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I think I finally understand some things

Cath111CCath111 Posts: 3,702
edited 06/11/2012 - 8:51 AM in Chronic Pain
Hi fellow spineys.

I think I'm finally understanding some of the things that you all go through consistently. My life has changed and I feel the need to share some thoughts with my friends.

As most of you know (or even care), I'm just over one month into my new job. It's amazing how different my life is now vs. "then".

"Then" was when I was unemployed, did only what I could do and only occasionally overdo, but had enough wherewithall to go to a concert with my hubby or out for dinner with friends on any given day because I had my time before the event. My days were golden - I rested, cared for me, took care of and raised my Wally, did what I could around the house and got through life as easily as one can with spine problems. Don't get me wrong - there was the stress of not working and sometimes it was debilitating - but in hindsight, I'm able to look at it in another dimension.

Now, working full time, my "me time" and down time is so minimalized that I don't want to go to a concert during the week (tonight my hubby left me for a concert, sadness in his eyes but gratitude in mine), don't feel capable of doing much after work and suddenly realize that I'm now like so many of you. The work and commitment of the day drains you like a leech. I've also discovered that my little 2-year-old Wally takes his revenge in the middle of the night if he doesn't get enough time with us in a single day, so working full time, coming home for an hour, going out and coming home and going to bed in two hours wreaks havoc on our sleep due to his need for attention, thus our next working day.

I didn't work for two years - only part time for a month or so after my ACDF in 2008 and not at all before and after my TLIF. I had so much "me" time. Although I love my job and it isn't as painful as I thought it would be, there's still some pain that I need to work to control.

And, as I was saying from the beginning, the time outside of my work has become a burden, trying to keep doing what I was doing when I didn't have a job - singing and running sound at the church, going to concerts, going to dinner with friends - I just don't want to do any of it and feel that it's not even possible not only physically, but mentally.

This isn't totally or even mostly due to chronic pain (although I've put it in this section), it more has to do with losing that part of my life that is my own. I'm relishing having this evening to myself, I get so little anymore. I'm skipping church this weekend where hubby plays drums because I need more "me time".

We need to realize that with everything we do, one part of our life goes away and another begins. Nothing is too horrible to withstand - being uncomfortable, lonely, in pain, sad, tired, depressed - yes, some or all of those things, but it's all part of our ever changing lives and defining moments that we endure because we...are. We just are. And that's a good thing. It IS difficult, we have feelings and sometimes just the thought of others out and about when we're relaxing or just taking care of ourselves, our "me time", brings guilt, sadness or a host of other emotions, but tomorrow is another day and brings new hope and promises. Just as today may be stifling, tomorrow may be liberating.

So try to enjoy now, today, this moment, as much as you can. Take what is given and endure the things that feel like they just might be too much..they're not, you're strong. WE'RE strong.

I think I'm giving myself a pep talk as much as I'm trying to give some of you one. My hubby, like I said, is at a concert tonight, going to play drums at church this weekend, and will golf one of these two coming nice weekend days. I'll participate in none of it, is my guess. It's my choice and I'm going to live with it guilt-free. I may choose to ride in the cart during his golf game, but the rest of the time is for me. Me and my little precious Wally, who gratefully makes me walk every day.

Thanks for listening and here's to self-empowerment and control when you feel you have none. Being alone and taking time for "you" is ok, it's perfectly fine, acceptable and necessary. I don't think anyone can realize that like a spiney - "me time" is precious and can be rare, so embrace it when you can and take good, good care of yourselves.

Peace my friends.


  • Cath,

    I can so relate to much of what you posted. I worked 8 more months full time after my last fusion before I had to retire. I would do what I could at work, and by the time I got home I was megga tired, hurting and like you wanted 'me time'. I also had to have 'rest' time so I could make it in the next day - some days I didn't.

