LIVING ON BORROWED TIME?

[CMNK12]

ARE WE LIVING ON BORROWED TIME? Am I just tired of it all. I have spent twenty years dedicated to serving others, spending time away from my family, being on call, leaving in the middle of the night, and now I am tired. I am sick. No one gets it. I smile all day and have nothing left when I come home. Does anyone else feel this way? I feel so selfish but I am exhausted. Sorry for the rant but I just have had a long day. CK

[Joe S.]

No one knows how long there stay here will be. We do not know what learning experience we will face or what challenges will come our way to manage or solve. Our job is to act as local area problem solvers. We are here also to learn and help others. When we cooperate with each other miracles happen that help us thrive.

Yes I am exhausted. I experience constant pain unrelenting pain that causes me to loose my mind on occasion. Sometimes I am selfish with my time and curl up with my comfort food, TV, and blankets. When you do this like I do it is taking care of yourself. Shortly you will return from hibernation to work with your larger world.

[Pisces24]

Sounds you are in burnout right now.  You need a VACATION!

Take a real vacation far enough away from your city. No calls except for emergency or no calls at all cause you didn't bring the cell phone. Pick a nice hotel/motel, walk around and see the sights, eat lunch by the water or do fine dining, get a massage, the list is endless. The best part is to Get Away for awhile.   

You'd be amazed that even a weekend helps! Good Luck!

PS: I was a times a burnt-out caregiver too.

[Scottietottie]

life is unpredictable.

i'm 60. Every decade of my life I have seen members of my peer group die for various reasons. the secret is to set out to live till you die and not to waste life worrying about how and when it may end.

[A66eyroad]

No, I don't think we're living on "borrowed time" although it often feels that way.

CMNK, I think I understand just how you feel. Here at work I try to act as though there is nothing at all wrong with me. I smile and laugh (when I can, when I don't have a mouthful of ulcers...) and do my job well.

Then there are days that I think I just can't put one foot in front of the other, and that it's just not worth it. Those are the days when I can't face the one-hour drive into the office so I take a "mental health day" and just lie on the couch and cry and sleep and cry some more. These days sometimes last a couple or three days, actually.

But there are days when I'm able to laugh and smile and live life like a regular person. On those days I'm feeling pretty great and can do much to help others.

And that's my favorite part of this forum --- the days I'm down, there is always someone here who can lift me up, who can tell me that, in the immortal words of George Harrison, "All things must pass; daylight is good at arriving at the right time; it's not always going to be this gray."

Joe and Scottie and Pisces, you are three of the members of this community who always make a positive impact on my bad days -- and my good ones!  I thank you for that!

Say, what is it about feeling sick that makes you believe you'll never ever feel any better?

[CMNK12]

Again thanks for the responses and sorry for the rant. I do have days where it all feels like too much and I just start to feel sorry for myself.
   I used to be this unstoppable person...I have run a marathon. I used to go to the gym at 4 am or run 8 miles prior to working a 10 or 12 hour or longer day and still do all the stuff at home. This past year has taken its toll on me with disease progression and I finally realized that I am never going to be the same. I have fought to be me, the same old me. Now I just have to learn to accept this tired,weak version of me. Just not what I had pictured for my life. I am sure all of you have this emotion. I will get over this,pull myself up again, get a grip.
   It just seems like every time I turn around this disease gives me a new surprise. I have a great husband and a great team of doctors. It is me , I am tired. Maybe a vacation is due.

[quietdynamics]

I don't feel I am living on borrowed time.

I do not work now. When I was working sometimes I did want to cry because I was almost too exhausted to drive home. I would sometimes sit in the car to rest so I could drive, get into the home and pass out for 2-3 hours. It made me an present absentee single parent.

This was before this forum, and I had no idea what was going on, I was told sjogrens, just meant sicca symptoms?  I was told people with Sjogren lead normal, full lives by the GP?  But, I wasn't even 25% of the normal me and I no longer even looked like me, quick thinking, tenacity, resilience..gone.

As mentioned can you take some time off. I did eventually start Meds for better quality sleep. Melatonin is what I used and still do, @ 3 mg. research has shown more is not necessarily better.
Later the neurologist added Ambien 5-10mg. This has made a huge difference, including better cognitive ability.
http://www.helpguide.org/life/sleeping.htm

I think we get stuck in an inflammation ---> stress ---> inflammation cycles, that trigger flares with increased pro-inflamation cytokines, increased cortisol,etc. I know the type of exhaustion sleep was not Rem, restorative quality. Naturally the effect of this cycle is a downward physical, mental and emotion spiral. The stress I am talking about is physical and emotional/neuro.
Sleep disorder in SJS are studied, quantity does not equal quality.


Hope this is helpful, something to consider.

[engy]

Sorry you are feeling down. We understand how you feel.

