[Dakota]

I try to live the best life I can, given my PN pain. Everyday I do something in the morning for about 4 hours: housework, errands, volunteer work in my church office, or something like that. Then I come home at about 1:00 and change into somethng comfortable and lie down on my couch. I turn on the tv because that helps distract me from my pain, same for being on the laptop. I really don't feel well enough to do anything productive while lying down. Sometimes I nap, and that helps calm the pain. Usually I watch tv and read or something until very late, then fall asleep. This works for me okay. I do have a pretty good life in the mornings. I am not depressed.

But sometmes I feel guilty. Should I be pushing myself to live a "fuller, more normal" life? I go through times when I try to get out and do some type of exercise, but it always ends up with more pain than I can handle. Sometimes I feel like instead of trying to be a better, more "normal" person, I should just try to be the best "pain filled" person I am, and I think that this is it. Because in reality, I can't escape that I am a "pain person". I don't know. I am okay with how things are now. I can be nice to my husband because I can control my pain pretty well living like this. I wish I could do stuff with him, but in reality I can't -- activity causes more pain.

So who should we be? Should we struggle heroically to be the normal person we once were and that everyone thinks we are (I don't look sick, my friends don't realize how severe my pain is)? Or should we relax and accept and just try to be the best person that life has thrown at us, which is a "pain person" with limitations; for me should I be ashamed of my tv filled, couch potatoe lifestyle? Or happy and satisfied?

I guess a lot goes with how I was raised to be an achiever. And there is so much pressure from society for disabled people to be heroic and do heroic things. But pain is so different from being an amputee or even a paraplegic. It is really hard to figure out our place in the universe. Or at least it is for me.

I would be interested to know how others cope. Is my lifestyle bad? Should I change? If so, how? Any suggestions?

[Monica de Lara]

No I don't think you should change your lifestyle. People put expectations on us, all kinds, but we cannot please everyone. You should please yourself first. Don't think of yourself as a pain filled person, you're much more. You're not neuropathy, you're a woman, a wife, a mother (i think so) with neuropathy. Your body is alife therefore it is able to heal. In the meantime, you have the right to rest and to take care of yourself. If you feel, like sometimes i do, that you waste your time by slpeeping or resting, think of it this way. You're resting so later on you can become a more productive person. There are activities that can make your life more interesting as you heal and do no require physical effort. Try one and see how you feel. But mostly, if people are already putting pressure on you, do not contribute to that, do not put more pressure on yourself.

[Dakota]

Thank you, Monica. It helps to have validation, someitmes.

[dahlek]

I rode a horse, I'd ridden horses all my teen to adult life, with a break after college until I'd gotten married and well, 'settled'. I then started riding again, lost lots of weight and was active, but balancing home, work and fun life stuff was challenging. I bought a horse, a 'challenging' but promising one who'd had some hardships and obvious 'mental' challenges to which Horse had acted/reacted in a Horse way. But compared to my prior horse riding life was well, a real challenge. I say this all because some riding teachers speak of something called a 'Circle of Comfort'. That is, the area we feel and can do 'things' safest. Yes, pushing THE ENVELOPE is almost expected of all these days, but when working with another 'mind' of another creature who has a mind that cannot be fathomed is harder to stretch.
It sort of prepped me for my Neuro and other issues. Some things you can try to bulldoze, others tippy-toe around, and yet others sort of work to gently push out in sort of a yeasty dough kneading. No one tactic works for any given situation. But, to not try to push, just maybe learn some limits as to how hard you push in any quarter, just stretch things maybe is to plain old give up. You have to try. Even half-hearted trying can yeild results at times. The more you try to DO the easier it can be to try to DO and then the DOING becomes easier. It takes a real knowing of yourself to even try, and then find the limits and scopes of your trying. In that effort, it can be exhausting. But the effort with prudence and caution [hey, self-preservation] and persistance it can work.
Yes 'guilt' can come into play? Your body says NO! KEEP STILL-Won't hurt as much. At the same time, you have to move or suffer all sorts of worse consequences. You have to learn the real terms/self-definitions of true need to REST versus moving. Even if you do little bits of work, exercise or living, and keep up building up the 'bits', you can find that you can do more than originally you expected. It is not 'raising the bar' as to what can be done, it is simply keeping that 'bar' up to go over, at times again, and again, and again. Keep trying, and then doing and 's do not give up. - j

And yeah, it can hurt, but learning the different hurts, can be a good experience, there are good ones as well as bad ones.