    It is an adjustment, no question there. Just like it was an adjustment to retire from 'the job' and all. Where they say the big changes in our lives: Change in job, moving, death of a loved one, divorce; I think "becoming a permanent spiney" at least here, should be added. Lots to deal with each day that a 'normal' doesn't even have on the radar screen, but we tend to work it out. It sounds like you're still adjusting, but adjusting well. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Cathie, I'm so glad that you're enjoying your job. I feel for you though, I know exactly what you're talking about, but not only the "me" time, but the "we" time that I felt both myself and my hubby were being robbed of. It's exactly why I stopped working, because I was basically an immobile zombie when I got home. Because of that, I wasn't getting any quality time for either myself, or to share with my hubby. I know I'm lucky in that I'm in the position to not have to work, and I now can enjoy the "me", "we" and any other kind of time that I missed out on before.

    I hope you continue to love your job, and are able to enjoy your me time, guilt free, as it should be!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Cath,

    I have a word for that called "tam time". Trust me these days I needs lot more of that than ever before. But I have always enjoyed my space and my time, doing things by myself. While I enjoyed the crowds as well, I also like my time. I like to say I like me and enjoy spending time with me. But the difference is now what I do with my time. As I am sure your learning, that sometimes that time now is just quit time and relaxing. Like you with Wally, nothing better than having some time with mine. I used to feel guilty leaving her all day for work then going out in the evening, so I choose events she could always tag along with me on. You might check for some dog parks in your area, and take Wally and hang out while he plays and you read a good book or something. Just bring the comfy chair and a good book. He plays you relax and enjoy seeing him so happy. Plus if your shorting him on the walks the dog park fun will make up for it, lol. Watch out he might find a girl friend.

    Anyway never fell bad for not going along with the crowd, as that is the easy thing to do. It is okay to do the things you enjoy and relax on the weekend. Oh one more thing if you train Wally and license him as a assist dog, he can go anywhere with you, lol. JK Hope you enjoy your weekend.
  • My life a has been strange in that we had six children in our family growing up as well as a dad that worked and a stay-at-home mom. When I turned 18, I moved out that day.

    In junior and high school I was always very shy, an outcast really, but played the piano and wrote music for my few friends who invited me to parties for my songs, thus making more friends. Yes, I also did the "other stuff" (drinking to be exact), but all that changed when I moved out of the house. Like I said, I moved out at 18 and the only way to explain it is that I dated myself for two years. I didn't date anyone, took myself to movies, made myself candlelight dinners, etc., and eventually learned to love myself. I felt that if I couldn't love me, how could I love others and others love me?

    So I'm not only comfortable with being with me to probably a negative consequence, but I'm also able to love being with others. I'm even still my own counselor. I have to say, the strange thing is during the transition I made in dating myself, I lost my ability to write music. I think I exchanged extroversion for music writing. And it's a great tradeoff.

    Great idea about Wally. He does have a girlfriend, a mutt that's twice if not three times his size, but they're in love. And her mama is a 70-year-old fantastic lady and we now meet in the evenings for a walk after work instead of our mornings that we used to have.

    Sounds like you and I are generally of the same mind. Thanks for your words and friendship.

  • After being out of work over 2 years you have a big adjustment to make. Only being back a month is nothing. Now the reality is setting in. All that time you had at home before, your "me" time. It was actually too much "me time". For the most part it is unproductive to stay home all the time. Being retired is one thing. Simply quitting is another.

    Now you're back amongst the rest of us who didn't get the option to just quit. You'll have painful days and not so bad days. Your energy will come back. To a level better than it has in years. It'll take time. Welcome back to reality, sometimes it's rough.
  • Z06 said:
    For the most part it is unproductive to stay home all the time. Being retired is one thing. Simply quitting is another.

    Now you're back amongst the rest of us who didn't get the option to just quit
    Well, Graham, I wouldn't call what I did "just quitting". I just re-evaluated what was important to me, and I am lucky that I have the option to not work anymore. My relationship, and my living life, and not living to work, is more important than going to work and not be able to do anything else. Now, I can enjoy getting together with others, especially my family, which wasn't really an option when I was working. I now am able to do other things, like partake in hobbies, which I never had the energy, or was in too much pain to enjoy before while I was working.

