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    Old 12-31-2013, 01:55 PM   #1
    WhistleDixie
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    Ho-Ho-Hope?

    Is there HOPE for the New Year? I don't mean to be negative, but I can't possibly be the only one who's feeling this way. I guess I'm just looking for those of you who, like me, have gone through the motions (once again) of the "holiday" season, trying to keep everything merry and bright.

    It doesn't help matters that while my grown siblings were nestled all snug in their beds (at my house)...visions of enemas danced in my head. Yep...on the floor of my bathroom in the warm glow of the nightlight...2 to 3 times a week. (TMI but true...2 much Lortab = no #2). Well...I did it ALL for EVERYBODY...as always, but here I am again wondering why? I am alone (unable to eat, sleep or poop) and exhausted from all of it.

    I won't belabor my dysfunctional family situation. I opened those veins in a Thanksgiving post that no one wanted to hear. The short version is that my mom (87) is in a living facility for going on 9 years now. I am the youngest of 6 and have moved back to my hometown where 2 of my sisters live. I TRY desperately to bring the family together throughout the year, but especially for the holidays. It's painfully obvious no one else in my family is willing to help me...physically, emotionally or financially. They don't seem to even want to be here to spend time together.

    I have to finally face that it's never going to be better. I cannot continue to MAKE this happen as my health deteriorates. I've never been one to take care of "self". I delude myself into thinking everything's fine as long as I can do enough, be enough, and repeat. It's NOT.

    This past year was the proverbial straw, with my struggle to once again pinpoint the sources of my pain and "fix" them. Well, after 8+ specialists and thousands of dollars worth of testing (woo-hoo) They say I can't be fixed. I have embraced the fact that I need PM. Thankfully I have a consult scheduled for mid-January.

    I know that many of your health struggles far surpass mine. I appreciate the kindness you've shown me since I joined this sight last Fall. Your words of comfort have been a Godsend to me. PAIN is a lonely place to be in. It's good to know that I have you all to talk to and to listen.

    I've deleted most of this post...thankfully...But not before saying I truly HO-HO-HOPE that 2014 is a better year for us all=)

    Last edited by WhistleDixie; 12-31-2013 at 01:58 PM.

     
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    Old 12-31-2013, 07:20 PM   #2
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    Re: Ho-Ho-Hope?

    So sorry you are struggling. Definitely please continue to have hope. Good luck with the PM consult. Once you find a good fit, having good pain management is quite life changing. I can say that 2013 has been a good year for me. In the 7 years prior to that I was developing a couple new health conditions a year, and didn't have adequate pain control. It is very important to take care of ourselves, but I agree its tough to learn to put ourselves first and say no to our loved ones when we can't manage anymore.

    For the #2 issues, have you tried Miralax? Its an osmosis laxative in the form of an otc powder you mix into a beverage. Little to no gastro side effects, very safe, and there is no maximum dose. Much more effective and gentler than the other stuff. I'd start with a capfull daily and increase every few days until things get moving.

    I take a capfull of that each day, plus Senna (2 of the 8.6mg tabs twice a day). I had to add the Senna to help move things along as too much Miralax for me just turns everything to mush.

    It takes some time to get into your system, but once you find the maintenance dose, it works for most folks. It mixes best into something warm, but if you give it time, it will mix into anything with little effect on taste (except water lol). If it ends up working, the Costco generic seems to be priced best.

    My record was 9 days. Never want to do that again! Very important to keep things moving. As a side note, for me, adding fiber to my diet makes things much worse. If you take fiber supplements, etc, you may try stopping those and only using the Miralax. Best wishes.
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    Old 01-01-2014, 12:08 AM   #3
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    Re: Ho-Ho-Hope?

    Thank you, Tgirl...Yes, I am hopeful for us all in the coming year. Yes, I'm working on putting myself first, before I can take care of SO many others who expect too much of me=)

     
    Old 01-01-2014, 04:44 PM   #4
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    Re: Ho-Ho-Hope?

