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When a LifeLine Fails.

  • Outlast
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5 years 5 months ago #12589 by Outlast
Outlast created the topic: When a LifeLine Fails.
There are many obvious supportive aspects to this Forum. It is a valuable aid in hearing about new medications or treatments. It is a place to vent about Workers Compensation, off handed Gps or the many people who seem to be an authority on all things medical yet are woefully uninformed about chronic pain and the misery that increasingly grows with it. The forum naturally brings people with similar problems together to lean on each other when in despair or rejoice at the smallest of improvements. There is the wonderful colour that Di has brought with her and the sage advice of our moderators. There are conditions i do not comment on like migraine or CPRS because my input would be superficial so i read and remain quiet. And there are times when i wonder do some members actually get the deeply significant pain of failed surgery or the look in the eyes of a surgeon who says there is nothing else to be done and good luck with your life. And then i have to stop because that, I have learnt is unfair. I learned that everyone's pain experience is theirs to own and evaluate its impact on their life.
To those like Eliza and myself who live alone there are many times when we have participated and many when our isolation is too much to become involved but instead just quietly drop in and see what's happening. Sometimes this is enough. For me today it was not. It was a horrible day of pain and emotion. I seemed to have crossed some permanent line that my pain has beaten me. Not one of Acceptance just one of having been defeated by a foe more worthy and resilient than i. Today I needed to know the Forum was there. It was not. Please let there not be a repeat.
The following user(s) said Thank You: Mary, Eliza

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5 years 5 months ago #12591 by BIY
BIY replied the topic: When a LifeLine Fails.
Hi Outlast,

So sorry to hear that you have had a tough day. Sending you a hug. Peter and Mary have contacted the webmaster and are awaiting a fix, but it is beyond the moderator's expertise unfortunately :'(

There are so many of us to whom this forum is a lifeline and it's been really unfortunate that while the rest of the CPA site was being updated, something else (the forum) came undone.

I'm so sorry to hear your pain levels are intense at the moment. I can empathise with the despair that goes with those unrelenting levels as that's how it was for me with my jaw over the months leading up to Christmas. I thought there was no hope of relief as I thought all painkillers had been exhausted, but then came across Norspan which has brought it down to manageable level. I just wanted to encourage you that you are not alone in going through times when it seems all is hopeless, but sometimes, something new can pop up to change the situation. I know that you are already on Norspan, but I just wanted to encourage you that I thought I had run out of options and then that came along.

And you're right; I can't imagine the pain of failed back surgery and how painful that is for you to live with. But also, people find it hard to relate to my jaw pain and how all consuming that can be when it's bad nor can a lot understand what it is like to have to limit talking when that is just a natural thing for most people to be able to do freely and unrestrictedly.

I guess the point at which we all meet is that no matter where or what our pain is, it has disrupted our lives and we are not able to function in the way we used to.

I just wanted to encourage you too that you aren't alone in feeling lonely...the reason I am on the forum right now is because I am feeling exactly that. I am home alone while my husband is out at a party playing in his band...the type of partiy I used to go to see him play at and dance to his music, but can't now because of my CP.

I send you great big empathetic hugs Outlast. You're not alone mate and, in fact, when I opened up the forum and saw you were online, that's why I logged in because I was rapt to see that I wasn't the only one around so I needed your company too; thank you for not making me feel so lonely.

Hugs,
Fee

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5 years 5 months ago #12592 by Outlast
Outlast replied the topic: When a LifeLine Fails.
hi fee. Yes you are up late. Thanks for the hugs, came at a good time. The most obvious thing i learnt from the Forum is the diverse nature of injuries and ailments that people have. Before this Forum i would shake my head at people who had never had surgery. To me that was the Gold standard of pain . It was like if a surgeon hasn't offered to take a scapel to you then you can't be too bad. Now i am wiser and more informed. You like everyone here pays an ongoing price for CP like you staying home tonight is probably nothing compared to not talking freely because of TMJ . I would be seriously ticked off in your shoes. Its good to know that you have someone to come through your door tonight even if beer and cigarette aroma comes with it. Its good how you acknowledge his presence being such a positive in your life. Not everyone does that and should take note.
I have been through so more flare ups and acute stages than i could count but always felt that I was always the one (except for depression years) that would hold the upper hand. Something has changed and it will take some getting used to. I cannot believe i even wrote that. after all these years with pain Fee and it still has the ability to trip me up. I really feel for our younger members who must be bewildered by it all. I hope they are all getting counselling of some sort. Not saying us older ones deserve less but it seems just nastier for the young to have it.
Thanks Fee. you seem to come a long way within yourself from when i first joined. Better not lose our history because reflection can be good.

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5 years 5 months ago #12593 by BIY
BIY replied the topic: When a LifeLine Fails.
More hugs coming your way Outlast.

Gentle bear hugs,
Fee
The following user(s) said Thank You: Outlast

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5 years 5 months ago #12594 by Outlast
Outlast replied the topic: When a LifeLine Fails.
Nite Fee. Your man can't be too far away. lindsay.

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5 years 5 months ago #12597 by Mary
Mary replied the topic: When a LifeLine Fails.
Hi Outlast,

Sorry to hear that you are having such a rough patch. I have FBSS too, so I can truly empathise with what you are going through. You just cannot get on top of this beast at times, no matter how hard to follow the principles, it will come up and rear its ugly head again in triumph. I hope that this episode doesn't last too long for you.

Do you have a flare up plan? I have a kind of loose one, but it is difficult to follow unless I don't have to be anywhere or do anything much for about 3 days. I can take 25mg extra Lyrica, sometimes a small amount of valium if I have a lot of spasms and then I try and do nothing much for 3 days. I also need to take a sleeping tablet on those nights because 3 nights adequate sleep is part of the plan and because I haven't done much during the day time (except make sure I don't sit too long - LOL) I am not always tired enough despite the pain. This plan is my invention (and therefore would probably be useless for anyone else) and because is is usually hard to find 3 days where I don't have to do something or be somewhere, I tend to muddle on a bit. If I get back to 3-4/10 then it is fine with me. I know that you once said that a score of 3-4/10 on a good day is not good enough. It is for me because sometimes it can be less if I am not moving around. So it may be less for some of the day. The worst days are when it gets up much higher.

You are right though, anyone who hasn't lived with this rotten thing called chronic pain can even begin to relate to what we all go through. Sometimes I wish they would give it another name so that people don't equate it with the headache that they get once/week or the acute back pain that they get a few times/year. I used to have that until I listened to a well meaning physiotherapist who told me I needed facet joint injections and I would be ok. I still think that my CP may have started after those and been exacerbated by the surgery. It doesn't really matter now anyway.

I really hope that today is a better one for you.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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