    So, no, I didn't "just quit", I just re-prioritized my life, and am able to do the things that I had to quit doing while I was working, and am actually more productive for doing so.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Cath,
    I, too, feel your pain (or rather your fatigue)! I have not stopped working through my chronic pain and I gotta tell you it really does wear you down. I think my medical condition causes fatigue and the pain just adds to it. The worst of it for me is the fact that nothing has really helped the pain! (well until I got the SCS) My wife and myself are ready for the point where I can't work full time any more (or at all). My SCS is buying me time for the docs to figure out what is going on.

    Glad you like your job! That helps a lot! When you don't like it so much it's much worse!!!
  • Thanks for your post - I am preparing to return to work full-time next week and I keep thinking to myself - will I be able to do it and do it to a point where I can come home and still do all of my Mom things with my kids and not be too tired or in pain. It has me a little nerve-wracked but will do what I need to do. Your post has just helped me realize that if there are things I can't or don't want to do - it is OK. Thanks for that and good for you to recognize that you need your time for you to balance it all! I think that is always the trick is to find the balance and somedays we have it and other days not and to try not to let those unbalanced days out-weight the balanced days!
    Hope you are well - thanks! Take Care!

  • I'm sure we would all like to just re-evaluate and decide that living to work is no good. So we'll just stop working, stay at home, and have lots of "me" time. That way when our spouses come home from working all day. We'll be able to spend more time with them and family and friends. That's an awful lot of "me" time. It's pretty self-centered in my opinion.

    How about working part-time and helping out your SO? How about attempting to be an equal partner? Don't think your SO or the rest of us who work would love to quit and just have "me" time?

    What Cathie stated about needing "me" time because she comes home beat. That is very reasonable. Once she gets back into the swing of things she'll be able to make more adjustments.

    Staying at home just leads to being more and more lethargic. Pretty soon just going to the store to pick up a couple of things becomes your big chore for the day. It gives more excuses to become more complacent and do nothing. You loose contact with the rest of society. For people with chronic pain this just helps lead to more depression. I call it quitting. Call it whatever you want.

  • I had no choice as I couldn't get off the couch when I injured my back and I'm not allowed to work as an RN on pain meds. So I didn't just quit I couldn't go to work so I think there's a difference with having a choice and not being able to work.

    Due to the weakness in my left hand from my C-spine I'm unable to put the IV in the patient and twist the IV tubing in the cannula and due to my back I can't jump on a patient and do compressions during a cardiac arrest and I can't drive taking narcotics to be a visiting home Nurse. I can't push stretchers anymore and where I work there's no such thing as limited duty.

    Good for you if you can work and I applaud everyone who can but don't call it quitting call it whatever you want. I'm offended by this term. I have been told by an Orthopedic Surgeon during my Independent Medical Exam that I can't work and I get Government disability and work Disability and LTD. I also have a nerve test that showed nerve compression. You can't just say that to people "quitting whatever you want to call it" "Me time"

    I feel guilty enough as it is for not being able to work. No one needs an extra guilt trip in a support forum. I hope no one feels like their not supporting their spouse just because they're disabled. Man. Why aren't you an equal partner if you're disabled and can't work? Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Hey Cath, Great post!
    My time is now spent from being out of balance. dedicating all my energys and focus to school. now that ime out on a break before I go back I realise I was doing the same "pushing" for the last years before I was retired.
    I didnt realise the extent of how hard I was going until I last semester, I feel like ime falling apart very quickly.
    I dedicated myself to a goal and deprecated the torpedoes,
    Me time, was and is important.
    It is not selfish, or unkind to others if i back off to save myself a little I believe.

    It is like finding a new center of existence, from where I may foray into the world,and try to be the person I am...Not the person I wish to be, or want to be, Just simply the one thing I can be right now.

    We are all in the hands of time, walking on the sands of time..I think what we do with time is up to an ultimate motivation, fear, want, wishes?
    I think just acting on primal motivations isnt enough, have an all consuming drive to exceed yourself and your station. A true and clarion need for finding your happy.
    Good on You Cath for finding peace where and when you can!
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • Hey Cath,

    Glad to hear that you are enjoying the new job and sorry you've found out about the "do I stay home so I can go to work tomorrow again, or do I try to enjoy something" club.