    I understand what you are saying WhistleDixie. I have gone through so many stages with my 30 years of my blood disorder/immune deficiencies/cervical issues. I have finally had to accept that my blood disorder can't be "fixed" but I now have doctors who are attempting to manage it.

    You know what I have been going through with my neck/back pain. When you can see no light at the end of the tunnel, it can really get you down.
    .
    I tend to put so much pressure on myself, more than my family does. I find that I am always trying to prove that I can push through the pain/fever......blood, but I really showed everyone this time didnt I?!

    Maybe we should both make New Year's resolutions to put ourselves first!

    You have helped me so much WhistleDixie, so if nothing else at least we can all be here for each other. We can be each others hope when things get tough!

    I hope 2014 brings you good news from your new PM doctor and a least some form of pain relief!

    Sarah

     
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    Old 01-01-2014, 07:35 PM   #5
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    Re: Ho-Ho-Hope?

    Hello SK...Please tell me how you're feeling tonight. Are you still in the hospital? Yes, I could use support. I also hope that I can provide some for you as well. We face many challenges in the New Year. Perhaps if we uplift one another...we can make it through=)

    Look forward to a status update...okay?

     
    Old 01-01-2014, 08:35 PM   #6
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    Re: Ho-Ho-Hope?

    Quote:
    Originally Posted by WhistleDixie View Post
    Hello SK...Please tell me how you're feeling tonight. Are you still in the hospital? Yes, I could use support. I also hope that I can provide some for you as well. We face many challenges in the New Year. Perhaps if we uplift one another...we can make it through=)

    Look forward to a status update...okay?
    WhistleDixie,
    Unfortunately, I am still in the hospital. Waiting to see if my clot will dissolve on its own or if they will have to go in & break it up.

    So, when is your PM appointment in Jan? Hopefully they will give you some good options. Didn't you say the fentanyl patch gave you good relief? Perhaps that will be offered by this doctor?

    Here's to a reduced pain 2014!

    Sarah

     
    Old 01-06-2014, 12:28 PM   #7
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    Re: Ho-Ho-Hope?

    So sorry to hear your story and I understand what you are going through, as so many here can.
    I've been dealing with chronic pain since after my cervical corpectomy back in 2011.
    I've gone through the gambit of medications, injections, physical therapy, acupuncture and even a faith healer.
    While we haven't given up, it does get old, and although I am still working with doctors and will probably try some new things this year, I get what you are saying about being tired and trying to find the light at the end of the tunnel.
    I also get about family and especially the holidays. We ended up hosting Christmas for my wife's side of the family. After that my pain was awful for a few days. So much couldn't get together to see my side of the family. Of course part of the problem is they can't seem to come see me and expect me to come over to their house and drag my heating pad, pillows and medications.
    This past week I've really been a littler bitter toward my family. You see along with my chronic pain, I got into an accident last week. In a store parking lot a car ran into me (not in a car, me!) and knocked me to the ground. I went to the e.r. and am ok, just scrapped up, but you would think my family would want to come and visit me! No, they still expected me to drive over to see them. So I just told them no.
    The sad thing is I really want to see my young nieces and can't unless they are brought over here.
    So I really get the family stuff. My wife and I talked long about this over the weekend and I know I just have to let this go and accept that is how they are. I know they have their stuff going on and they do care for my father, but it would be nice to see them more. Of course they have never been very good at this, and all my life I've had to deal with things on my own. If I didn't have my wife and her family, I'd be all alone. Thank goodness for them!
    Sorry no real answers here, but wanted to let you know it's not just your family. I guess when you go through these things in life you really find out who you can count on.
    Hope you are doing better and keep posting when you need advice or need to vent, it's a good place with many people who truly understand.

     
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    Old 01-06-2014, 01:33 PM   #8
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    Re: Ho-Ho-Hope?

