Hi Keeping Pacers, after Kevin mentioned the blog at pain group today I thought I'd have a go at blogging! Found group very enjoyable today and will be thinking of possible ideas for the next art session, any suggestions....tracey?
Hi all, thought after we talked about the blog in todays meeting, I would just put a quick hello! Hope every one is keeping well, and will hopefully see some of you at Haskins on the 7th Feb. Rye ( I was the guy with a stick and wearing a pink shirt at the table at the back today)
Found this on a pain support forum, its designed to be given to friends and family. Really sums things up quite well I think, thought i'd share it with keeping pace...
"Please understand that being in pain doesn't mean I am still not a human being. I have to spend most of my day with this pain and I probably don't seem like much fun to be with, but I am still me within this body. Please understand the difference between being `happy` and `healthy`. When you have the flu you probably feel miserable with it, but I have been in this pain for years and I cannot be miserable all the time. In fact I work hard at NOT being miserable, so if you are talking to me and I sound happy, it means I am happy. That's all. It doesn't mean that I am not in a lot of pain or extremely tired or that I am getting better, or any of those things. Please don't say "Oh you are sounding better". I am not sounding better, I am sounding happy. Please understand that being able to walk for 10 minutes doesn't necessarily mean I can walk for 20 minutes. And just because I managed to walk for 20 minutes today doesn't mean I can walk the same today. It is just as confusing for me as it is for you. Please understand my pain is variable. It is quite possible that one day I am able to walk to the park and back whilst the next day I will have trouble getting to the kitchen. Please therefore don't attack me when I am in pain one day and you say "But you did it before". If you want me to do something then ask if I can. In a similar vein I may need to cancel an invitation at the last minute and if this happens, do not take it personally. Please understand that getting out and doing things does not make me feel better - it can often make things much worse. My pain can cause secondary depression (wouldn't YOU get depressed if you were hurting all the time?), but it is not created by depression. Please understand that if I say I have to sit down/take these pills now, that I have to do it right now and it cannot be put off because I am out for the day or whatever. If you want to suggest a cure for me.......don't. It is not because I don't appreciate the thought and it is not because I don't want to get well, it is because I have had almost every single one of my friends suggest something at one point or another. You can try them all then realise you are using up so much energy trying things that can even make you worse. In many ways I depend on others who are not in pain......sometimes I need help with the shopping, cooking or cleaning. I may need the help of the doctor or physiotherapist. I may need people at different levels, they are my link to the outside world, and as much as possible I need you to help me.
Did anyone see BBC2 on January 31st "the secret world of pain"? I felt very emotional watching it but it was also very positive to hear about the new research and potential developments in treatments. I wonder if it would be possible for us to download on iplayer and watch it at a meeting?
yes I reckon it would interest a lot of people (if they haven't already seen it of course) the whole thing is interesting but there is a section towards the end that was specifically about chronic pain which showed some ground breaking discoveries relating to an area of the brain that is malfunctioning in CP; also a potential treatment for it! (emotional!!!) Perhaps it would be good if you could download/burn it onto CD and then maybe we could watch the most relevant parts of it at a meeting with a medical professional there to talk about the findings? They have also identified a gene that is responsible for pain which could lead to new medications etc. KC see what you think of it once you have watched it.
rye I thought the quote you posted 27th January was great, perhaps the group should see it in a future newsletter?
I have also thought of making a scrapbook to have in the library of newspaper and magazine articles that people come across. They could be stuck/put in a folder so that everyone can read them. I'm sure lots of us read interesting and relevant articles which may be beneficial to share with all the keeping pace crew!
Anyway...that's enough from me for now, I'm glad you told me how to blog!
Tracey, I like the scrapbook idea, in fact there was an article that D picked up last week, "Researchers have found that by altering a sugar found in shells they were able to patch up damaged nerve cells in the spinal cord". (These are shells of a sea creature)I was going to try and follow this one up, but anyway it could be your first in the book.# It's great that a few of you are actually using the blog, makes it worthwhile keeping it going. Have a good day KPBloggers
Thought i'd give this blog thing a whirl and get into the 21st C. yep I agree that scrap book would be useful. Also like the idea of seeing relevent section of BBC prog at meeting (I don't have a TV). Like Tracey I thought the article you posted Rye was very useful, it even made me smile as I realised it was about ME!!! I'll go back and follow Ryes advice in a mo so that I can get my own tag - Miss Terry
Hey all, me again. lol. Tracey your scrapbook idea is great! So will definately look out for anything that might be useful to put in one. Come across quite a few things I really think are interesting in my endless search for answers! lol!