    It's a lousy decision to have to make, it makes everything else horrible...and no, it is not natural. Sometimes you have to work... sometimes you want to work, but either way, there should be time for me time in the mix.

    I'm in the I stay home so I can work the next day club. I'm sure everyone around me appreciates the effort I put in to going into work and not having any life outside of it. (and yes, for those who might not get it... that's sarcasm).

    If I thought we could get by on my retirement pension and SSD, I'd consider it, but we can't, so to work I go.

    Hopefully, you'll start to build up a kind of "resistance" to the feeling so whacked at the end of the day and real life will kick in.

    Good to hear how you are doing!
  • Cathie,
    It has to be understood that working for some is not an option and that in itself is not quitting only being realistic in what your capabilities are, given the choice many more would work given the opportunity and it is hard when in constant pain to see that you have some options. One could view it that some are sufficiently enabled to be able to work and all the difficulties that in itself brings, I have said before that any bad day for me at work was never as difficult as thinking I had no other options stuck at home.

    As Cathie mentions, it is important to see how we have improved and how hard we all try to succeed for many we continue or return to work despite the pain, it is not that it is any less that facilitates a change in ourselves and we should reflectively acknowledge those seismic changes in attitude, strategy and behaviour than now are part of the new improved us.

    We have to be sympathetic to each individuals circumstance and a prescriptive strategy is not a one fits all approach, if we see those new beginnings as positive opportunities, we are half way to achieving them, it is now just the doing, feeling ostracised at the periphery is difficult, our past existence swept aside in what seems a moment, and the imposition of a challenging future.

    I have responsibility to share my well-time equally with all those who have some expectation, me time is a gift to myself, it does energise the future and keep that balance of self, responsibility and order of importance fluid, it is easy to opaque yourself in the melee of chronic pain, a vision of who and what we once were or achieved. Even when I could not stand up adequately I promised myself that in the future I would return to some form of employment and feel included,

    My question might be what was the catalyst that has driven your ambition and how differently do you now view those changes that initiated these strategic improvements.

    Take care and well done you, we need success here to shine the way for others to follow where possible.


  • for what it is worth... I cannot imagine anyone who lives with chronic debilitating pain everyday. My heart breaks for you and I wish nothing but some sort of ease of your pain if possible! I was in chronic debilitating pain for about 5-6 weeks when I injured my neck.. there were many nights where I cried and thought I cannot do this another day! I am so thankful that my surgery (while I am only 3 months post-op) has taken away the severe debilitating pain. I place no judgement on anyone who has to live with that pain day in and day out and you/we are not quitters - I would use the word survivors in everyway we know how! For those who can move on and work and do more things should be so thankful as I am .. for those who still can't - there should be no guilt as you are equal in our journey to one day be as pianfree as possible! I consider so many on this forum friends and so supportive to me in my time of need and hope I can be the same for others who also need that! Take care and best wishes to all!
    Cathie - love this post and good luck to you as you continue in the work world and in balancing that with everyday things and your own "me" time! finding balance is the hardest part and that balance is different for everyone!
    Have a Great Day my friends!
  • We have to be sympathetic to each individuals circumstance and a prescriptive strategy is not a one fits all approach, if we see those new beginnings as positive opportunities, we are half way to achieving them, it is now just the doing, feeling ostracised at the periphery is difficult, our past existence swept aside in what seems a moment, and the imposition of a challenging future.
    Thank you John, once again very eloquent. To me, the key words that pop in those sentences are "sympathetic to each individuals circumstance", and "see those new beginnings as positive opportunities".