    Quote:
    Originally Posted by cspineguy View Post
    This past week I've really been a littler bitter toward my family. You see along with my chronic pain, I got into an accident last week. In a store parking lot a car ran into me (not in a car, me!) and knocked me to the ground. I went to the e.r. and am ok, just scrapped up, but you would think my family would want to come and visit me! No, they still expected me to drive over to see them. So I just told them no.
    The sad thing is I really want to see my young nieces and can't unless they are brought over .
    Cspineguy,
    I'm so sorry about your accident! That is awful!!
    I too understand about wanting to see your nieces. My husbands brother passed away a few years ago and we have had a hard time staying in touch with our niece & nephews. My sister-in-law, who I have always been close to, kept making excuses about why we couldn't get together over the holidays. I know it must be hard for her, but we are the only link to their father.

    Family can be very confusing & frustrating!

    I hope you find peace in the new year!!

    Sarah

    Last edited by SK59; 01-06-2014 at 01:34 PM.

     
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    Old 01-06-2014, 06:47 PM   #9
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    Re: Ho-Ho-Hope?

    Hello C...I'm sorry for your chronic pain issues, not to mention your accident this weekend. Are you certain that no bones were broken? We all know that being "battered and bruised" is often more problematic. Thank God you weren't fatally injured=)

    I certainly understand the woes of family relationships...or the lack thereof. The holidays just take a lot out of us, don't they? My husband jokes that if we died simultaneously, our bodies would be skeletonized before family even checked by=) I disagree. Vultures show up to pick the bones, right?

    Gotta laugh...even when it HURTS!

    I hope you feel better soon...

    Last edited by WhistleDixie; 01-06-2014 at 06:49 PM.

     
    Old 01-06-2014, 07:15 PM   #10
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    Re: Ho-Ho-Hope?

    Thanks. I did go to the hospital e.r. and they checked me out. I'm going to my primary next week to follow-up.
    But it has taken a lot out of me. Been very sore!
    That and the family stuff hasn't been too great. If people only knew what just getting by day to day, and what holidays and events have on those of us dealing with chronic pain, maybe that would open their eyes and hearts a little more.
    Thanks again for your support.





    Quote:
    Originally Posted by WhistleDixie View Post
    Hello C...I'm sorry for your chronic pain issues, not to mention your accident this weekend. Are you certain that no bones were broken? We all know that being "battered and bruised" is often more problematic. Thank God you weren't fatally injured=)

    I certainly understand the woes of family relationships...or the lack thereof. The holidays just take a lot out of us, don't they? My husband jokes that if we died simultaneously, our bodies would be skeletonized before family even checked by=) I disagree. Vultures show up to pick the bones, right?

    Gotta laugh...even when it HURTS!

    I hope you feel better soon...

     
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    Old 01-08-2014, 01:23 PM   #11
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    Re: Ho-Ho-Hope?

    Hello everybody...I'm just wondering how all of you are doing as we are "moving" into the new year. I know that the dismal cold weather can truly affect our physical pains, not to speak of our "moods". I wish there were some way that we could check in regularly on one another just to say "hey...I'm thinking about you...You matter to me".

    I personally, even with the day to day chaos of contracts, bids, proposals, deadlines, FEEL SO ISOLATED in my "masked" world of hurt and sadness. I cannot (or will not) let others into that world. There are days that I feel SO alone even in a boardroom filled with colleagues. That's business...always the mask of being a professional. No one wants to know the truth. No one cares.

    Do you ever LONG for a friend (or just my sisters, who should be my friends) to sit by the fire with a cup of coffee and just chat? God knows I do. I've reached out to my sisters time and time again, but they don't reciprocate. They're both retired. My husband and I have our own business that we bid contracts, so my hours are always flexible. It's not as though we don't have the time as sisters to spend together. We live within a five mile radius of one another.

    I'm sorry for the WHINE. I'm just feeling sorry for myself, I guess. I've been on a long odyssey for months now seeking some kind of relief for my physical pain. This has also affected my already severe depression to the point that I think I need to seek some counseling. I'm hopeful that my consult with a PM this month will begin a new plan of managing my pain issues. I've got to find the courage to seek a counselor once again to help me deal with my heartbreak regarding family.