[Brian]

Monica is so right, why push yourself beyond your limitations ? your the best judge of how much you can do, know body else , if you are comfortable doing what you are doing, then keep on doing it, other people without PN have no idea what it's like and if someone is trying to push you into this productivity crap, tell them where to go

Brian

[Megan]

My DH and I have been in discussion about downsizing our home because I simply can't keep up with all the garden, lawns, maintenance (helping DH) and the house size itself anymore......except there is always a reason why it's not the right time yet to make our next move. The dog is old and will only last a few more months or a year; son hasn't moved out of home yet; mother is elderly and lives nearby and I am the first point of support for her. However she has more energy than me mostly and can't understand when I don't offer to give her more time - even though I'd love to. I'm sure she simply doesn't have a clue! I am lucky she is still driving at 85 and very competent so she is somewhat independent, even although there is a growing dependancy happening.

I've found it's not so much myself these days who strives with expectations but the people who rely on me, is where the dilemma comes in!! These invisible illnesses do not tend to conjure up much sympathy and understanding from others around us.

It is lonely at times...but think of all the wonderful quiet things we can do these days without rushing around. We are literate, we have books, magazines, we have TV, telephones, music systems and computer....and depending on our level of disability we may be able to do crafts or whittle away at a wood carving! Literacy and communication devices mean we need never be cut off from the outside world. We can take pleasure and joy in small things. Go ahead and lie on the couch I say.

I was raised also to be an achiever but physical limitations, pain and fatigue have changed a lot of that and cause a war within. We have to learn a new thing, and that is to be content within the limitations of our ability. Easily said, hard to do!

[Hurty]

Susan,

I have the same inner struggle, as I'm sure most of us here do as well. I find that it is mostly my guilt at not living the life I envisioned that is making me sad. My friends and family understand things to a point where they do not put expectations on me but at the same time, the invisible illness prevents them from reaching a real level of understanding.

People have seen, for example, "cancer" whether it be by someone they know or depicted on TV, etc...there are physical components viewable by the naked eye, people *know* that chemo drags the crap out of you...I, without having had cancer, can completely empathize with what someone might be going through and imagine what it must be like.

With our afflictions, you often can't *see* anything and the symptoms aren't easily translatable to others. And, when pain is involved, there is often the aspect of someone minimizing (and not always to be a jerk, even well meaning people) what that must be like since, hey, I have aches and pains too. Oh, you're tired, yeah, I'm tired too. Not ever understanding that it is NOT the same as 'aches and pains' or a (in my case) regular situation of 'being tired'. I'd kill for regular aches and pains!

Back to the guilt aspect...you did struggle and overcome I'm sure for a very long time before things got to where they are. I bet you don't give yourself enough credit for that. I was living with pain on an infrequent basis for years and then when it was daily, I put up with it for about two years before I finally sought treatment/diagnosis.

Just because you may reach a point where you aren't sad over what could have been doesn't mean that you've given up either. Lives change by the day, it is the hope that you need to retain that your situation could improve somehow, someday (even only if it's a little bit) and that as far as worst case scenarios go, you could be in a far more dire situation. (Not that I'm suggesting we taking solace in other people's misery!)

[daniella]

Thanks for this topic. I think for myself I try to and this is all easier said then done but focus on my needs and less on what others think. This has been a big goal especially when I was in recovery from my eating disorder. Many outside people will have judgements and opinions but then they go about there life and your left to suffer. Unless you go through a daily battle of this everyday you can not understand. For many years before this issue I did things based on what others thought or said. It kept me miserable. After so many years it was hard to break that but when I do things and of course I still do somethings for others but for some areas I ask myself will this make me a better or more fufilled me? As for this pain issue I'm trying to find my limits and boundaries. For my pain issue I was told by my docs I have to push through as much as I can and be on my legs so I try to do a morning walk,daily errands,push myself to meetings so on. I do have depression so when I don't feel up to doing something I have to ask myself is it cause I hurt so bad beyond pushable or is it the mental pain that I CAN push through. As for guilty I hear and understand you too because I feel this daily. Now in therapy what I'm trying to work on is the reasons behind why I feel that way and to remind myself guilt doesn't achieve anything and what I CAN do in a more productive way to feel better about the situation. I think many times for myself I often feel others are expecting something and that in turn makes me feel guilty but in reality its myself putting those expectations on myself. There are many things right now I wish I could do like go back to school or work but I can't right now but I can do more then I did before like daily walks,errands,so on so I try to focus on that. Now like I said I can say all these fluffy happy things but I often feel despair and all the feelings your saying. So most of what I'm saying is work in progress cause there is nothing more I want is to be "normal". It is a lot of therapy so I thought I would share what I learn.Many hugs.

