Sending you a quick recovery from your 'flare'. As a CP back pain suffer as well, I can sympathise with you and understand how debilitating and frustrating it can seem. Please know that you are not alone and that I am sending a positive "healing' blessing your way.
As we have lost the forum info, I am not sure of your history. Please excuse my ignorance, but what have you had done and why can't the 'Specialists' help you?
I completely understand your frustration with 'Specialists'. I had no pain prior to my surgery for Scoliosis. The surgeon convinced me it would get worse...yeah the pain did. Now they say the fusion and rods they inserted to my spine are probably why i am in pain and i should have them removed!
Anyway, I hope you are feeling better soon. You take care now.
"You never really understand a person until you consider things from his point of view - until you climb into his skin and walk around in it."
Atticus Finch - To Kill A Mockingbird
grappers replied the topic: When a LifeLine Fails.
Hey Outlast you know you are not alone, you may be isolated and keep to yourself, that in itself can be a blessing sometimes and very lonely at others, but do have this forum and many friends and fellow sufferers who understand.
I have a feeling going through your heart attack has changed how you think about life in general at the moment, I know for me I did a whole lot of sole searching, and there was a lot of feelings of why me I kept fit and active. Then having another heart attack after becoming a CPer, my body seemed to experience more pain than usual, whether this has anything to do with the central nervous system I don't know, but it could explain why you are having flare ups, mine did settle after awhile.
I must admit I had high anxiety levels as well and that was not helping either with pain levels, unless you have had a heart attack and been at deaths door you can not understand all the feelings that go on inside your head and body and I think that you may have hit that door at the moment and being on your own with no one to talk to about how you feel and keeping it all bottled inside is having an affect on your pain levels. Just a thought.
Mate, I feel your pain Brother. It is indeed difficult to cope when you live on your own without a soul to assist you in anyway at all. I have also been alone with zero adult support for many years, raising my children also.
There are many sufferers of CP on this site who have no family or support. So don't feel like you are out on limb without anyone being there to chat to, because my friend, that limb is overloaded with people like us.
Unfortunately, the forum gremlins decided to call a stop work meeting, then all the gremlins decided they were going to conduct a work to rule, until they got what they wanted. And because I don't understand gremlin language, who would know what they want. so we just have to suffer this until our webmaster can pull the little blighters back into gear.
We haven't lost the forum altogether, so that means we can still keep posting and talking. The moderators are going to put back up some of the old thread titles and we will be scrapping some of these new threads. .this will bring about some familiarity for all of us and the forum will look similar to what it use to look.
please be patient and hopefully we will have things back in order soon.
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
Thankyou to Mary, Raphael, Di and Don for your kind words and thoughts and hugs.
I will survive as per the hundreds or thousands of times of angst before. That's what Cpers do. We survive when we should be living. Our minds are filled up in the early stages of our injury or disease by thoughts of cure and treatments. We lose the ability to live each day but rather we are fighting ourselves each day. Life seems to be happening somewhere out there while we wait for appointments or the big magical day of surgery when all will be fixed for ever. Only it doesn't. And that was years ago.
And i thank you Mary for putting me on the path of not rushing around like a bull at a gate so as to minimize flare ups. My flare up plan did not actually have a format it is just lots pain killers and some sedatives because i become a bit agitated. Off to bed and hopefully sleep to relieve my mind more than anything of the continual pressure it is under to cope every day. You are right about the term"chronic pain" having lost its significance. There are so many people with daily aches and pains or aging pains that confuse the issue. Yesterday was not so much about a flare up as a recognition of failure. I am a male baby boomer. Lots of us learnt to fight physically in our teens like stupid young men do. Fought hard and won and lost. No boots and knives in those days and certainly no kicking someone when they were down. But Chronic pain does kick you when you are down. It attacks you at you most vulnerable moment and shows no mercy in doing so. It is a dirty fighter. A coward that sneaks up on you and hits you from behind and then stays around to gloat.
I suspect Don is close and i hadn't realised it. Having had the heart attack and then another i should have realised i was vulnerable. And given it is the small arteries that spasm and clot there is nothing to be done except take pills and try not to think of possibilities. So with years of pain and a realisation that my younger good years were snatched by Cp i have to reframe my thinking to make the best out of what life is ahead. Yesterday was about attitude and quite honestly i have had enough of manning up and toughening it out. But given there is no alternative we all plod on. It didn't help to have my chronic alcoholic brother keep asking for my Will and Burial Details. He is such a moron. Lot to be said for being an orphan.