    I've come to the realization (IN MY FACE) this holiday season that my family has disintegrated. I cannot force them to come together or to love me. LOVE is a verb, an action. I've bought their plane tickets, shuttled them to/from the airport 1.5 hours away, hosted the holidays with the only helping hands being my husband. We've transferred my mom to and from my home/her nursing facility to spend time with everyone (she's 87, dementia, wheelchair bound). We have over-extended ourselves physically, emotionally, and FINANCIALLY to prevent not only my husband and me, but also my mom from feeling isolated and alone during the holiday season. It just leaves me so empty and sad=(

     
    Old 01-10-2014, 09:08 AM   #12
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    Re: Ho-Ho-Hope?

    WhistleDixie,
    I'm sorry you are feeling so lonely. It's hard to be around people who don't understand CP. I understand all too well putting on a "mask" and going out into the world. I am well known for telling people I am "fine" and ending up in the hospital the next day.
    Maybe we have to do a better job of being honest about how we feel-not becoming complainers, nobody wants to be around that, but removing the mask and saying "no I can't do that today", or "I would really lke some company today, could you come over and enjoy a cup of coffee with me?" We have to "let people into that world". Not a vague invitation, but a "I would really like to spend time with you".

    Sometimes I am not clear about my needs and I feel that is my issue. I found that out at Christmas. It wasn't that people weren't willing to help, I wasn't asking. I was trying to make "the perfect Christmas". I guess I showed them!

    Loneliness & depression, I feel is very difficult to avoid when you are dealing with chronic pain & illness. My doctor even told me that almost everyone who has a chronic illness suffers from some kind of depression. We just have to be willing to seek out help and not be afraid to ask.

    Please know that they are a lot of people here who care and are always willing to listen.

    We care about you WD!

    SK

     
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    Old 01-10-2014, 10:45 AM   #13
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    Re: Ho-Ho-Hope?

    Hi dixie, All of my nieces & nephews are college age or there about, 20 something & are so bright, loving, interesting, open & so willing to listen, well traveled & have alot to say & want someone to listen, easy to talk to compared to some of the older adults with all of their hang ups & now that they are older having a friendship with each one has enriched my life so much that seeing them all made my holidays with extended family so much better! Just being an aunt to them & now their friend by phone calls or little messages & sharing photos, visits & presents opened the door to having more family that cares & more love to dispel the loneliness & isolation in pain. I wondered if your sisters that live close have grown children that you could invite over to talk,have over for holidays, etc,just an idea that maybe you havent thought of possibly. Im sorry that you are going through a rough time & maybe now that we are officially in 2014 & the holidays are getting further behind us you will start to feel better soon. I hope so!

    Last edited by gmak; 01-10-2014 at 10:58 AM.

     
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    Old 01-10-2014, 03:32 PM   #14
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    Re: Ho-Ho-Hope?

    Thank y'all for listening to my "whine"...I have nieces and nephews (a couple of great nephews even, because my sister is so much older). All have graduated college, some have married with children...some not. One of my nieces just had her "hooding ceremony" as she received her doctorate in guess what? Yep...go figure...psychology. My family dysfunction provided vast material for her assignments over the years @ Baylor=)

    I find that most of their generation is narcissistic and self-absorbed, lost in "digital dementia" void of compassion and empathy. I just can't see my niece as someone's therapist. She won't have any problem with "distancing" herself. She is detached and consumed with self by nature. No offense...but I don't enjoy the "young ones". They spend their time checking their phones, oblivious to the effort it takes to prepare a meal, much less host the family.