[shiney sue]

SOUNDS GOOD TO ME. AND MEGAN I TOO AM THINKINKG OF MOVING TO SMALLER LIVING AREA,THE CHILDREN LIVE SO FAR AWAY,SO NO NEED FOR SUCH A BIG HOUSE..MORE THEN ANYTHNG THE BLASTED STAIRS.

j SAID SOMETHING IMPORTANT WE MUST STAY SOCIAL,CHURCH,I HELP AT THE FOOD BANK,I CAN GET AROUND FASTER IN MY ELECTRIC WHEELCHAIR AND THIS HELPS OUT SOME OF THE OLDER FOLKS,{YES THERE ARE A FEW OLDER THEN ME}..IF MY CHILDREN CAN'T MAKE IT FOR THANKSGIVING I WILL
HELPING OUT AT THE SALVATION ARMY...BUT SHE RECCOMENDED IF NOTHING ELSE ,I SHOP AT NIGHT WITH BOB,AND WE TALK TO THE LATE NIGHT WORKERS..DOESN'T MATTER JUST GET OUT DOORS TAKE PICTUES
IF YOU CAN FIGURE OUT THE 4 BOOK. WE ARE HAVING REALLY NICE WEATHER GET OUT BEFORE IT GET'S COLD,WE DON'T NEED MORE FALLS.

i'M BREAKING THINGS TO DO MOSICA STUFF IN BETWEEN OUCHIES AT REHAB,
THAT COULD BE DANGEROUS,BUT I COULD BE THROWING KNIFES AT THE OTHER PATIENT'S...READ LOVE,LAUGH AND TRY TO PICK THINGS UP WITHOUT
DROPPING THEM..GETTING FOOD TO MY MOUTH IS SOOO,HARD BUT IT KEEPS THE WEIGHT OFF...fOR THOSE OF YOU WHO HAVE RIDDEN HORSES
WHAT'S GOOD FOR PRESSURE SORES ON YOUR BUT,HAVE THEY COME UP WITH ANYTHING NEW????THEY HAVE BEEN PUTTING ME ON A POOR RETIRED HORSE TO HELP MY MUSCLES,IT'S AMAZING,AND SCARY KIND OF,AND THE OTHER KIDS LAUGH AT ME....JUST BECAUSE I'M 61 AND THERE SOOOO YOUNG. I VERY SERIOUS ABOUT MY PRESSURE SORES,OH I'M SURE THE KIDS HAVE THE ANSWERS BUT THEY WOULD BE LAUGING TO HARD TO ANSWER.

JUST GETTING UP GETTING CLOTHES ON,IS A WONDER,MUCH LUCK TO EVERYONE. SUE JUST LEARN TO PACE,I SOMETIMES OVERDO.

[glenntaj]

--especially American culture, in which you are what you work at, it's very hard to have good self-esteem if you're not working as hard as you can to "get ahead"--or not working for pay at all.

I know the feeling--I am a type A+ personality (that's probably apparent from my posts; I take the same approach here--there's never been a problem I can't bludgeon to death ). The odd thing about this is that my intensity has not been as career-based as others'; I have that hippie perspective that we're all just rushing around in a vulgar quest for the almighty dollar to puff our chests out about it and then buy stuff we don't need and that endangers the health of the planet. SO--I get strident and loud about THAT, and I blog and comment intensly.

It has become apparent, though, that, despite the ability to bring the energy, there's a cost for going on and on and on without listening to the body's demands for rest and relaxation. (I may still be able to do a three hour improvisational session about test prep, but unlike twenty years ago, I'll need a long rest afterwards.) I love the "spoon" analogy; I have fewer spoons to give out daily than I used to, and the number is also highly variable from day to day. If I give out a number of spoons doing something intensly, I've got fewer left to do something else, and at a certian point I may run out entirely, needing to rest and re-charge until I can make more . . .

So, I work a flexible schedule. I take the occassional afternoon nap. I veg out in front of the computer screen, more than the TV (I've discovered Internet video/movie/animation archives like alluc.com). I say "no" to some social events. And I still do feel somewhat guilty when I do these things. But I'm learning to not feel TOO guilty.

I've not been immersed in Eastern sensibilities, but I suspect Wings would say this is about balance, and everyone has a different balance.

And if people say something to the effect that "you look good, are you really in pain?" I always tell them it varies, and when it's bad, they'll know because I won't be around to respond to that question (which is an edgy enough response to deflect it).