Need a shoulder..... or maybe some cheese

Discussion in 'The Watercooler' started by timer lady, Jun 1, 2008.

  1. timer lady

    timer lady Queen of Hearts

    Pace yourself be damned! I hate whatever it is going on in my body. There I said it.

    Yesterday was a beautiful day - mid 70's, bright blue skies. And I'm inside sleeping the day away. husband woke me to make sure I ate a carton of yogurt so I could take my noon medications & I was back asleep within the hour.

    husband woke me around 3 or so. He was running some errands & wanted to know if I had any ideas for dinner. I screamed at the man - hadn't given dinner a thought.

    I started sobbing; told husband that I should be out playing 9 holes of golf & then hitting the store on the way home. Instead I'm laying there sleeping a perfectly beautiful day away. At the very least I should be working in my yard & planting flowers. Anything but this.

    All these doctors keep telling me that the recovery period will be long......recovery from exactly what & how long? That's what I want to know. All of these half ***ed diagnosis's are just that - half ***ed!

    I'm grieiving for the many losses over the last year or 2. I'm doing my best to maintain a positive attitude but this weekend I'm struggling.

    The docs keep telling me I'm in for a long recovery period & they don't know to what extent I will recover. What the heck does that mean???? And they are referring to the Cushings Syndrome. What about the other issues? I'm afraid to ask so I don't.

    I'm angry as well & again doing my best to maintain. I'm tired of being so very isolated, not being able to remember things & of being so very exhausted & in pain.

    Okay - done whining for the day. Just needed to get that out of my system before husband wakes up & kt gets home from respite this afternoon.

    Thanks for listening ~ I really appreciate the ear.
  2. Wiped Out

    Wiped Out Well-Known Member Staff Member


    I think your frustration and anger is so valid and I can imagine on a beautiful day like yesterday the frustration being even higher.

    I wish the doctors could give you more of a time line. I wish I could wave a magic wand and make all the pain and tiredness go away. Since I don't have that magic wand I keep you in my prayers daily.

    Vent away....any time.....we are here for you.
  3. tryinghard

    tryinghard New Member

    I am sorry for your pain...I hope you feeling better very very soon,,,,HUGS
  4. Josie

    Josie Active Member

    I'm sorry for your pain and frustration.

    As you might know, I am going through a similar situation with my daughter. I have found it helps to keep a journal of her symptoms and activities each day. I record them on a calendar which shows the whole month on 2 pages. This forces me to summarize and makes it easy to see a pattern. Sometimes looking back at how it used to be helps me focus on the progress being made.

    I hope you are able to see some little bits of progress.
  5. crazymama30

    crazymama30 Active Member

    The not knowing is horrible, we have/are going thru similiar things with husband, but his symptoms are not as severe. I hate to think what would happen if it was me who was going through this, husband is not very resilient.

    Whine away, and I am passing the brie. You have every right to feel that way.
  6. hearts and roses

    hearts and roses Mind Reader

    {{{Linda}}} Go ahead and vent, whine,'ve had a long hard time of it and with the comments the doctors are saying, we sure don't blame you for feeling sad about missing a sunny day. I sure hope the recovery begins to feel better and different...perhaps you will have a couple of really great days mixed in there.

    Is there any way H could set up a spot outside for you to doze? Just being outside under a tree might be uplifting. Sending hugs and keeping you in my prayers.
  7. Jungleland

    Jungleland Welcome to my jungle!


    Linda, I am so sorry about your illness and how sad/frustrated you are right now. I can only imagine how you must be feeling.

    I pray the docs will have a more definite time line for you soon. The not knowing must be horrible.

  8. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    I pm'd you with something I saw last night about cushings. Hope today is a better day.

  9. Abbey

    Abbey Spork Queen


    First of all, I'm impressed that a couple of your words didn't get censored. You must have special board powers. ;)

    Hoping you are having a better day today. I'm sure it's quite frustrating.

