really unfortunate that pain management for some people is a trap! Obviously its a job of doing your homework on any course you look in to
Seenie lol not a pole in sight!! The course is 8 weeks long every, Tuesday from 2 - 5.30 and I get concessionary parking!! Something that would have cost me an arm and a leg otherwise! Unfortunately it doesn't look like my new manager has put the agreement into place which was for me to take that time as annual leave. But I'm currently off work because, although my PsA is in remission (Yay!!) The fibro has flared big time so although the pains not too bad the fatigue is horrendous at the moment.
I will keep updating each week :)
I think I know what you mean, ToP. Good to see that your sense of is in good shape! ;-0
Tired of pain said:
As fo r myself, I pee for no one!
I think most of us probably have had acute pain--which I imagine, due to each individual's pain threshold, what would be severe to one person would be moderate to another. To me, acute means sudden and severe. The kind of pain when you can't move--or when you move you are very limited. I had lots of pain in childbirth, but refused an epidural. My labors were quick, especially the two that were induced. So, we're talking about going from dilated to 1/2 cm to 10 in two hours. That means very intense contractions over a short period of time. The 4th childbirth, at 38, was natural, but there was about 2 hours of acute pain that I nearly couldn't take. No screaming, crying or swearing--but that is the kind of pain I think could kill me! Just kept saying, I can't take anymore! Labor is what I compare all my pain to.....the only thing that's come close to it is my back pain. Other pain, even if acute to me, is localized-like my feet-they hurt bad, but I'm able to figure out ways to relieve that pain temporarily.
Most of my pain from PsA was chronic, nagging, mild to moderate--not disabling--just more annoying and causing so much fatigue. That kind of pain eats away at a person, like erosion. It gets more and more difficult to cope, I think. Now that I'm not dealing with PsA pain as much as pain of damage from PsA, it's nearly as difficult to handle. It makes me lazy and not want to do my housework, etc.
It would be interesting to see if pain management could help acute pain. I'm not sure. Chronic, mild to moderate pain that gets in your head and just slowly wears you down would be easier to learn how to overcome its psychological impact. Sometimes I think my problem is more the worrying about what the pain is doing to me. Like right now, I'm worried my feet will become so bad I won't be able to walk in a year or two! That's scary! There's where pain mgmt could help me. Also, I worry about how PsA and the other damage it's caused in my body is going to limit me. I need to quit worrying, but really have a hard time getting these things off my mind. Do you think worrying or anxiety about the disease and what it's doing to you is big part of the problem?
(I've also been told I have a high pain threshold. I don't take many pain pills and especially not prescription ones.)
Well Seenie, As the govt. have encouraged a change in employment law so that it’s up to managers discretion if we are allowed time off for hosp appointment etc. As this was going to be a case of 3 hours every week for 8 weeks then I agreed to use some annual leave. If I’m still off sick from work it will only apply when I go back to work
I think our mental state has a lot to do with how we cope with pain. Worrying about anything in the future is probably futile but is very hard to control. From what I can gather we will be taught to re train our minds to hopefully eliminate the suffering that pain causes by acceptance of the pain and commitment to changing our behaviour towards it…I can see the sense in this approach but I’m guessing its hard to do and is something that will be an ongoing thing in a persons life.
I definitely think that would be hard to do, Louise, but pretty sure it is possible! Maybe it's like mind over matter? Or almost like self hypnosis? Right now as I sit in my comfy chair with painful feet, a stiff neck and ears ringing so damn loud it's beyond annoying, I've been in such worse pain in the past that this is really nothing. Getting out of the chair and walking will be difficult, as it is every time I get up, but since I know that, it's not too irritating.
I was just thinking, we could learn how to cope by just observing people who are extremely disabled--blind, quadriplegic, deaf, severely disfigured with birth defects, or any number of serious disabilities--but doing well. How do they live day-to-day and keep going? There's the power of positive thinking....I need a little more of that!
Last week a young woman, an actress & wheelchair user with JIA, was being interviewed on a radio programme. She had a part in the flamboyant show that kicked off the Olympic games in the UK. She said that for her it's key not to take too rosy a view of disability / pain but to keep it real. I think like Louise said it's a lifelong challenge to find what works for us. And I agree with you, those with severe disability so often take a combination of acceptance and determination to a whole new level, one that makes you realise that human beings have huge potential for adaptation to circumstances.
Grandma J said:
I definitely think that would be hard to do, Louise, but pretty sure it is possible! Maybe it's like mind over matter? Or almost like self hypnosis? Right now as I sit in my comfy chair with painful feet, a stiff neck and ears ringing so damn loud it's beyond annoying, I've been in such worse pain in the past that this is really nothing. Getting out of the chair and walking will be difficult, as it is every time I get up, but since I know that, it's not too irritating.
