View Full Version : sleep would be nice
Damn pains either don't allow me to fall asleep, or wake me up after an hour or so. Haven't found a sleep aid that helps. Nights are long and boring.
Alan
"Was it over when the Germans bombed Pearl Harbor?"
underdog
10-27-2003, 07:06 PM
Hey Alan,
Terrific article you wrote at painonline.
Best to you buddy. Most of us are not worthy to touch the ground you are not able to walk on.
Everyone read "Reality CP" by Alan.
Alan's landmark article is free, whereas I think it costs you 700 a year to read the journal where people claim we are exaggerating. Good deal, Alan!
I wanted to leave a comment but haven't thought of the right one yet.
[This message was edited by underdog on 10-28-03 at 06:23 AM.]
Stiggy
10-28-2003, 12:27 PM
I deal with this problem everynight alan.
If I could take this pain from you I would Alan..God Bless
"The Meaning of things lies not in things themselves,but in our attitude towards them"
duramater
10-28-2003, 01:48 PM
I agree it would be nice...I have an emergency appointment with my rheumatologist tomorrow...my pain has become intractable and now involving the thoracic level. I am losing sleep and along with that some patience for daily living. I have taken several narcotics and relaxants and they do not seem to have any effect on my pain...I get dopey, but I still hurt. I guess today I just got to the end of my ability to stand it. Sometimes at work it is just blinding...no more heroics....I GIVE!
Mary
Underdog,
Thanks for the flowers, but I'm no hero. Far from it. I realize full well that, even if I had spent the last 22 years feeling what I felt for the first month after my injury (nothing below the injury level), I still wouldn't be a "superquad" - that just isn't my personality. I hope I'd be as close to independent as other C-5's here, but who knows? Just as I can't say for sure what I'd be doing today if I never hit the unidentified floating object, I can't say for sure how I'd be if I was pain free.
I hope what I wrote helps. Since things keep intensifying, I keep adding to my copy. Maybe one day, I can add a final sentence - "pain gone."
Stiggy,
I wouldn't give this pain to you. What bad thing did you ever do to me? What would be nice would be to project it onto doctors for a week or so at a time - might get their urgency up. Maybe onto people who are against stem cell research, too.
Mary,
I understand not having patience for daily living. Nightly living, too. The worse the back gets, the less typing I'm able to do, since it prevents me from using my arms (this post took me a while.) And I lay on my back (or a pillow is pushed against it if I'm on my side) at night. I'm past ready for this nonsense part of SCI to end. Being comfortable, and able to go out, would be nice. So would sitting without feeling like the leaning tower of Pisa.
All,
I read in the central pain mailing list that the flare in sunspots can increase central pain. Maybe that explains my and Mary's worse back pain this week.
Alan
"Was it over when the Germans bombed Pearl Harbor?"
[This message was edited by alan on 10-28-03 at 10:50 PM.]
duramater
10-29-2003, 06:50 AM
Alan,
I suppose we should feel somewhat a phenomenon, if sun flares are making us hurt worse. I for one would prefer to be distinguished in other ways. I was thinking to myself at about 4 am after the narc haze wore off, that if you were there hurting worse than me, and I hurt as bad as you, I could not get out of bed anymore, and I could not imagine how I would manage such a feeling. As it is, I am reaching across my desk to type because for some reason this is the only wacky angle I can tolerate this morning. Too many people are asking me why I just don't go get the L-3 taken care of, fused and get on with it....I sit here thinking sure, then what about the C-5 which is technically worse?? And then someone needs to explain why breathing is becoming an issue for me now...for me the issue is that it is all hell bent on disintegrating, and yes there are things that I am doing to improve my situation but still it will always hurt me and while I am often able to be playful and imaginative...even that is getting too hard for me now. I love my job, and it is harming me. Patient care on my floor is heavy and demanding, many of the patients are total care for me and while I love it, they are heavy to move around and that is not helping my situation at all.
Well enough of my complaining, hopefully today my doctor will come up with something more useful than the current plan, hell, maybe she can just hit me with a mallet or something and it will all go away???? NO...we both know...nothing is that easy....so I have a feeling I am heading for neurontin, although as much of that as I give on my job, my patients are still hurting everyday....sigh...owwwwwww....have a good day Alan...I would take this pain twice as long if you could get a break one day. You deserve it.
