Question about stamina and friendships.

Eileen · 08-07-2010, 10:39 PM

I am blessed to have a great circle of friends, but the truth is that I do not share with them much about my pain levels or my exhaustion either. I hope no one thinks I am complaining when I ask the following question, but I really am curious how other people deal with this issue. The week coming up is a good example. On Monday I am meeting a friend for dinner and a movie. Tuesday dinner with another friend. Wednesday out of town company arrives and stays till Friday. I like all of these people, but my shoulder's scream in pain most of the day and night, sleep is elusive, lately I seem to have more trouble regulating my body temp, and while I am grateful to have friends, I find myself already exhausted just thinking about the week coming up. Sometimes that anticipatory dread takes the fun out of the experience and all I can think of is having it over, like some sort of checklist that insures my friends are still there, but I check them off the list in much the same fashion one would chores because I am so tired, and in so much pain sometimes that all I want to do is stare at a wall and be asked to do nothing at all. Am I the only one who feels this way? If this resonates with anyone please tell me how you manage, or how you deal with the exhaustion that is practically mind-numbing at times.

zillazangel · 08-07-2010, 10:59 PM

that would exhaust ME and i'm able bodied. Is there any way you can get some extra sleep during those days? Put aside 2 hours each day, particularly wed-frid for "down time". Good luck ... and its really great that you have so many friends, even if all of that flurry of activity will be very tiring and hard on your body. Take care of you! Let your friends take care of you too, don't be afraid to ask them to do tasks for you - dishes, trash, whatever is hard for you to do. If they are real friends they'll do it in a flash and happily. I'm a good visitor always, I work my butt off when I visit someone, and especially if they're in a chair.

Good luck!

Eileen · 08-07-2010, 11:07 PM

Quote:

Originally Posted by zillazangel

that would exhaust ME and i'm able bodied. Is there any way you can get some extra sleep during those days? Put aside 2 hours each day, particularly wed-frid for "down time". Good luck ... and its really great that you have so many friends, even if all of that flurry of activity will be very tiring and hard on your body. Take care of you! Let your friends take care of you too, don't be afraid to ask them to do tasks for you - dishes, trash, whatever is hard for you to do. If they are real friends they'll do it in a flash and happily. I'm a good visitor always, I work my butt off when I visit someone, and especially if they're in a chair.

Good luck!

Thank you for the good wishes. I think I have hidden who I really am and what I deal with for so very long that it is now part of who I am, even if that is no longer in my best interest. I have friends who ask me occasionally if there is anything they can do to help me, but I truly think they would be shocked if I ever took them up on the offer. I know that this has been my problem, and part of my coping strategy for years now, but I would be presenting a person they literally do not know to them if I told them I was so tired I wanted to curl into a ball, so much in pain that the smile plastered on my face is nothing more than a mask that does not show the truth of what lies below. It's like I created this whole personae, which worked pretty well for me in terms of things like employment and school, but I can't pull it off anymore as my body lets me know almost every minute of every day how worn out it is. I seem to have created this "person" they think they know and like, and now I am too scared to present the real me, or the one that has emerged as pain and exhaustion levels rose to frightening levels. Sometimes I even wonder if it is my OWN denial that comes into play, and if I don't give voice to the pain then it "isn't as bad as I think" and if I keep pushing to do things no matter what the cost then I still have my younger self back. Sorry, I didn't mean this to be a psych rant from an exhausted quad, but surely I can't be the only one who has done this strategy as a survival mechanism?

dash · 08-08-2010, 12:01 AM

Eileen, I know exactly how you feel. I've wondered how you've done it. We have similar injuries and have been quads about the same lenght of time (give a few yrs one way or another).
I'm just too tired now, my shoulders are killing me (still using manual). Tomorrow is the combined August family b-day party. I promise to come back.

swh2007 · 08-08-2010, 08:05 AM

I make sure I am totally rested before they get here, I ask for help, I try very hard to pace myself, I take a break from activities when I need to, I tell them when I don't feel good and can't do something, I prioritize so I can do the most important things, and then I collapse for three days after they are gone to recoup. They understand.

Eileen · 08-08-2010, 10:26 AM

Dash and swh2007,
Thank you for your replies. Dash, while I am sorry to know that you are having the same exhaustion and pain levels it does help to know this is not just me being wimpy. Once upon a time I worked, went to school nights, and still had time for a social life. Now I neither work nor go to school, and the out of town friends that are coming are staying in a hotel, so I am no responsible for things like meals or clean towels and the like. The other friendship related events in my life invariably have to do with eating out at restaurants, so that isn't causing me any work either beyond getting there, sitting up reasonably straight, and having conversations without making it obvious that I am in pain and counting the moments till I can go home, tilt, or simply crump into a mindless creature polking a remote control button for the television with nothing required from me at all.
swh, I need to use you as a role model, cause I am clearly awful at just telling anyone I am too tired, too hurting, whatever, and taking breaks. I think I have some sort of inner fear if I do that they will just move on and start thinking of me in ways I spent my whole life trying to insure that they did not. Sigh.......this getting older with a SCI is definitely not for sissies!
Dash, Good luck at the family birthday celebration. I will be thinking about you and hoping you can withdraw before the pain escalates too badly!