    Because I openly said that because I had the opportunity to, I stopped working, so that I could enjoy life more with my husband, I got called "self-centered" and not being an equal part of our partnership. What some people don't know, is that for reasons that are only our business, I've actually been supporting my spouse for 3 years, living on only my income. Never once did I think that my spouse was not an equal part of our relationship, as he does not think that way of me now. And the fact that once I'm released from the military, I will be receiving my full pension. Or that I did try to go back to work under our Return to Work program, and couldn't manage to work the 2 1/2 hours a day that I was, because I can't sit for more than a few minutes, or stand, without pain that envelopes my entire body, not just one part of it, let alone making multiple appendages go numb. If having a sense of entitlement to give myself a break after doing the things I've done and seeing the things I've seen after 19 years in the military and finally accepting my weaknesses and limitations is self-centered, even though the decision for me to stop working was made by both my spouse and I, then I guess I really am.

    Or being told that soon just going to the store will become my big chore of the day. Even though I volunteer with my peer support group for serving and formerly serving members of the military who suffer with PTSD, as I do. Or that when my release goes through, and my spouse and I move back to Whitehorse, I will be setting up and running the same group, as well as volunteering with the Legion and the Air Cadets, as I did when I was posted there. Oh, but wait, I'm self-centered, so why would I be volunteering to help others?

    Also, that I still plan on finishing my diploma for Addictions Counselling. That's just one thing I've had to put on the back burner for now, due to the daily headaches, and multiple migraines every month I suffer from. But because I'm no longer working, I will become more depressed and lethargic. Because I have nothing to do and do nothing during the day, even with the volunteering and ability to get out and about and enjoy life more. Because I have been able to start new hobbies to keep my mind and hands busy, that I did not have the energy or attention span to partake in while I was working. Because my spouse and I are happier now that I'm no longer coming home and crashing because of being in excruciating pain, and we're getting out and doing more. Yes, that is very depressing indeed, especially since I'm losing contact with the outside world, in spite of getting out of the house more, to different places, seeing different people, instead of going to work and coming straight home and not socializing at all like when I was working.

    Man I love people who pass judgment without knowing the details.

    If accepting my limitations and lack of ability to work even part time, thus stopping work, enjoying life, my relationship, accepting volunteer work, getting out of the house and socializing more, being able to stand a little longer to make dinner, to go shopping, to visit with my family more before we move literally to the other side of the country is quitting, then colour me whatever the colour of a quitter is. That's what I am. And I'm loving life now. This is my new beginning. Although I do still have bad pain moments, days, and even weeks, I'm still doing more and am more productive than what I was when I was working. But that's just me.

    Cathie, again, I am so happy for you that you've achieved your goal of getting back to work, and that you love it! Although you've lost a lot of the "me time" that you had when you weren't working, good for you for still putting aside time for yourself. You absolutely should not feel an ounce of guilt for doing that, just as a person who can no longer work should feel an ounce of guilt for accepting that limitation and striving to have some quality of life in their own rite. Congrats again, and keep sharing more of your achievements as they come!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • I think we have to accept that there are going to be people that think differently than we do.

    Life isn't always fair... sometimes good things happen to bad people and vice versa... what can you do? Some people may seem bitter because they do not have the same options as others.... even when or especially when those same "options" are not what they wanted.

    And don't forget... opinions are like... (can I say that here?) hmm... I'll say rear ends... everyone has one and sometimes they stink.

    Also, try not to let the opinions of people that have no bearing in your life, make you feel badly.

    sorry for the hijack too... I just don't want to see another valid (and valuable) post get locked because people have differing opinions.
  • It sucks - it truly does. It does leach every bit from you by weeks end. I hate every minute of it. But, sometimes quitting is not an option so you do what you have to right? You'll find a way to make it work. I just go till I drop - period and take more drugs. Sometimes that's just the way it is when others or other things are depending on you, you just do it and push thru. I find my life much less enjoyable than ever because I feel I must not let my son down, my animals, I must pay those GD bills, etc. Probably why I drink too much and swear too much and have little tolerance for other people's trivial bullshipple.. Take care honey, it will be o.k.
  • Just ignore the negative posters. I sense misdirected jealousy in their writing. Best to ignore it and hope they stop abusing their right to post in what should be an unbiased, supportive/nurturing forum.
  • [my edit] *Missed the retired* portion.. Apologies Sir Graham. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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