Here it is in it's entirety:

http://www.butyoudontlooksick.com/na...poonTheory.pdf

Tho it is about 'Lupus'? I think that any immune disease or any neuro disease applies to the concept. That is why we can learn a GREAT deal from those living with other neuro issues.
This is a way at looking at your situation and coping with it. It is a way to describe graphically how you have to deal with your situation and cope with it. The applications are universal.

And yes, going thru various grief stages are necessary and they ARE NORMAL.
It is only up to YOU to recognize that it needs to be done. Deal with it and GET ON!

To be totally candid? I am no longer a cup-half-full or cup-half-empty person. I still have that cup? I am going to catch what ever comes my way! Now, if that danged cup breaks? THEN you will really REALLY hear from me about it! - Hugs and good things to all! - j

This is an excellent thread. Thank you Cycelops for posting it.

I also agree with what Kitt said about being in different stages. I have been confused and even angry when trying to sort this all out...just out of frustration. But I can honestly say I have never felt depressed or that it was hopeless. Maybe the meds help with that..I don't know. But my family does "get it" and so do my friends. I learned a long time ago to say no I can't, or no I am not up to it today. I will say it took a little time to get them to understand because they simply didn't know how it was that I could be fine one day and laid out the next. So, I printed off the "Chronic Pain Letter" and gave everyone a copy. So, now instead of insisting on anything they ask about my pain levels first. I find having distractions helps as well. But, yes, there are times when I just have to rest. But all in all, there is so much to look forward to pain or not. Anyway, I think I went through the majority of those stages a long time ago. I may have even skipped some. But, no, depression was not one of them. I hated that all of this happened but at the same time am thankful that the horrid pain I had in my neck and head is gone. Maybe that is why I can accept some of this other. There was a 3 year period of time when nothing helped. So this residual stuff is a bit easier to contend with.

Glenn,

Your second paragraph sums it up quite well for me. And I also have C6/C7 radiculopathy going on it IS different from the burning but it is just something I have to contend with for now as surgery is not warranted yet.

And, last but not least I saw my Neurologist yesterday and was honest. I told her there are days I think a simple Tylenol is all that is needed and there are other days that I feel like I need the strongest opiate available! She just smiled and said...that's the nature of the beast. And I so agree...it is the truth. Some days are just better than others. And I suppose too...having gone through this for 8 years now...I have just sort of accepted some of it and continue plowing through the rest.

[QUOTE=cyclelops;

All people with severe chronic progressive disease, and SOME, not all PN, bears a resemblance to MS, muscular dystrophies, ALS, Multiple System Atrophy, Parkinson's and other neuromuscular disease is many ways, if mentally adept, go thru the stage of grieving, multiple times over decades...it isn't done once and for all, it is done over and over again [Quote]

I agree - multiple times over decades... over and over again

Kitt

I seem to be on the short end of the spoons these days, but that is a very good analogy.

Glenn, not too long ago, I was able to pull off anything on the 'right' day....which DOES give people the impression you are a lot better off than you are on most days. I know of what you speak, and it is almost more frustrating then being drop dead sick.

Lately, there are no good days. That is just the way it is.

I have found out a few things in this new round of testing, including that I am immunocompromised, and infected with garbage of various varieties, which would definitely play into why I feel as sick and exhausted as I do....I am awaiating biopsy results and then likely a whole new round of testing to figure out how I got all this garbage. I am on no immunosuppressive meds, so, the question is, why is my immune system so shot, for me to be full of opportunistic infection in some very odd locations...painful I may add.

Some chronic diseases are better understood than PN, and of course, more predictable, better known to the public, and that probably makes those folks more understood, and perhaps more sterotyped, who knows? Regardless, there is no healthy coping, without dealing with it, head on, and working thru grief issues as they pop up.

I have always been a proponent of the theory that expending energy generates energy....well, that was a good approach, up til now....it is backfiring a bit here and now. Expending more, inevitably lands me on more and more pain meds and, sicker and more tired....the spoons are not dropping from heaven in quite the abundance that they used to. My spoons get me to the bathroom, an intermittent walk, and thru the occassional special event.

I am hoping that there will be days with more spoons, for all of us. That is the best we can hope for.

and then there are the days like thursday when i took my ten year old daughter shopping for clothes and im still short on spoons today.

'spoon' showers as there are meteorite showers? THAT is what we need somehow! I mean those spoons have to come from SOMEWHERE?

The whole energy thing? It's all about putting yourself as best as you can in the best position you can to do what little you can w/o destroying yourself further. A very severe form of conservation of energy?