All Take care, and hopefully see some of you at haskins!
Hey there, It has been suggested that I attend your Keeping Pace group, by the pain management team at the Adelaide centre, and I am looking forward to the next meet on the Sept 15th. Up until now I have only met 5 other people that suffer with chronic pain for different reasons, so I think it will be a huge benefit to me to know that there are others out there. I am suffering with both depression (long term) and chronic pain for about three years. I too started to write a blog back in July 2011, and have found it to be really good for me to express myself. I would also like to think it is a window for others with similar issues, who quite often remain unheard. Since the Pain Management sessions finished I have felt a bit lost, and feel that your group can fill that space. I will look forward to joining you all.
Hi Sharon Welcome to the KP (hardly used) blog. It will be good for you to join us at the meeting this month, I'm sure you will enjoy it. You've seen the website so you know what we are about, we are easy going and hopefully you will find us very welcoming. Take care
I attended my first session with you guys yesterday 15th Sept, and I really enjoyed it. I wasn't really sure about what to expect, but I am so pleased that I made the effort to go along. I was made to feel very welcome, and part of the group so thanks to all of you for that. I thought that Fran was absolutely brilliant and amazing. I don't know what her story is, but she was truelly inspirational. The chanting was fantastic, I wasn't expecting to be singing yesterday, but I am glad that I found my voice and joined in. It was so uplifting and really put me in a good mood for the rest of the day. I will definitely see you all again next month. By the way, my blog address is: http://sharon-honestlyspeaking.blogspot.com
Sharon
PS. I have just read the post that Rye added on 27th Jan, which is brilliant, I have printed it off and will put it somewhere, where all can see it!
Hi Sharon Glad you came along on Thursday. I was the lady with the little girl, hopefully I'll get to chat to you next time. I have been going to KPWP group for some time now and I find it really helpful and comforting to be with other people who truly understand what it is like to live with chronic pain. Take care Traceyxx
Well Sharon, you have succeeded in making me read the blog (and blog myself!) Even though I told you at the meeting that I don't! It was good to meet up with you and I'm sure the group will benefit from getting to know you more. Norma x PS: Confession - I hadn't read Rye's post before but I have now copied it out as I'm sure I will be handing it on to folks that I meet.
Looking forward to seeing you all again on the 20th, I have told a couple of friend from my mindfulness group about you, so they may be coming along as well.
Hi all, Sorry not been around for the last couple of meetings. Been in the grips of an awful flare, however I'm slowly but surely coming out the other side, hopefully at least. I'm sorry to hear we've lost some funding. I was wondering if I'm up to it, about me doing a spot of baking for meetings & asking for donations to add to the funds? Maybe making mince pies to sell at our Christmas meeting? It's a bit late in the year for Xmas cakes but that's a thought for next year? Hope your all well & I should be at next meeting with cakes in tow.
Rye Hi, sorry you've not been too good, hopefully coming through it now. Good idea on the cake front, people are bringing craft items with them this month with a view to selling them and donating some of the money to the KP fund. Have a look at Octobers Ramblings which explains the November & December Meetings. Take care Kev
Sorry I haven't been around lately, not been great for a while. I check in on the website now and then and saw that Solent NHS Trust came to the group last month. I've been involved with the trust for a while now, setting up a project to recruit younger members & I am standing election for Governor. I hope to come back to group soon, but you all know what its like, no matter what plans you make if your not up to it on the day.... Well I hope your all well, and look forward to seeing you soon.
Rye You have been missed, we all wondered what had happened. I do agree with not knowing how you are going to feel on a certain day though. The NHS trust talk was very good and very best of luck with the Governor position. We certainly hope to see you soon. Take care Kevin
Hi Keeping Pace
ReplyDeleteI see how it works now!!
ReplyDeleteHi Keeping Pacers, after Kevin mentioned the blog at pain group today I thought I'd have a go at blogging! Found group very enjoyable today and will be thinking of possible ideas for the next art session, any suggestions....tracey?
ReplyDeleteHi all, thought after we talked about the blog in todays meeting, I would just put a quick hello! Hope every one is keeping well, and will hopefully see some of you at Haskins on the 7th Feb. Rye ( I was the guy with a stick and wearing a pink shirt at the table at the back today)
ReplyDeleteHey, you guys great to hear from you, lets hope everyone else can see how easy it is to comment.
