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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Moby
 
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Escaping from the "sick role"

Postby Moby on Wed Oct 24, 2007 2:13 am

I am so happy to be well again, but I must be honest. I miss being sick. It is hard to break the habits formed over years which protected my energy for "work". Home time, I feel, is physical recuperation time. Daytime tv, a comfy couch, my pillow and rug call me. Is it really fair to expect me to do chores??? :oops:

I had a heart to heart with my husband this weekend, where he admitted he had become resigned to living with an invalid. I had become resigned to being an invalid, leading a strange double life, where at "work" I burnt out in a day and spent the next three days at home recovering so I could go to work again.

It is hard to accept that I now have the energy not only to do the things I want to do, but also the things that it is the responsiblity of a fit person to take on for themselves.

I know the term for this is "sick role". I found a fairly readable link about it here
http://www.thebody.com/content/art30637.html
There is a lot more on google that appears to be very academic.

Meanwhile, I have the dog to walk and dinner to cook (that *after* a day's work...unheard of!!!!! Is it really fair???????? )
:oops:

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Moby
 
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Postby Moby on Wed Oct 24, 2007 7:40 pm

No comments yet.

Perhaps I'm on my own in this, or perhaps people don't understand what I'm getting at or just don't find it interesting. I'll add to it though, as it helps me sort through my thoughts on this, and I think more people here than elsewhere will know where I am coming from.

One of my challenges in regulating my life is that I work shift work so it is hard to get into a routine, and so hard to compare one day with another.

Another challenge is the depression I am prone to, and there is a genuine danger that if I over extend myself I will get another episode of depression.

I am by nature an "all or nothing" person. I am used to finding my drive from emotion or from adrenaline. Without those, life seems a bit ho-hum as an adult. The childish pleasures of TV, reading, playing with the dog and eating present no motivational problems at all.

At work (nursing) I am driven by the desire to fill people's needs. I enjoy it, and use all the energy I have, physical and mental and emotional. But at home, I am struggling to find a direction and a balance. Even the excellent Flylady http://www.flylady.net/index.asp isn't getting through to me.

Anyway, if you've read this far, thanks for listening!

Di

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Postby j.a.taylor on Wed Oct 24, 2007 8:41 pm

I hear you Moby, and I can relate.

It's hard sometimes. I tend to overextend myself until I'm at the point of burnout, then I swing the other way, and don't want to do much of anything. And I have enough friends in Nursing to know that you definitely have a high-stress, though fulfilling, job.

However, over the years, I've started to learn how to bring balance to my life, though it's still difficult for me to maintain balance, and make my home a place of peace.

There are days I schedule myself to do very little when I get home, days I schedule to get things done, and days when I choose to do just one thing that needs done, and after that I reward myself with a time of relaxation.

I deal with a lot of stressful issues, and I'm pretty much on call 24/7. I have 3 offices--two in different buildings, and a home office, plus I consider my laptop and briefcase a portable office.

Sometimes I realize that I just need to take what I call a "mental health day." Maybe I'm just tired, sometimes I just need to get away, and sometimes I realize that I'm allowing stress and anxiety to build up, or beginning to view life through the lens of depression.

So I choose to create a "sacred space." I look ahead, find the time, and schedule moments just for me (or time to be with my family).

I'm choosing to do that tomorrow. I'm feeling a little under the weather, and it's been a high stress week, so I'm canceling a visit to a slightly important meeting that I generally attend, I brought a little work home, but I'm taking most of the day for myself.

There are weeks that I can't do that, but if things are feeling overwhelming, I get through those weeks by looking forward to an upcoming day when I can take time for myself, or I choose to steal a little time here and there. I may stop at a bookstore on the way home, may take a drive on my lunch hour in the afternoon, stop at a park and take a short walk, etc.

I grab the moments of peace when I can, and deal with the rest as it comes up.
John A. Taylor

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Postby Moby on Wed Oct 24, 2007 8:59 pm

Thank you JAT

Partly it was reading what you do in another thread that made me realise I could do more. Perhaps!

Where you schedule time off, I really need to schedule time "on"! I work part time, very part time. But I do take extra shifts when I feel up to it, so I can work as much as six days a week or as little as one (or no) days a week.

you write
[quote]
However, over the years, I've started to learn how to bring balance to my life, though it's still difficult for me to maintain balance, and make my home a place of peace. [/unquote]

This is exactly what I'm talking about.

I like your "sacred space" idea.

I hope you have a wonderful day tomorrow.

I do the same, catching lovely moments when I can.

You say you reward yourself with times of relaxation. I think that is where I need to look. I think I misunderstand 'relaxation' now. Nothing actually 'feels" relaxing except vegging out on the couch or swimming in the ocean. Everything else feels like...what? procrastination I guess. even typing here feels like procrastinating the housework.