I have to ask: WHICH various garbages? I think we ALL could benefit in the knowing....I personally do thing that seemingly 'unrelated' conditions DO and are connected somehow. There are just too many of us who have 'mysterious multiples'!

As far as energy again? Learning the LIMITS is key to learning to deal best with it all. Thing is? We really do not want to KNOW that there might be limits! But, building up very carefully our 'tolerances' and working our endurance abilities up to something closer to 'normal' [NOTE not normal?] is a goal that has to be carefully worked towards.. AND careful is the key word here.
I am waiting for the 'spoon' shower! I hope it comes soon? - j

Cycleops
"It is fine to think positive, I keep thinking positive, however, I am also dealing with grief. If you have real illness, with real functional capacity dimunition, you can't help but deal with grief. I think to say just 'think positive' without dealing with anger, sadness, resentment, is simply not the way to really cope with the issue. I don't think this author was saying that at all. I think she was saying, what Elizabeth Kubler-Ross said in regard to terminally ill patients, that it is a process. Having any chronic progressive illness, especially in the stages where work capacity and functional capacity is declining, will cause, the SAME reactions as Kubler-Ross discussed in her book."

I am not sure what you are trying to say here, as I don't beleive I said that I am only and solely thinking positivly? I have also been dealing with a very large assortment of other emotions for 3 years of which I allowed to take over me and run my life. I now have learned a new strategy to working with my illness, which offers me far greater benefit than the one I was using before. It is so good in fact that it has allowed me to face my demons head on, and take this trip. I believe one calls that "GROWTH".

If it works for me why knock it? It only has to work for me,for I am a being of one... and have the sole resposibility of navigating myself.


Cycleops
"It is especially difficult for folks with limited financial means, who, just can't take off on their dream trip, or go fulfill the goals of their lifetimes, or for folks who have lost insurance, and we have no national insurance program. Kudos to those who are fortunate enough to have the means, for those with limited physical or financial means, the goals have to be redefined, and adjusted to age, disease state, function, finances and the impact that our disease has on others"

Nobody can be held accountable for anothers financial circumstances, fortune or misfortune. There are plenty who are more comfortable than myself. We all have to do the best we can. The fact that I can afford a trip does not diminish me as a compassionate human being who also suffers with chronic illness, and also a member of the forum. I believe I have come a long way both physically and emotionally due to the help of my family,doctors,and the group here. I wish to share some positive experiences including my joy once in a while. Yes I am on a holiday, and when I return to OZ, I will be going to Fiji to my friends wedding, and then who knows? There is hope for many of us with PN. I realise we are all affected to varying degrees,and chances for recovery vary. But since I will only pass this way once... I need to make every effort to do the things that are right for me and my family, and try to extract a bit of happiness for myself in this dimension called "LIFE". And for right now it includes this trip I am on... to see the relatives from the European branch of my family that I haven't seen in many years.

Cheers
Aussie

Hi Joan,

I don't have heaps of energy. I think my PN is partly responsible and the Beta Blockers I am on also are not helping with the matter. I do alot with me mum who has 3 times the energy I have, and sometimes it's hard for me to watch a woman who is over 20 years older than me run around like a teenager. I wish I had that energy. But I often tell her "I have to go rest now mum, or I have to sit down for a while",and I make no apologies to her. I thinkshe is one of the few people who understand that my illness is often limiting.

I totally understand the spoon concept,I guess it's all a balancing act, we just have to find our centre. I too await for the spoon shower.

Thanks for the article! Good topic, and exactly what I needed today!

Psst....one of the things I do to help others is write articles for the But You Don't Look Sick website (the one with the Spoon Theory). Haven't been able to contribute since my Mayo visit as I was waiting for the brain fog to recede a bit, but I think I'll give it a go sometime next week whether I'm foggy or not.

I've had the self-imposed isolation thing going for a few months. Was just burned out from all the tests and needed to chill for awhile to give my new meds a chance to work.

Can't remember what else I was gonna say.

fanfaire

First it's so good to hear from you, it dosen't bother me the brain fog,
I have it really bad lately,not to bad i'm sure these fine people
understand,i mean really understand. We are glad you made it to
your puter and it's good to hear anything you have to say,we do not always
have to be perfect. And I'm sure you were tired on the Mayo trip, you at least know why you were tired..
I to have been hit again ,and when i'm ready I will be able to talk about it.
Thank you for the spoon,that's just hearing from you.Let's pass those
spoons around to each other ,most of us have been through so much
we know how to be gentle. This has been good for many.Bob what
a wonderfull place you live. Don't know if I will ever see it in person
but looking at it on the computer weel what a joy.. Hugs to all. Sue