I am only half way to retirement but feel like I should (& I am) planning financially to retire early if I need to. I hope I don't but who knows. I always have people at work make comments at work about how I should quit working now to spend time with my family. They are trying to be nice & helpful but it makes me feel like I have a death sentence! I think to myself, they probably have more chance of dying in an accident or from the 32 oz. of diet mountain dew they drink everyday than I do of my autoimmune diseases!

Yes I get tired of hurting & being tired but I love life & my family & will fight til the bitter end to take care of myself & enjoy what I can!

[irish]

I hear ya! I worked as a nurse and had worked for many, many years. The last job I had for 5 years included on call 24/7/365 days a year as the only nurse for a new assisted living. I had to leave in the middle of the night, work 12 hour days or more, advocate with administration for patients rights (they were new to the business and needed educating) and smile all the time.

Did so much more than this all the while feeling so very ill and so weak I felt like fainting much of the time plus terrible infections, yada, yada, you all get it!!!!! The bottom line is we do get burnt out even if we are healthy.

I had changed jobs because something in my gut told me that I needed to find less stressful employment. Guess what, the government changed the rules and my stress load escalated big time. We all have to think ahead and plan ahead for changes in our health status.

I was 60 when I quit work and I had been ill for 40 years without a diagnosis. Finally got diagnosed later that year. Sometimes we just have to hunker down with our blankey and ice cream and watch a movie. Sometimes we just hunker down and sleep and sometimes we are literally glued to our recliners for days because we feel so lousy.

Our days wane and ebb. We always need to monitor where we are on the overload and attack the problem before it gets too bad. Nobody else will take care of us but ourselves. It is what it is. Problem being--we don't always look ill. Darn!!!! Looking sick might cut us a little slack at times. Good luck. IRish

[eyeamdry]

A sidebar here:  Yesterday I was in part of the hospital to pick up something I need for some CTs or MRI's I'm having.  A lady walked up to me and stood face to face and I said "do I know you?"  She said "it's Sheila."  Sheila has been a good friend of mine for 30 years.  I haven't seen her in a few years, but this woman was a skeleton and looked 80.  Sheila is in her early 50's. 

I said "oh, honey" and they pulled her back for an infusion.  I had to leave to get to another dr appt and I didn't get to talk to her.  I did leave my phone #, but she has not called me and likely won't.  I think she is very ill likely with pancreatic cancer.  That is living on borrowed time.   I am still upset about this and how awful I felt not knowing her.  If I had heard her voice first, I would have known who it was.  Lucy

[slccom]

We are all on borrowed time! No guarantees, etc. So, make each day count. Do something that gives you joy. Do something that gives someone else joy. Be grateful for something.  (Like, you don't have to listen to ME sing, "My little Sjoggie, my little Sjoggie... I can clear a room in 10 seconds flat with my singing voice!) Take care of yourself as you need to. Grieve the "old you" until you can fully accept your "new normal." Pet a dog or cat if you can find one. (Not the fish -- that tends to alarm them!)

Life is what we make of it.
Hugs and smiles and laughs to all,
Sharon

[Meld256]

CMNK,

I think most of us have felt the way you do at least for a while now and then, so we understand.  It is just plain hard to deal with the adjustment from being a strong and active person to one who we didn't exactly count on being.  I was in your shoes a couple of years ago.

Sometimes we need to just stop and give ourselves a break; comfort ourselves, cry and feel sorry for ourselves or whatever makes it better.  Pull the plug from the world and let others take care of themselves for a change. Is there a way you can make your job easier for a while, or take a vacation day or two for some pampering?  It might really help.

You will come out of this soon.  We all understand and will support and encourage you.  Please be patient with yourself and know that we care. 
Melinda

[A66eyroad]

CMNK, I know what you mean about what I used to be and what I am now.

When we were dating and also when we were first married, my husband used to call me "Summit Woman" because I loved camping and hiking and running and gardening --- and usually all in one day.

Twenty years later --- well, you get the picture.

I've said on this forum before that we all have to go through the stages of grief for our old selves as described by brilliant psychiatrist Elisabeth Kubler-Ross. And we don't go through them in order and are then finished grieving; we go through them at different levels and in a different order, over and over again. Each time we do this we come to a better understanding of ourselves and can love and accept ourselves again.

Here's one of my favorite quotes by her:  "The ultimate lesson all of us have to learn is unconditional love, which includes not only others, but ourselves as well."

What I'm trying to say, my friend, is that it looks to me as though you're pretty dern normal!  We all have days when we accept ourselves and other days when we don't.

And that's why I love this forum!  When I'm feeling all down on myself I can post something here and my besties will figure out a way to help me prop myself back up.

So post away!  And know we love you!

[CMNK12]

    Thanks to all who replied. I did take a quick break from reality with my sweet husband. We are strategizing now to make our lives better this next year and hopefully less stressful.

[susanep]

  I do understand how you feel. Most of us have been there or are now. You will get through this even though it doesn't always feel like it at the time.

The others had wonderful comments. I don't have much to add, but each day we all have is a gift. I have also learned that nothing or no one stays the same.

God Bless
susanep