swh2007 · 08-08-2010, 01:12 PM

Quote:

Originally Posted by Eileen

Dash and swh2007,
Thank you for your replies. Dash, while I am sorry to know that you are having the same exhaustion and pain levels it does help to know this is not just me being wimpy. Once upon a time I worked, went to school nights, and still had time for a social life. Now I neither work nor go to school, and the out of town friends that are coming are staying in a hotel, so I am no responsible for things like meals or clean towels and the like. The other friendship related events in my life invariably have to do with eating out at restaurants, so that isn't causing me any work either beyond getting there, sitting up reasonably straight, and having conversations without making it obvious that I am in pain and counting the moments till I can go home, tilt, or simply crump into a mindless creature polking a remote control button for the television with nothing required from me at all.
swh, I need to use you as a role model, cause I am clearly awful at just telling anyone I am too tired, too hurting, whatever, and taking breaks. I think I have some sort of inner fear if I do that they will just move on and start thinking of me in ways I spent my whole life trying to insure that they did not. Sigh.......this getting older with a SCI is definitely not for sissies!
Dash, Good luck at the family birthday celebration. I will be thinking about you and hoping you can withdraw before the pain escalates too badly!

I decided to try being honest with myself and others. It's hard to fight a problem if you don't admit you have it. I bet your friends understand and would be fine. They are probably getting older too and facing limitations they did not used to have.

Mona~on~wheels · 08-08-2010, 02:05 PM

Eileen I bet they know & love the real you more than you think they do.
If it comes as too big of a surprise that you have a disability, that you have aches & pains, and that you need rest just like able bodied people do. Then they're not real friends. You don't have to be Super Woman! You don't have to throw it all out at one time. A simple my shoulder has been hurting. Guess I'm getting on up in years. lol
I'm gonna rest for a few. Then I'll be ready to go again. I find people like honesty.
They may be hiding they're aches & pains, parts of them you don't know. Thinking my gosh Eileen never hurts. I can't tell her how I hurt able bodied when she never hurts. kwim? Just be honest. Honesty truelly is the best policy. {hugs} Mona

P. J. · 08-09-2010, 07:28 PM

Eileen, I read your post with great interest because I feel the same way. The smile that I have plastered on my face is the same kind of mask that you describe. When I first asked my family doctor for an anti-depressant he argued that I didn't need one because I showed no sign of depression. It took me forever to convince him that the smile was a coping mechanism. I'm a T-3,4 para and I'm always tired. When I wake up in the morning I begin the count down of how long it will be before I can get back in the bed. I too get lost in TV programs, some I don't even like. Like you said, aging with a SCI is not for sissies.

gjnl · 08-09-2010, 10:32 PM

Guaranteed.... this is not just a person with a disability thing. I organized and executed a pool, garden party, BBQ for 9 adult family and friends and 5 children this weekend. We had the best time, and I had a great time in the pool and playing with the kids and being with the family and friends for the party. But on Sunday....I knew I had played hard on Saturday. I said to our friend, who stayed overnight with us..."Wow, I played hard yesterday." and she said you worked hard yesterday. Clint Eastwood said in one of the "Dirty Harry" movies...."every man has to know his limitations." Good advice.

Best,
NL

08-07-2010, 10:39 PM	#1
Eileen Senior Member Join Date: Aug 2007 Location: last house on the left Posts: 9,796	Question about stamina and friendships. I am blessed to have a great circle of friends, but the truth is that I do not share with them much about my pain levels or my exhaustion either. I hope no one thinks I am complaining when I ask the following question, but I really am curious how other people deal with this issue. The week coming up is a good example. On Monday I am meeting a friend for dinner and a movie. Tuesday dinner with another friend. Wednesday out of town company arrives and stays till Friday. I like all of these people, but my shoulder's scream in pain most of the day and night, sleep is elusive, lately I seem to have more trouble regulating my body temp, and while I am grateful to have friends, I find myself already exhausted just thinking about the week coming up. Sometimes that anticipatory dread takes the fun out of the experience and all I can think of is having it over, like some sort of checklist that insures my friends are still there, but I check them off the list in much the same fashion one would chores because I am so tired, and in so much pain sometimes that all I want to do is stare at a wall and be asked to do nothing at all. Am I the only one who feels this way? If this resonates with anyone please tell me how you manage, or how you deal with the exhaustion that is practically mind-numbing at times.