  10. dreamer

    dreamer New Member

    Hmmm, my shoulder is a mess, has been so sore for months, and I have no cheese, not allowed in my new regime...:) But I do have a different perspective I can share?
    I am not sure if the docs are being somewhat misleading if they continue to speak of "recovery". Chronic illness is life altering, for sure. I am sure you will make some "progress" and things will improve, but, unlike an injury that heals up good as new or the measles that go away, your illness, as you have seen, can change things. Some medications can make some things better, but can also make some things not quite the same, anymore.
    Sleep can be restorative, and can help the body heal more.
    When I was pre my illness- I used to resent sleep, resent taking time to eat- goodnes there was just SO much to DO. For decades I slept 3 hours a nite tops. I ate once a day (dinner) and was on the go the rest of the day. My work was very physically demanding and it seemed to energize me to work.
    I now eat 5 small "meals" and sleep 5-7 hours most nites. For several years I slept 2 hours, was awake but immobile 2 hours- round the clock. I found it very frustrating. Turns out I used up my positive energies resenting my need to sleep, and in doing so, I blew off my opportuniies to enjoy my awake time. When awake I was either screaming in extreme pain or angry about being so ill.
    My very very dear aunt then passed away and it made me even angrier. While I was busy being angry that she was taken from me, my best friend became ill and lived an even worse hell than I and then she passed away. That stunned me. (she was much younger than me) Before I could take a breathe from that loss, my mom became very ill and my son poked out his eye. And my husband landed in ICU, all at the same time. Mom died, so lost his eye and husband sorta recovered- relatively speaking.
    All in about a year.
    Gradually I learned that Life is constant change. Life is also too short. I have slowly learned to enjoy the cold and the nitetime almost as much as I enjoy a beautiful spring day. I slowly came to make my bed up in colors and fabrics and textures I love, -LOL- previously I had not even had any idea that there were fabrics I liked better than otthers, LOL, never thought about it before. For those times I MUST sleep- I now do so in a room I adore....for the times I must take things slower than I prefer, I have colors and patterns around me I enjoy.

    Friday my difficult child began a new job- careing for a lady my age who was in a car accident 20 years ago and made her a quadriplegic. I am no stranger to such things, for I was a long term caregiver for years. BUT this specific lady lives difficult child puts her to bed at nite.
    This lady decided she wanted to meet difficult children mom, to assure the mom that her dtr was "safe"? SO she invited me in to her home. She is strapped in a wheelchair, in her one bedroom apartment......her living room has murals on the walls simulating a tropical beach, and her friends laid felt on the floor to look like a sandy beach, and laid seashells all around, and there are fake palm trees and real plants around. She has beach furniture in her living room. Her bedroom is done fairy princess style- complete with a pink & purple filmy guazy canopy over her bed.
    It really hit home for me just how important it can be to surround ourself with things we like-----so that we can take advantage of pleasure.

    when my oldest child had such difficulties in school, I had to slwoly readjust my expectations to fit what she was capable of. As my husband grew more and more mentally ill, I had to learn how to go with the flow and live thru that. ALl thru alll that, I held tight to my abilities, especially my physical abilities. It was such a giant shock when my body "failed me" becuz I built my whole life upon my body carrying me thru all crisises. I depended on my physical abilities to permit me to work incredible long hours at very physically demanding jobs, and all of a sudden BAM! My body let me down BIG time. Very very slowly I have been struggling to learn how to work in partnership with my body and it's new needs.....and of course, just when I think I have a good momentum going on, something new jumps on the tracks and tries to derail me. (The most recent is the diabetes and liver damage and Cushings and high blood pressure)
    And just when I think I understand difficult child and she is on a good track, my easy child jumps up and begins to make me nervous about just what HER status is.

    Yes, you might be sleeping more, and it might be inconvenient, but- I am sure when you ARE awake, you can begin to find things you love about the time you are awake, too. I know you miss golf, but I know you love your art. If you cannot be outside in the yard planting, can you get some sunflower seeds and pots and plant them inside? Do you have an indoor herb garden? difficult child got me a Chia herb garden for my birthday in March.
    We brought a hanging planter indoors and put some impatiens in it for the days when I cannot handle going outside. (I love impatiens)
    2 summers ago, I wanted so badly to watch fireworks, but was afraid I might fall alseep.....we took a comfy chair with us, and yes, I did doze off and on thru the events leading up to the fireworks, and I think I dozed off in middle for a short spurt, but--I KNOW I was awake for the start and end.....and the kids worked hard to make sure I GOT to our "spot" in plenty of time. (they carried everything across the field, while I used my scooter to get there) They even put up a beach umbrella and yup- I napped until it was time for my fav part of the day. (the fireworks)