I was just thinking, we could learn how to cope by just observing people who are extremely disabled--blind, quadriplegic, deaf, severely disfigured with birth defects, or any number of serious disabilities--but doing well. How do they live day-to-day and keep going? There's the power of positive thinking....I need a little more of that!
I can't imagine the DEA busting anyone for pot in the system as that is a local issue but none the less. The pill mills exist if at all in few places anymore and that is not "pain management" or "pain rehab" Most of that is not the DEA or some other evil government entity, but rather the fact the docs themselves have finally figured out they have no clue what they are doing prescribing narcotics beyond acute situations. Most state medical associations are now prohibiting docs from prescribing more than 160 morphine units per six months.. That will be pretty standard. IF you have a need for more than that, it will have to be prescribed by a specialist in those medications, and you will pee.
FWIW programs like Louise got into have success rates in excess of 75%.
Congrats Louise. Good luck. It changed my life for the better 20 years ago.
Tired of pain said:
In Georgia, pain management is no more than the DEA trying bust people. One guy took a urine test. He was arrested because he had pot in his system. As fo r myself, I pee for no one!
Luckily, I have been with my primary for a very long time, nearly 20 years. They know I’m a nurse and I have worked with they office. Otherwise, I’d be seeing a specialist and peeing too. I do follow up with a PM doc every 4 months just to make sure I’m doing okay. Then he sends recommendations to my primary, which he then follows. My primary also does my monthly prescriptions.
The drug screens are not to be used to prosecute people, and I have never heard of doctors sharing private medical information with law enforcement. I think that would violate HIPPA. It’s an effort to prevent abuse and make sure that people aren’t obtaining prescriptions and then selling them.
Well, I know I’ve promised to keep you all updated on this programme but its only now that I’m beginning to get to grips with the process so it makes sense to me and for me.
Every session we have forms of exercise, basically simple movements and Tai Chi (everyone knows I love my tai chi!)
Now up to now I’ve been feeling that I may not actually be right for this course as I think I have come to terms with my chronic pain and live my life inspire of this…yes even the odd spot of pole dancing!
We have been learning and discussing why we let pain control us…basically our primeval instincts to prevent harm. Pain is bad for us, as such.
I feel that I’m past this and I exercise a lot, even when its painful because I know its beneficial to me.
This week (although I missed the course due to a tummy bug) I was sent the factsheets and its all starting to click…the mental thought processes we have because of our problem solving abilities our minds chuck up so many thoughts which are, in fact, so unhelpful in letting us get on with life.
Ask yourself how many times you’ve said to yourself “I’m so bloody useless!” or “You’re such a clutz!” We run ourselves down, we get frustrated with ourselves, we are so hard on ourselves, so negative about what we have become. Our thoughts are “fused” in this way and, lets face it, they’re not helpful and leave us feeling worse.
So now we will be looking at how we “defuse” our thoughts, how to realise and act on how we think. The aim will be to look at our thoughts not from them. To recognise that although we will always have theses type of thoughts we can accept them for what they are; thoughts, not us.
Now my head is starting to hurt lol.
All of the basis of these ideas are from a book by Steven Hayes called “Get out of your mind and into your life”
Wow this class is for sure doing good things for you! I remember an old discussion you had about being frustrated and upset at work. You were focused on recognizing what you couldn’t do anymore and I can see a total refocused person now. I love that you continue to share your thoughts and insights with us all. Wishing you continue inner peace on your journey!
Next instalment Rachael lol
Today I’ve sort of hit the payload, light bulb moment…
This is painful and has made me cry this morning but I’m going to run through what I discovered.
We were given a worksheet called “Passengers on the Bus” We have had a lot of discussion on values and goal. This worksheet was for values and as I returned to do a short work shift in the morning work values are forefront in my mind.
So a value for me is to stay in work ( although this is also a long term goal too)
So I had to put all my thoughts in my head about work, those thoughts that are like the critical part of us.
My sheet had a picture of a bus with monsters in it and each monster has a speech bubble, we have to add in the thoughts to the bubbles and this is what I got
Your pain is less worthy of note than others pain
You’re a fraud
You need to work harder to show others you have worth
You need to be better than all the others
You’re a burden to the team
Your tears show that your weak
Why cant you cope with the stress
Being off sick shows you’re weak
Being stressed shows you’re weak
You have to take on everything
You shouldn’t say no!
These type of thoughts I’ve always pushed to the back of my mind, ignored when I can, they can come and haunt me when I cant sleep.
It shocked me and, I as the driver of this bus I want to drive it over the cliff and jump out at the last minute. But we’ve been taught in this course that, try as we might, there is no magic way to banish these type of thoughts we need to face then …this is the FIRST time I’ve really opened up and let these thoughts out and not tried to push them away.