08-08-2010, 08:05 AM	#5
swh2007 Senior Member Join Date: Dec 2009 Location: Florida, USA Posts: 2,063	I make sure I am totally rested before they get here, I ask for help, I try very hard to pace myself, I take a break from activities when I need to, I tell them when I don't feel good and can't do something, I prioritize so I can do the most important things, and then I collapse for three days after they are gone to recoup. They understand. __________________ 2012 SCINetUSA Clinical Trial Support Squad Member Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

08-08-2010, 02:05 PM	#8
Mona~on~wheels Senior Member Join Date: Oct 2007 Location: Cleburne, Texas, USA Posts: 5,640	Eileen I bet they know & love the real you more than you think they do. If it comes as too big of a surprise that you have a disability, that you have aches & pains, and that you need rest just like able bodied people do. Then they're not real friends. You don't have to be Super Woman! You don't have to throw it all out at one time. A simple my shoulder has been hurting. Guess I'm getting on up in years. lol I'm gonna rest for a few. Then I'll be ready to go again. I find people like honesty. They may be hiding they're aches & pains, parts of them you don't know. Thinking my gosh Eileen never hurts. I can't tell her how I hurt able bodied when she never hurts. kwim? Just be honest. Honesty truelly is the best policy. {hugs} Mona __________________

08-09-2010, 07:28 PM	#9
P. J. Member Join Date: May 2007 Location: Alabama Posts: 93	Your story is my story Eileen, I read your post with great interest because I feel the same way. The smile that I have plastered on my face is the same kind of mask that you describe. When I first asked my family doctor for an anti-depressant he argued that I didn't need one because I showed no sign of depression. It took me forever to convince him that the smile was a coping mechanism. I'm a T-3,4 para and I'm always tired. When I wake up in the morning I begin the count down of how long it will be before I can get back in the bed. I too get lost in TV programs, some I don't even like. Like you said, aging with a SCI is not for sissies.

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08-07-2010, 10:59 PM	#2
zillazangel Senior Member Join Date: May 2004 Location: North Carolina, USA Posts: 3,312	that would exhaust ME and i'm able bodied. Is there any way you can get some extra sleep during those days? Put aside 2 hours each day, particularly wed-frid for "down time". Good luck ... and its really great that you have so many friends, even if all of that flurry of activity will be very tiring and hard on your body. Take care of you! Let your friends take care of you too, don't be afraid to ask them to do tasks for you - dishes, trash, whatever is hard for you to do. If they are real friends they'll do it in a flash and happily. I'm a good visitor always, I work my butt off when I visit someone, and especially if they're in a chair. Good luck!

08-08-2010, 12:01 AM	#4
dash Senior Member Join Date: May 2009 Location: Florida Posts: 436	Eileen, I know exactly how you feel. I've wondered how you've done it. We have similar injuries and have been quads about the same lenght of time (give a few yrs one way or another). I'm just too tired now, my shoulders are killing me (still using manual). Tomorrow is the combined August family b-day party. I promise to come back.

08-08-2010, 10:26 AM	#6
Eileen Senior Member Join Date: Aug 2007 Location: last house on the left Posts: 9,796	Dash and swh2007, Thank you for your replies. Dash, while I am sorry to know that you are having the same exhaustion and pain levels it does help to know this is not just me being wimpy. Once upon a time I worked, went to school nights, and still had time for a social life. Now I neither work nor go to school, and the out of town friends that are coming are staying in a hotel, so I am no responsible for things like meals or clean towels and the like. The other friendship related events in my life invariably have to do with eating out at restaurants, so that isn't causing me any work either beyond getting there, sitting up reasonably straight, and having conversations without making it obvious that I am in pain and counting the moments till I can go home, tilt, or simply crump into a mindless creature polking a remote control button for the television with nothing required from me at all. swh, I need to use you as a role model, cause I am clearly awful at just telling anyone I am too tired, too hurting, whatever, and taking breaks. I think I have some sort of inner fear if I do that they will just move on and start thinking of me in ways I spent my whole life trying to insure that they did not. Sigh.......this getting older with a SCI is definitely not for sissies! Dash, Good luck at the family birthday celebration. I will be thinking about you and hoping you can withdraw before the pain escalates too badly!

08-09-2010, 10:32 PM	#10
gjnl Senior Member Join Date: Jun 2005 Posts: 5,122	Guaranteed.... this is not just a person with a disability thing. I organized and executed a pool, garden party, BBQ for 9 adult family and friends and 5 children this weekend. We had the best time, and I had a great time in the pool and playing with the kids and being with the family and friends for the party. But on Sunday....I knew I had played hard on Saturday. I said to our friend, who stayed overnight with us..."Wow, I played hard yesterday." and she said you worked hard yesterday. Clint Eastwood said in one of the "Dirty Harry" movies...."every man has to know his limitations." Good advice. Best, NL

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