ReplyDeleteThis is easier than I thought. ( I had to post a blog because Kevin told me too ) Norma
ReplyDeleteSo Kc and Rye, how do I get a blog name? tracey
ReplyDeleteey up tracey, if you look in the top right hand corner and click create blog. follow the steps and you will get a blog name.Rye
ReplyDeleteFound this on a pain support forum, its designed to be given to friends and family. Really sums things up quite well I think, thought i'd share it with keeping pace...
ReplyDelete"Please understand that being in pain doesn't mean I am still not a human being. I have to spend most of my day with this pain and I probably don't seem like much fun to be with, but I am still me within this body.
Please understand the difference between being `happy` and `healthy`. When you have the flu you probably feel miserable with it, but I have been in this pain for years and I cannot be miserable all the time. In fact I work hard at NOT being miserable, so if you are talking to me and I sound happy, it means I am happy. That's all. It doesn't mean that I am not in a lot of pain or extremely tired or that I am getting better, or any of those things. Please don't say "Oh you are sounding better". I am not sounding better, I am sounding happy.
Please understand that being able to walk for 10 minutes doesn't necessarily mean I can walk for 20 minutes. And just because I managed to walk for 20 minutes today doesn't mean I can walk the same today. It is just as confusing for me as it is for you.
Please understand my pain is variable. It is quite possible that one day I am able to walk to the park and back whilst the next day I will have trouble getting to the kitchen. Please therefore don't attack me when I am in pain one day and you say "But you did it before". If you want me to do something then ask if I can. In a similar vein I may need to cancel an invitation at the last minute and if this happens, do not take it personally.
Please understand that getting out and doing things does not make me feel better - it can often make things much worse. My pain can cause secondary depression (wouldn't YOU get depressed if you were hurting all the time?), but it is not created by depression.
Please understand that if I say I have to sit down/take these pills now, that I have to do it right now and it cannot be put off because I am out for the day or whatever.
If you want to suggest a cure for me.......don't. It is not because I don't appreciate the thought and it is not because I don't want to get well, it is because I have had almost every single one of my friends suggest something at one point or another. You can try them all then realise you are using up so much energy trying things that can even make you worse.
In many ways I depend on others who are not in pain......sometimes I need help with the shopping, cooking or cleaning. I may need the help of the doctor or physiotherapist. I may need people at different levels, they are my link to the outside world, and as much as possible I need you to help me.
Rye
Did anyone see BBC2 on January 31st "the secret world of pain"? I felt very emotional watching it but it was also very positive to hear about the new research and potential developments in treatments. I wonder if it would be possible for us to download on iplayer and watch it at a meeting?
ReplyDeleteTracey, I didn't watch it last nigght but recorded it, so I could burn a DVD if you think it would be interesting for the rest of the group.
ReplyDeleteHi, I recorded it and reasons known only to itself my plus box failed to record it, so I would be very interested to see it.
ReplyDeleteRye
yes I reckon it would interest a lot of people (if they haven't already seen it of course) the whole thing is interesting but there is a section towards the end that was specifically about chronic pain which showed some ground breaking discoveries relating to an area of the brain that is malfunctioning in CP; also a potential treatment for it! (emotional!!!) Perhaps it would be good if you could download/burn it onto CD and then maybe we could watch the most relevant parts of it at a meeting with a medical professional there to talk about the findings? They have also identified a gene that is responsible for pain which could lead to new medications etc. KC see what you think of it once you have watched it.
ReplyDeleterye I thought the quote you posted 27th January was great, perhaps the group should see it in a future newsletter?
I have also thought of making a scrapbook to have in the library of newspaper and magazine articles that people come across. They could be stuck/put in a folder so that everyone can read them. I'm sure lots of us read interesting and relevant articles which may be beneficial to share with all the keeping pace crew!
Anyway...that's enough from me for now, I'm glad you told me how to blog!
Tracey, I like the scrapbook idea, in fact there was an article that D picked up last week, "Researchers have found that by altering a sugar found in shells they were able to patch up damaged nerve cells in the spinal cord".
ReplyDelete(These are shells of a sea creature)I was going to try and follow this one up, but anyway it could be your first in the book.#
It's great that a few of you are actually using the blog, makes it worthwhile keeping it going.
Have a good day KPBloggers
Thought i'd give this blog thing a whirl and get into the 21st C.
ReplyDeleteyep I agree that scrap book would be useful. Also like the idea of seeing relevent section of BBC prog at meeting (I don't have a TV). Like Tracey I thought the article you posted Rye was very useful, it even made me smile as I realised it was about ME!!!