    Hang in there....right now your body is trying to do what it needs to do. Try to be flexible.....I know you are creative- you will figure out ways to cope and adjust. Maybe your husband has some creative ideas, too, to help? Think about what your most important personal goals are.....your top priorities, and figure out how to focus on those things. Use your time and energy for the things you find to be most important to YOU.
    Yes, there are now days when my biggest priority is simply a nice dinner, whether I cooked it or it was ordered in. Or even just a simple peice of fruit, that can be my highlight of my day some days. Some days it is just a cloud formation I saw thru my window. Or just the taste of my first cup of coffee-------I am learning to relish and treasure such tiny things. Some days it is the sound of our smallest kitty purring beside me or knowing my doggie loves me unconditionally- it warms my heart, makes my whole day. Hmmm, back when I was working my job 20 hours a day, I had no idea just WHAT any cup of coffee REALLY tasted like for sure. And I doubt I ever stood still enough to even be aware my kitty purred at all.
    SOmetimes I wonder if maybe I forgot to stop and smell the roses along the way so someone put up this giant brick wall for me to smash headfirst into to make sure I WOULD stop and smell the roses? Well, if so, it worked! LOL- some days that seems to be the ONLY thing I CAN do is to smell and smell and smell those roses cuz my face is sorta stuck there with those roses up my darned nose. LOL. I am slowly learing to be grateful it is roses and else I had to stop and smell along the way?
  11. Abbey

    Abbey Spork Queen

    I think I'd collapse without cheese or milk. It's the bulk of my diet.

    So sorry for all the pain and loss. It seems life throws you these things in packages, not spreading them out.

  12. flutterbee

    flutterbee Guest

    Linda -

    I totally understand. Some days I want to scream and some days I just have nothing good to say to anyone cause I feel so lousy and am so frustrated and so sick of it all that I feel toxic and some days I don't have the energy for either. And then some days I feel like I can take this thing on.

    It's ok to feel this way, you know. You're allowed to grieve what you've lost and the dramatic changes it's brought to your body and your life. You're allowed to be angry at this illness and what it's done to you. You're allowed to feel betrayed by your body. You're allowed to be frustrated because you are still waiting on some kind of answers that will at least help you understand what you are in for and where to go from here.

    Acceptance is a process. My GP told me last week (or was it the week before...I can't even remember) that I will probably never get back to where I used to be. As devastating as that should have been, it wasn't. It was hard to hear, but I think I've had time to get used to the fact. Doesn't mean I like it. I hate it, actually. And it doesn't mean that because I've accepted this fact that I'm not angry or frustrated. I'm both. But, at least these things don't knock the wind out of me as they used to. So, I guess I'm getting there...a bit closer to acceptance.

  13. witzend

    witzend Well-Known Member

    I'm so sorry Linda. I know how difficult it is to no longer be able to do the things you used to enjoy. You must be getting very impatient.

    Yesterday I did a little sprucing up in the yard. I had to take Vicodin just to start so that it wouldn't hurt so bad and I could make it through. I ended up with a horribly pulled groin and tendonitis in my foot and calf. It happens more and more now, and every spring I go through the same battle, only a little worse than last year. Every year I mourn because "next year I won't be able to do this". I am recognizing that I'm missing out on life and I need to break down and get a scooter. But even that gives me a little bit of hope. If I could get a scooter and figure out how to get it in and out of the house and get some level pathways in the yard, I could go places I haven't been to again.

    I know that the practicalities of getting and using a scooter are a long way off. And that it's a huge move on my part to accepting that I am disabled. But it will also make a lot of my old world accessible to me again.

    I know it's hard to sit in bed and recover, and to work through the pain and weakness when you don't actually feel well enough to do it. Try not to be sad and to grieve for what you are missing out on. You'll find a way to enjoy those things again, or new things to enjoy.

    {{{{{{{{Big hugs}}}}}}}}
  14. TerryJ2

    TerryJ2 Well-Known Member

    Oh, Linda, I'm so sorry. I know how hard it is to lie there when it's gorgeous outside.
    Dreamer has some good ideas ... small container planting, quick watercolors, that sort of thing can take you a long way.
    I'm sending lots of cyberhugs ... {{{ hugs }}}
  15. totoro

    totoro Mom? What's a GFG?