Mary
Mary,
Is there any guarantee the fusion would help?
Overall, I'm disgusted. I keep getting worse (been unable to do ADLs for years), my mother isn't getting any younger (so who takes care of me down the road? I can't, nor can I get myself out of this world. How will I take care of the house? I can't concentrate on anything for more than a couple of minutes at a time, as I'm always distracted by burning, et al. And so on. Bah.)
Alan
"Was it over when the Germans bombed Pearl Harbor?"
duramater
10-30-2003, 07:17 PM
I am not fusing anything...I am taking all the drugs they give me and doing more stretches. I was ordered to have an MRI of my thoracic and lumbar spine. This will be my third L-spine, and my first T- spine. I am tired from a long day and just want to swallow my medicine and go to sleep.
Alan...I am long since past trying to encourage you by saying whatever it is I used to say. All I can say is that ....I don't know...I wish I had the answer for you, and I really care about what happens to you.
Take care as best you are able.
Mary
dejerine
10-31-2003, 12:37 AM
Dear Alan, I am one of your admirers. My daughter read "Reality CP" also and sat there the longest time without saying anything. That article is heartrending. In fact, at my very worst times, I often say this Alan person is sitting there worse, and this helps me through it. Sorry, but thanks. You must have made a lot of docs mad when you told them the meds they thought helped, weren't working. This can really tee a pain clinic off. I think they are used to a lot of people who want opiates being grateful for the pain relief it offers, because they sure get upset when you tell them it isn't helping the CP. Why can't you just be reasonable and be like the others (who didn't actually have CP), grateful for the oxycontin. Oxycontin makes people feel powerful when they give it and as Andrew Vachss has written, even more powerful when they withold it. This failure of oxycontin in severe CP reminds me of my old math professor, sort of an egghead, who said he couldn't understand why certain higher order differential equations would not commute since it was obviously to their advantage to do so.
As to giving docs a temporary case of CP, capsaicin just beneath the skin gives them just a touch of it, and those who try this, DO in fact start doing pain research. Dr. Coghill has cranked out a tremendous amount of stuff, getting ever better after just such an experience.
The amazing thing about Mother Theresa is that she was able to have such great empathy without experiencing what the poor experience. Yet, even she realized she needed that tie so she voluntarily became poor. I see postings that suggest pain docs try one little wheal of subQ capsaicin to release Substance P and set off allodynia, and I must say, I think it would astound and shock some of the clinicians to be informed in this fashion concerning what they have been treating. They would immediately stop comparing us to diabetic neuropathy.
Personally, I have just about had it with uneducated neurologists who pretend to know CP, but have never actually seen a case before me. This doesn't keep them from hinting condescendingly that I am weak however. If they only knew what it had taken just to get to the office and what a sacrifice it was to pay their bill. At that moment, I must confess I sometimes fantasize about a loaded syringe of capsaicin, and a couple of Tongans to hold the guy down. But I just listen to the patented pain admonishment speech and think how lucky we are to have the Wise Young's of this world.
I've pretty much given up on pain clinics - I've tried several over the years, obviously with no success (not their fault - several of the docs did want to help.) My GP is willing to let me try just about anything I suggest, so why waste Medicare's money on a specialist who won't do anything different than he does?
That spiel at painonline is what I took to every doctor. I still update it, in case I need it down the road. As I say, it isn't fully descriptive, since I can't really describe some of these sensations adequately. Burning, throbbing, cramped, etc., are just words I can come up with.
I agree it might get some of their butts in gear if the felt a smidgen of what we feel.
Alan
"Was it over when the Germans bombed Pearl Harbor?"
A comment - I love this site, but it's also depressing. I see C-5s (and higher level folks) doing all sorts of things, and I feel so incompetent being unable to do even some of those things. People actually have lives.
Alan
"Was it over when the Germans bombed Pearl Harbor?"