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Postby lilsheba on Wed Oct 24, 2007 9:48 pm

Slightly off topic.....

I'm just grateful that I have the energy to do what I need to do at work now. I recently changed jobs. I work in a phone company, and was doing repair. Kinda stressful but not bad. Then I decided it would be a good idea to go into the install side of the house and the LNP desk. Oh boy....I'm basically the end point for any installs that involve porting a phone number from a different provider to us. Doesn't sound like much but all of these things are coordinated between us (clec) and ilecs like Verizon and Qwest. Each port involves having our tech on site as well. Here is the process I go through for each one, and they usually have 3 scheduled at a time:

Get a call from Qwest/Verizon I tell them that particular order needs to be cut on time.

Follow my tech to make sure he makes it to the job site on time so this goes relatively smoothly.

Qwest/Verizon calls back to say their central office cut it over to our dt.

When my tech is ready I port the numbers, pull triggers in the switch, have outside tech test it.

Tech tells me it's good to go and I then have to call Qwest back to close the order, check off my tasks in our customer database, mark my event in our tracking software complete, and mark it off on my big pile of papers of orders for the day.

I get to do this for 3 orders at a time, plus I may have a move or two in there, plus techs calling me because they don't have dt on a line, or it's not ringing in cause it's not ported to the right switch blah blah blah blah. I usually miss some of these calls which means voicemail get backed up, and I have provisioners emailing me wanting this that and the other thing done.

This process goes on all damn day. Till I'm ready to scream.

And that's if the ports all go well and don't turn into a cluster like one I had yesterday.

And if all of this is greek to you don't worry I only know it cause I live it all day :)

OH yeah and in that day I have to find time to build subscriptions in the system that we use to port numbers through, and disconnects, and do switch programming for upcoming installs so the lines are live and have dt.

This is why I'm at work from 6:30 am to about 5 pm. And come home so exhausted I can't see anymore. Let alone think. Being on CPAP buys me enough energy to get through the workday. And I'm grateful for that.

Jeanine


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Postby Moby on Wed Oct 24, 2007 9:59 pm

You work full time, Lilsheba?

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Postby lilsheba on Wed Oct 24, 2007 10:04 pm

Moby wrote:You work full time, Lilsheba?


Ummm yeah full time plus :) 6:30 am to about 5pm every single day.

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Postby Moby on Thu Oct 25, 2007 1:04 am

And if you don't mind replying, Lilsheba, how did successful sleep therapy impact on a) your work and b) your home life/recreational life?

I'm managing so much better at work I don't believe it, I am energetic and alert. At home I have not improved so much, and also at work I think I have to work harder than others at remembering everything and managing my time.

I am beginning to wonder whether I have an attention disorder (which can lead to very intense focussing on activities as well as inappropriate innattention)

http://www.news-medical.net/?id=5850

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Postby Moby on Thu Oct 25, 2007 1:23 am

And I just scored very high (positive) marks in this

http://www.med.nyu.edu/psych/assets/adhdscreen18.pdf

damn damn damn.

and damn.

plus a slight glimmer of relief that there might be an explanation for my disorganisation.

Or am I just finding another diagnosis for my "sick role" model?

hmmm

thank God for dogs. The dog is always there for me, and always the same :-)

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Sick role

Postby kteague on Thu Oct 25, 2007 7:19 am

Moby,
I intended to reply to your post sooner but wanted to think it through and got sidetracked. (It's not ADD, it's sleep deprivation.) But I found it interesting to assess how much my mode of operation while at my worst has carried over into areas that I feel should not be so affected at this point in my treatment. There is a convenience to not feeling well - can be made to be an excuse for just about anything one doesn't want to do. And it can be habit forming, not to mention nice that everyone is especially considerate of you when you're ill. So now I will be tuned in for ways I am living in the past and not in my present reality and abilities.

Thanks for bringing up the subject.

Kathy

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Postby weebles on Thu Oct 25, 2007 8:29 am

Moby,

I think I know that feeling. I am going through something similar. For years now, with OSA, I have structured my life doing everything that had to be done (work, parenting) and then once having fulfilled those "have-tos" letting everything else slide. Having done it for so long, I find that I am stuck in this pattern.

I need to find a way to break the habit and not waste so much time now. I have 3-4 hours after work each day that I could use to improve myself, my life, now that I am not vegetating. Change is hard, even when it is good change. :)

I will try to follow flylady's advice - you can do anything for 15 minutes.
Babysteps.

weebles

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adjusting to more energy

Postby Mile High Sleeper on Thu Oct 25, 2007 10:16 am

Moby, I'm glad you brought this up. I would guess that a lot of us go through similar stages. An early challenge in the therapy is now that you're getting perhaps 4 hours of good sleep, you find it hard to get any more sleep and sleep through the night. As the body adjusts over time you can sleep longer.