    Linda~ Scream and yell all you want. Take a pillow hit it yell into it! You know what? It is your mind and your body, if you want to and need to mourn what you have lost today or tomorrow you have every right to. You love golf, if you can't do that right now, it is OK if that pisses you off. Don't bottle it up. Let it out, and I do hope the next day is better for you, slowly. Give your body and mind time. I know you have, but your body NEEDS more...
  16. Star*

    Star* call 911

    Linda -

    Sending hugs and a suggestion that I used to help husband when he felt exactly the same as you - (stuck inside on a beautiful day) We got him a free standing hammock. The shape didn't harm his back - he did need help up and out of it.....but it allowed him to sleep with the breeze and outdoor noises.

    It sounds odd, but it helped. Maybe give er a whirl - and if Money is tight? Put it on your local freecycle as a wanted item - you never know - you might get one for free.

    Hugs for your frustration - prayers for your recovery.

  17. gcvmom

    gcvmom Here we go again!

    I don't know what I could say that hasn't already been perfectly said by Dreamer.

    Chronic diseases are life changing. I have one difficult child with Crohn's. It was very hard for him to cope with at first -- feeling crummy all the time, all the pills, all the tests, procedures, food restrictions, coming very close to surgery...

    Went through some temporary Cushing syndrome from prednisone treatment for the first six months of his diagnosis (moon face, mood swings, depression, thinning skin, bloating, acne, sweating). Had to make major adjustments for diet, medications and their side-effects, etc. Life suddenly became very medically oriented for him. That's really hard when you're in the 5th grade.

    Forgive me for not remembering your particular circumstances -- I hope it's something that can go into remission like my son's disease has been able to do for now. It took two years for him to get here, thanks to a doctor who is at the top of her field and got him on the right medications.

    I'll send up prayers for healing for you, and for peace and serenity for your spirit.
  18. timer lady

    timer lady Queen of Hearts

    I've had some time to consider all the replies (thank you for the support, hugs & suggestions).

    I'm in a funk, I know. dreamer, I think you're right in that the doctors keep saying "recovery". I don't believe that anymore & need to shift my mindset. I keep believing that I'll be out on the course by October, or at the very least putt putt golf. (Hate putt putt golf) I keep believing that I'll be able to get immediately back in shape once I get off the prednisone. That's not going to happen.

    It's going to take surgery to fix my drooping eyelid & that's not a guarantee.

    I'm going to look into a hammock or maybe a chaise lounge for our patio. My therapist last week suggested that I get in home therapy because of my level of weakness & how much it took out of me to get out for appts. Not willing to go there yet.

    I continue to do my 3 one minute laps about my living/dining room. I'm doing various PT exercises to keep my strength up in my arms. I keep dropping my paint brush ~ that scares me. Since the decrease in the prednisone I'm losing my grip in my right hand again.

    I'm rambling, sorry.

    Again, thank you. I will be copying & keeping this as a reminder & for encouragement. Just need to change my mindset. That's all.
  19. busywend

    busywend Well-Known Member Staff Member

    Linda, perhaps you do need to change your mindset. But, that does not mean you are not allowed a whine now and then! Or an all out banshee cry.

    Yes, you probably needed a boost in your self-talk speech. I can see that coming here helped you to do that.

    I love the hammock idea. What great sleep that sounds like!

    I wish there was more we could do. I am sure your 'real life' friends and family feel the same.

    Hang in there! HUGS!!!!!
  20. dreamer

    dreamer New Member

    Linda, I sincerely hope I did not sound like a heartless monster witch earlier.
    Yes, of course you can scream and yell and even cry. I still do sometimes, myself. Too often I feel it is all so unfair. But then I also kick scream and cry becuz so many things are so unfair. I also tantrum over difficult child being so homebound, and husband being not even close to who/what he was when we met (yesterday was our 23rd year of living together, whew! time flies!) and I cry often over my sons eye.
    But after my tantrum or cry or vent etc, I regroup, then take a nap that the tantrum caused me to need to take and then head off doing what I still can do....and I am guessing you also do the same.
    We would not be "normal" if we just simply quietly accepted such profound change in our abilities.
    I am sending you many hugs, gentle ones, and wishing for you a more peaceful day for your soul today. Take a deep breathe, smile at that bird out by your birdfeeder, give kt a beautiful mommy smile, and have a good day!