I'll go back and follow Ryes advice in a mo so that I can get my own tag - Miss Terry
Hey all, me again. lol. Tracey your scrapbook idea is great! So will definately look out for anything that might be useful to put in one. Come across quite a few things I really think are interesting in my endless search for answers! lol!
ReplyDeleteAll Take care, and hopefully see some of you at haskins!
Rye
Hey there,
ReplyDeleteIt has been suggested that I attend your Keeping Pace group, by the pain management team at the Adelaide centre, and I am looking forward to the next meet on the Sept 15th. Up until now I have only met 5 other people that suffer with chronic pain for different reasons, so I think it will be a huge benefit to me to know that there are others out there. I am suffering with both depression (long term) and chronic pain for about three years. I too started to write a blog back in July 2011, and have found it to be really good for me to express myself. I would also like to think it is a window for others with similar issues, who quite often remain unheard. Since the Pain Management sessions finished I have felt a bit lost, and feel that your group can fill that space. I will look forward to joining you all.
Sharon Carter-Wray
Hi Sharon
ReplyDeleteWelcome to the KP (hardly used) blog.
It will be good for you to join us at the meeting this month, I'm sure you will enjoy it. You've seen the website so you know what we are about, we are easy going and hopefully you will find us very welcoming.
Take care
Hey all.
ReplyDeleteI attended my first session with you guys yesterday 15th Sept, and I really enjoyed it. I wasn't really sure about what to expect, but I am so pleased that I made the effort to go along. I was made to feel very welcome, and part of the group so thanks to all of you for that. I thought that Fran was absolutely brilliant and amazing. I don't know what her story is, but she was truelly inspirational. The chanting was fantastic, I wasn't expecting to be singing yesterday, but I am glad that I found my voice and joined in. It was so uplifting and really put me in a good mood for the rest of the day. I will definitely see you all again next month. By the way, my blog address is: http://sharon-honestlyspeaking.blogspot.com
Sharon
PS. I have just read the post that Rye added on 27th Jan, which is brilliant, I have printed it off and will put it somewhere, where all can see it!
Hi Sharon
ReplyDeleteGlad you came along on Thursday. I was the lady with the little girl, hopefully I'll get to chat to you next time. I have been going to KPWP group for some time now and I find it really helpful and comforting to be with other people who truly understand what it is like to live with chronic pain.
Take care
Traceyxx
Well Sharon, you have succeeded in making me read the blog (and blog myself!) Even though I told you at the meeting that I don't!
ReplyDeleteIt was good to meet up with you and I'm sure the group will benefit from getting to know you more. Norma x
PS: Confession - I hadn't read Rye's post before but I have now copied it out as I'm sure I will be handing it on to folks that I meet.
Looking forward to seeing you all again on the 20th, I have told a couple of friend from my mindfulness group about you, so they may be coming along as well.
ReplyDeleteSharon
Yes and you Sharon, doesn't it come round quick. It will be great if your friends can join us, the more the merrier.
ReplyDeleteKevin
Hi all,
ReplyDeleteSorry not been around for the last couple of meetings. Been in the grips of an awful flare, however I'm slowly but surely coming out the other side, hopefully at least. I'm sorry to hear we've lost some funding. I was wondering if I'm up to it, about me doing a spot of baking for meetings & asking for donations to add to the funds? Maybe making mince pies to sell at our Christmas meeting? It's a bit late in the year for Xmas cakes but that's a thought for next year?
Hope your all well & I should be at next meeting with cakes in tow.
Best wishes, Rye
Rye
ReplyDeleteHi, sorry you've not been too good, hopefully coming through it now. Good idea on the cake front, people are bringing craft items with them this month with a view to selling them and donating some of the money to the KP fund. Have a look at Octobers Ramblings which explains the November & December Meetings.
Take care
Kev
Hi all,
ReplyDeleteSorry I haven't been around lately, not been great for a while. I check in on the website now and then and saw that Solent NHS Trust came to the group last month. I've been involved with the trust for a while now, setting up a project to recruit younger members & I am standing election for Governor. I hope to come back to group soon, but you all know what its like, no matter what plans you make if your not up to it on the day.... Well I hope your all well, and look forward to seeing you soon.
Rye
Rye
DeleteYou have been missed, we all wondered what had happened. I do agree with not knowing how you are going to feel on a certain day though. The NHS trust talk was very good and very best of luck with the Governor position. We certainly hope to see you soon.
Take care
Kevin