AngelaandKC
11-01-2003, 10:10 PM
Hi Alan,
*sigh* I can't even imagine your pain, but chuckle cause as an insomniac, who is now also dealing with SCI pain at night, you and I are probably up at the same time, wieling away at the same tv infomercials night after night after night. . .
I know it is probably no comfort to you, but I feel ya buddy, I feel ya.
calico
11-02-2003, 09:59 AM
Alan, I know you've probably tried this, but what helps me with sleep is Benadryl. If your pain levels are too high, though, I guess it still wouldn't knock you out enough. Then I know you have problems with drugs stopping up your plumbing. Wanted to mention this, just in case.
I'm sorry you're here with us, Alan, we all do care about you.
Calico
Benadryl used to help, but I guess I got tolerant to it after a while. It's useless now.
My sleep patterns are weird. If I manage to fall asleep within a half hour or so of turning out the lights, I'll sleep five, maybe six hours. The problem is being able to fall asleep. With all the fidgeting around trying to get comfortable (doesn't happen), and all the sensations, often I just can't fall asleep, and then I'm up all night.
Alan
"Was it over when the Germans bombed Pearl Harbor?"
calico
11-04-2003, 08:11 AM
Maybe because Benadryl used to help it might provide some clue to your doctor about something else that might help?
Did you keep upping the Benadryl and end up with side-effects?
I took as much Bendaryl as the doc would allow.
Alan
"Was it over when the Germans bombed Pearl Harbor?"
dejerine
11-06-2003, 09:17 AM
Dear Alan,
TO THE SCROOGES OF PSYCHIATRY, WHO HAVE SOMEHOW MANAGED TO LAND JOBS IN PAIN CLINICS:
You can either be like Mengele in Auschwitz and study us in macabre experiments, or you can get off your highhorses and help us! Why do you imagine that we even have the power to disclose what CP is like let alone exaggerate. Your minds are closed, so ANALYZE THIS!
______
I don't want to put words in your mouth, Alan but I found it extremely courageous that you were able to speak so directly in "Reality CP" at painonline.com I showed it to a bright person I know, thinking it would avoid my having to tell them how I was feeling, since they ask.
To my amazement, they said it "wasn't introspective". I replied that to have the courage to lay bare such feelings was almost beyond imagination, since we have all seen that if we attempt to tell people how we really feel, their reaction tends to be negative, not supportive. That is why I am so frosted as psychiatrists, who should know better, take the unenlightened tone of criticizing us for making our claims that we hurt. They need a psychiatrist a lot more than we do. We are prepared to face the truth, which is more than they are.
I am going to speak frankly here. There are times when I am not sure I can make it. These times sometimes come when they should not, like when someone tries to be nice and involve me in some activity to break the routine, like take me out. Sometimes that is when I feel worst as I really don't want to be there. Only in my very narrow existence, in my room, do I feel secure, that I can come out on top of the pain, and then, only if I quit trying to do anything.
In these postings, you are showing once again, your remarkable courage to really show how you feel. I hope when the volunteers accumulate the surveys, and make them available to the medical profession and to the world, if they can, that basic pain research will be funded like never before.
So all we can do is keep disclosing ourselves, fending off the negative reaction by many, and getting messages out from this prison. There is power in your words which propels that process.
It is both depressing and inspiring, as you say. I do not think there has ever been another like you and you are the voice of CP. If we had any other kind of voice, it would not be accurate.
Things are not very good here in the Gulag, and I hate to see and hear of the destruction, but every Gulag needs its spokesman, and Alan, you do that. Your raw descriptions, your pleading, and your self exposure, are too well stated to bypass. One must either accept what you say or one must reject it entirely. Your speech does not have the quality of a faker. It hits us in the face.
You have a gift, and I don't think anyone else could pack the punch which you give, simply by pulling the sheets back and letting us have a look. I could say many of the same things, but I am not in a wheelchair, so no one has the slightest interest in observing my efforts, and they are merely annoyed that I must go out in almost no clothing, so I don't bring them up short. I am not paralyzed so nothing can be that bad. Now let them get around you, if they can, and they cannot.