The running theme in my thoughts?
Well to me it says I don’t feel worthy, my self worth is seriously lacking!
So what are we to do about it? We need to stand back and be our observer self, you know the one that watches, slightly detached and ask is this a helpful though?
There are many ways to intercede your emotional thoughts and one that I’m trying out is the…thank you mind for telling me this but sorry I’m not buying it!
I know many reasons why I have these thoughts and I’ve spent a few hours using my observer self to look at painful memories in my past that I have interpreted as making me feel unworthy. The thing I need to do now is to make a choice on how I deal with these thoughts in the future.
I’m sorry if this doesn’t make sense but to me its a break thought to voice these thoughts in a structured way.
Ok, reading this at 4:45am, yes I am up at this stupid time every morning, but I do get at least 70% of what you are saying. The monsters on the bus are a little confusing at this hour and will have to reread this later but I love the depth you are taking! There is no easy way out and we are our worst critics as we read further into even what other negative comments come our way. You will always feel less worthy by others actions when you base your worth on their interaction intentional or not. Deep stuff hang in there and I get the enlightenment we can never gix ourselves until we know what’s broken inside. I still see a changed woman here, good for you keep on going!! Ready for your next level, insert smily face here!
Louise, it make SO much sense and I want to reach out and give you a hug. You are working so hard at this, and I admire the way that you are able to be so candid with us. No doubt it helps you to clarify what is going on in your mind, but it is making me rethink some of my “monsters” as well. How can we thank you enough for sharing this with us? (OK, I suppose a round trip ticket to a luxury spa in Bali would be a good start, but we both know that ain’t happening. LOL) Like Rachael, I too see a changed woman emerging here. You go and grow, girl!
Thanks girls,
The thing about the bus is, we drive it and like all our lives, our journey, we pick up passengers along the way. These passengers are our thoughts from our experiences some are nice and pleasant some are cruel and rude, thoroughly nasty passengers. Its us, the driver, who choses to either listen to them and deviate from where we want to go or we tell them to “button it”, its our choice
Must say the Bali trip sounds good Seenie and if I ever win the lottery…we’re going!!
OK, we'll make a pact then, Louise! If I ever win the lottery, we'll go to Bali. Maybe we'll take a few PsA friends with us!
Hello my friends,
I realise that I’ve been MIA for a long time, but I’ve been working hard on this programme, with the last session being last week.
I’ve been wracking my brain on how to best pass on some of the guidance and I’ve realise its just too deep, too far reaching for me to do it justice. Not everyone feels about this course of action the same as I do as its not an easy route to follow. Only 8 out of the 12 or so starters finish the course, out of those that finish only half felt it had been helpful. I honestly don’t think it was the fault of the course or the staff but of those people on the course…it simply wasn’t for them, they were not willing to let go and accept the course.
If you google Acceptance and Commitment therapy (ACT) and find a reputable site you will get an idea of the whole ethos of the pain management programme which are based on this therapy. To take the whole plunge into it I can recommend the work book the course I was on used as a guideline. Its called “Living Beyond Your Pain” by Joanne Dahl and Tobias Lundgrun. Its on Amazon for about £20 but from different sellers I got mine for £8.68 through Amazon.
Happy reading to anyone who chooses to accept the challenge;)
Thanks for the information, Pookie! I might order the book, even though my pain isn't unbearable and it varies a lot, so most of the time I can ignore it or deal with it....sometimes with ibuprofen, ice packs or heating pads. My husband has more trouble dealing with his pain. I know the book will come in handy for him right now, and me most likely someday! I totally agree with the concept.
This is the book. Looks great:
http://www.goodreads.com/book/show/237724.Living_Beyond_Your_Pain
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Pookie said:
Hello my friends,
I realise that I’ve been MIA for a long time, but I’ve been working hard on this programme, with the last session being last week.
I’ve been wracking my brain on how to best pass on some of the guidance and I’ve realise its just too deep, too far reaching for me to do it justice. Not everyone feels about this course of action the same as I do as its not an easy route to follow. Only 8 out of the 12 or so starters finish the course, out of those that finish only half felt it had been helpful. I honestly don’t think it was the fault of the course or the staff but of those people on the course…it simply wasn’t for them, they were not willing to let go and accept the course.
If you google Acceptance and Commitment therapy (ACT) and find a reputable site you will get an idea of the whole ethos of the pain management programme which are based on this therapy. To take the whole plunge into it I can recommend the work book the course I was on used as a guideline. Its called “Living Beyond Your Pain” by Joanne Dahl and Tobias Lundgrun. Its on Amazon for about £20 but from different sellers I got mine for £8.68 through Amazon.
Happy reading to anyone who chooses to accept the challenge;)