Angela. As Mary says after a while it doesn't matter what causes your injury and chronic pain, only that you have it. There is nothing that can be done for me surgically and i think you and any Cper should give serious thought to any surgery further making your condition worse in the long run. If your condition is genetic or progressive you don't have much alternative but do as the surgeon suggests if you trust that person completely. As for removal of rods and screws in your back my experience is that of much improvement without them. I didn't like them in there and i am sure that such large foreign bodies as those are better out than in if healing is complete. My surgeon found vast areas of scar tissue caused by the hardware which then had to be cleaned up. I think your surgeon is right and anyway you don't have the recovery nightmare like when they put them in. Totally different mind space for the removal.
So thankyou all and onwards to another year of self discovery and hopefully rediscovery of some of life's joys.
It doesn't matter how resilient we have come to be, sometimes the pain and isolation can get to you, you are not alone in that. I have my (what I call good and bad days) days where I just want to hide under the covers "Doona Therapy". I used to call a Sickie A "mental Health Care Day" I'm sorry to hear your not doing well. Your right about the fact I drop in and out of the forum...Some days I feel I have nothing positive to say because of the pain and the emotional state i'm in....Fee was talking about her guilt in another post about her husband and how hard that is not being even able to kiss or dance or enjoy her husbands company playing in the band. Fee, at least he's by your side, 2 people need not talk to enjoy each others company, sometimes, silence is golden if you know what I mean. However I do understand where you're coming from and it must be so very hard for you Fee!
Emotional support is what I don't have and thats what I need most...
to know you all care can put me in a better space! Or to know someone's there when I need it most.
Hey Outlast you were talking about family in your other post and I can say luckily I do have my brother and sister in law who I have become close to, however they can't help me make the decisions I need to make now and about my future, only I can make those. My sister I am estranged from she stole every last cent out of my mothers bank account and we didn't find out until she passed away...How she can live with that I don't know!
I'm so darn chronically fatigued that decisions don't come easily i'm afraid...
Last night my neighbours had a party and I was invited though I didn't attend because I can't sit for long nor do I know their friends...Oh and I can't stand screaming kids or loud noise CP has affected me in so many ways! I just sat on my deck on my own sipping some champers pretending I was having some kind of celebration of "well this is what it has come too" me always in pain with constant feet n leg problems...aching muscles,twitching,electrical throbbing etc etc etc. Whats next "bring it on"....lol...Sitting is a problem so how could I ever go on a date...lol. Even getting up and down doesn't help much, I have to walk around a bit...I would look like a bit of a nutter getting up and down...lol...
Trying to move on is the hardest part with my life now, i'm heading in a different direction to one of work and holidays, however my solicitor just told me to go and have a holiday he said it will be OK!
I've just come across a cheap fare to Bali from Syd and I want to go and theres goes that mind of mine again...will I, won't I...blah blah blah...lol. It would be easy to make that decision if I had a friend to go with because I know someone would be there with me to enjoy the daily massages (I need) and the food and snorkelling. Going on my own just doesn't cut it for me. I have been on my own before however I was fit and healthy. Everybody needs a holiday whether they work or don't work. I especially want to see this person there who is a expert masseuse and who didn't want me to go ahead and have the operation. He is expensive about the same price as here though totally worth the money. i used to walk out floating on air with a feeling of therapeutic calmness of body and mind! He gave me a set of exercises that he had hoped would help me though back to work I went and I probably did more damage by trying to get through those 2 years because the pain tripled until I went off work for my op just over 2 years ago. My injury is 4 years young now!
So Outlast it is nice to have this forum and dear members and I'd have to say I agree with Don your heart attack has maybe provoked some soul searching?? thats where I'm at.... At least you have made a great start by giving up the ciggies...
Oh and I took a whole Avanza like Fee mentioned that less is more in her other post. And I was like a zombie all the next day! lol...will that pass if I stick with it? I have tried nearly all the other ones and they don't agree with me. You know I don't think I ever really knew what depression was, until now! It's a bugger, it creeps up on me and then low and behold I feel down and sorry for myself being in this condition. And so so lonely!
I'm hoping your pain levels are down a bit today...Iv'e just been sitting too long so I'm off for a walk in my garden that always lifts my mood!