In some way I don't understand, you are in bed, at home, and yet your words come off like rockets fired into the air. They are ugly, but they are the poetry of pain. I am glad they are not introspective, because the great pain literature never is.
We all love you and admire your efforts, and your candid reports of what doesn't work, so we are not ashamed when it doesn't work for us--the doctors are so sure they are going to help us. We know they aren't worth serious consideration--only the PhD's who are forging ahead with the minds of the mighty, are going to save us. God help them.
No one does it like you. My life would be much diminished if I could not check in occasionally and see how your are doing. We do have more to fear than fear itself, we have life destroying pain to face almost constantly. We struggle through it because we have to, and we say these awful things, because somehow we know we, and others, had better not try to go this alone, however isolated and alone we feel. Thanks for saying things for all of us.
I am so sorry you have to face what is confronting you, but I am doing my very best to get my healthy friends to get your message out there, and I think sooner or later, the world will have to reckon with what you say. The psychiatrists will have to eat their vicious words. We are like witnesses against their lies and their ignorance, and that whole line of thinking which knows nothing about reality.
In heaven, there may still be bad duty, and maybe someone will nominate them to shovel you know what for about a thousand years, for their narrow-mindedness and blindness, or maybe they will be given full knowledge (which will be much worse punishment) and then assigned to be guardian angels over someone unfortunate, so they can learn a little "helpful attentiveness", which they badly need, it would appear.
We could all use the security of knowing we could get some help to live, but unless our words start reaching people, nothing will happen. To the extent you are capable, without overexerting your difficult motor ability, give us little messages, and we will lob them at the pain community. Some of them are certainly attacking us now, but I don't see how they are going to be able to overlook the immunofluorescence pictures of Hains. Everyone here really ought to get a relative to get you a copy of Oct 1 Journal of Neuroscience, Hain's article. You will know who the enemy is.
[This message was edited by dejerine on 11-06-03 at 11:59 AM.]
Thank you, Dejerine.
Did this person say what he/she needed to see to consider something introspective?
Paraylzed or not, pain is pain, and CP is CP. Darn shame we can't project our sensations, isn't it?
If I ever can get my back pain and balance improved, I'll type more. I don't know how people with worse scoliosis than me (and mine isn't that bad, according to the doc, though it does have me feeling off-balance and falling sideways constantly) do it, but I admire them.
Meanwhile, this is all driving me and my mother nuts. Me, because of the sensations, their effect on my life, and the fact that I can do nothing about them. Her, because she can't help me.
Alan
"Was it over when the Germans bombed Pearl Harbor?"
[This message was edited by alan on 11-07-03 at 08:13 PM.]
duramater
11-08-2003, 03:36 PM
I have decided to study psychology and specialize in neuro. I wonder if my experience with constant pain will put a new spin on the way a professional can relate to a person who is suffering? Who knows, so far the only person who seems able to make me feel better about the constant crunching, burning, throbbing and inflammation I live with is Alan. There is some kind of greatness inside that man.
Thanks for being around Alan,
Mary
You can come nurse me anytime, Mary.
http://sci.rutgers.edu/forum/images/smilies/smile.gif
Alan
"Was it over when the Germans bombed Pearl Harbor?"
Obieone
11-09-2003, 06:43 PM
Alan...
I want you to know I've edited myself about six times now trying to write this post in the hopes of getting it right! ....
Still no go... so let me just say this ... you are a remarkable human being, you humble me in a way no one else has on this board or for that matter in my everyday life away from here. You make me strive to be a better person and try a little harder at everything I do!! I'm sorry its sounding cliche...but thanks! You have had an impact on people and probably don't even realize it!!! http://sci.rutgers.edu/forum/images/smilies/cool.gif I'm so glad you have some soul mates here!
Stay strong and God bless!!
Obie
I'm glad someone feels that way. The more time (days, nights, whatever) I spend feeling my body burning and fighting my spine to keep my balance, the more I feel it just isn't worth the effort. Everything just gets worse as time goes on, anyway. http://sci.rutgers.edu/forum/images/smilies/frown.gif I'm spending more and more time just trying to sit still, as moving only aggravates matters.
Alan
"Was it over when the Germans bombed Pearl Harbor?"