With each gain in physical, emotional, and mental energy, it's a change, and adjustment isn't always automatic. Your old self is gone, and you may not quite know who your new self is. That's been my experience.

I'm at the point now where I can actually take walks after work. I'm still adjusting to creating that new behavior. And I don't need to physically collapse on my days off after days of work, but I still love being a couch potato anyway, so I'm letting myself do that for a while. It's moving into new territory. We may have been there before, but it's so long ago, it's like a dream. So I'm being gentle with myself. It's more an evolution than a revolution.

Others seem to bounce back fast. We differ.

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Re: adjusting to more energy

Postby j.a.taylor on Thu Oct 25, 2007 12:25 pm

Mile High Sleeper wrote: We may have been there before, but it's so long ago, it's like a dream. So I'm being gentle with myself. It's more an evolution than a revolution.

Others seem to bounce back fast. We differ.


Great words of wisdom Mile High.

We need to recognize that we've formed patterns of behavior, even if some of them have been caused by physical conditions, and these patterns were formed over time.

So, even once we're feeling better, and moving in the right direction, it is still going to take time to undo the patterns of behavior and form new ones. You've learned the behaviors that come with being sick, and they are sometimes hard to undo.

Don't get too frustrated with yourself Moby (i.e. "damn, damn, damn").

There are days when you just have to b gentle with yourself, and days when you have to decide, "O.K., this needs to get done, so I'm just going to kick myself in the rear and get it done."

But get it done in bite sized portions. Flylady's advice that, "You can do anything for fifteen minutes is good advice." Work on something for that length of time, then if you want to continue, go for another 15.

I also follow the "two-minute rule." I look around me, and see what I can get accomplished in two-minutes or less (I'll even set a timer). Once that's accomplished, if I still feel up to it, I look around again, and do something else that can be accomplished in two minutes or less.

It's amazing what you can accomplish in a half-hour when you take this approach.
John A. Taylor

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sick role

Postby Catnapper on Thu Oct 25, 2007 1:18 pm

I too can relate to this topic. For several years as my knees became disabled because of arthritis, my activity level dropped. I asked for and expected more and more help from my assistants at work and from family members. After having both my knees replaced, I found that I needed to do more and expect less. My co-workers and family had gotten used to helping me, and did things for me automatically, and so I often did not need to push myself to do more. Now that I am more active, I often have to remind myself that I can do it even if I would rather have someone do it for me, whatever it is.

I think some of this is habit, and some is the slow improvement in my ability to be more active. Some is also that I have learned that moving and being active was painful and unpleasant.

As the treatment for sleep apnea started to improve my energy, things started to improve even more. I was surprised at times to see just how much I could do. I am still not at a level I would be satisfied with, but I am still getting better.

Maybe that is one way to think about this change, and if it is getting better, trust that it will continue to go in that direction as you relearn old skills and change unwanted behaviors. We do have to be kind to ourselves and allow for growth and change, even if they do not come fast enough for us or at the speed our minds would dictate.

Catnapper

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Postby sharon1965 on Thu Oct 25, 2007 2:39 pm

this is a great discussion, and one in which i wish i could participate in a meaningful way

however, after 9 months on cpap i still feel like hell a lot of the time

it's complicated for me, in that i have severe plmd and fibromyalgia as well, so the hope i felt around getting treatment and feeling like a normal person has yielded disappointing results so far

at this time i just have to be grateful that i'm not doing more damage to myself and that i'm not likely to stroke out or have a heart attack in my sleep any time soon

the concept of settling into a pattern of behaviour is very interesting though...when i was first dx'd with fms, i was at a very low point physically, and filled with resentment that i couldn't do what most people could do...my kids were just babies then, and over time my oldest learned to ask me each day what i was capable of doing...in her mind, she equated being sick with being little, so she'd ask me every morning, 'mommy, are you strong today or are you little?'...i was lucky in that i didn't go back to work for 10 years, and got to spend every minute with them as babies and toddlers, but sometimes i felt guilty that they were missing out on having a more energetic mom...luckily my husband is a very hands-on dad, so i'm sure they didn't miss out too much (more likely i was the one who was missing out)...

i've been back to work for 3 years now, part-time (3 days a week, 6.5 hours/day) and i'm so grateful for those four days off...i was hoping by now i wouldn't be using them to rest up any more, but that is still my reality

my hubby and kids are just used to me being exhausted and in pain all the time and i'm lucky to have such a wonderful family...still, i wish they had a healthy mom, and not someone they all have to take care of

what will i do when i feel better? it'll be interesting to see if i can change these patterns...i was labeled as lazy the whole time i was growing up, when really i was just profoundly tired...but being less able than everyone else has been part of me for so long, i wonder if it'll ever be any different


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