    It would be funny, but it's not. The niece that is a doctor told me she'd help prepare Thanksgiving 2 years ago, since she had married. She claimed that she and her husband LOVED to cook and could "kill it" (hate that expression) in the kitchen. I only wish I could convey how shocked I was to discover they did not know how to boil eggs=( They debated the need to wash potatoes before peeling them to boil and mash. They ended up placing the 5 lb bag in the sink and running water through, using the perforated plastic potato bag (say that 5 times fast) as their colander. Oh, my...

    (to be continued) Y'all take care for now...I'll be back later. I promise this story will make you laugh and take your mind off your pain...if only for a minute helps=)

     
    Old 01-14-2014, 11:09 AM   #15
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    Re: Ho-Ho-Hope?

    Well, it's me again...Today's a pretty rough day for me, as my both back and belly are hurting. It's always a vicious cycle, as most of you know...take pain meds on top off severe and chronic constipation...deal with even more severe belly problems. Oh...I know, treat it as best we can and "move" on.

    In the meantime...I thought I'd continue my response regarding loneliness and family issues=) Back to my Dr. niece who didn't know how to boil eggs...She filled a huge pot with water and placed in ton the stove top. I handed her the carton of eggs, as she stood and waited for the water to boil. Although flabbergasted, I didn't want to embarrass her, so I gently explained that the eggs must go into cold water and brought to a boil. The potatoes that she and her husband "washed" would have created a video worthy of *******=)

    Obviously, her idea of "killing it" in the kitchen and mine are vastly different. It's funny, actually...as in bizarre...how my entire family wants to enjoy the traditional (mom's cooking) Thanksgiving foods, but they have NO CLUE what it takes to make that happen. I ALWAYS helped my mom shop, prepare, serve and clean afterwards for meals for upwards of 16 people when we gathered at her house. I learned to cook like her...no one else did...so I'm the only one who can "duplicate" her food. I CAN DO IT...and have done it since she's not been able to. It's just TOO MUCH on me and my husband to not only purchase everything and prepare it, but also to host it all in our home.

    Call me a dreamer, but I don't see why we sisters can't work together to make holidays happen. My kitchen is large as we renovated our house when we moved back to accommodate 3 ovens and 2 cooktops. I knew my mom's age and health were deteriorating and the time would come for me to take the "torch". SK...I've tried asking for help, only to be rejected or horrified at what they "bring" for an attempted "buffet" supper. I resorted to asking each family to contribute to the grocery costs, which they did for 2 years. The truth is...They thought they didn't get their money's worth LOL, but not=(

    This year, NO ONE made any effort to come together for Thanksgiving or for Christmas. As earlier stated, I tried to bring us together between those 2 dates. My husband and I hosted a supper for everybody...then open house to everyone for desserts and coffee. I know, it's my problem to deal with, but I don't know how. I'm sad ALWAYS during the holidays. I KNOW that if we don't host, my husband and I will be completely alone. I KNOW that if we don't bring mom from the nursing home (again, they don't visit her for the holidays, either now that she's in a facility and can't cook and provide for them) to my house, she will spend the holidays in abandonment as well. It makes me sad. It makes me angry and disgusted with my siblings. It doesn't have to be this way.

    It has always been, though, so I shouldn't expect it to change. I've ordered Christmas presents for my nieces and nephews as I lay in my hospital bed for 9 days receiving IV for dehydration. I've left my IV/Hospital bed many times to go to the grocery for my mom (post discharge) pre-holidays because no one else would. No, I'm not Superwoman, nor do I claim to be. I've helped my mom prepare meals for everyone, running back and forth between vomiting/dry heaving from pain meds for my back, neck and pelvic issues. SOMEBODY had to do it.

    It's not just the holidays. That's why I'm posting. The holidays shine the light on dysfunction in a family because the rest of the year is avoidance. Now our holidays are also avoidance. I can't force my siblings to have a relationship with me. As for asking for them to join me for coffee or lunch...I have many times just said to them how lonely I am. I need help with mom, but I don't get that either. I ask for moral support...to get together even monthly to do "girl things"...no worries...no issues. They won't do it. They just don't like me, I guess. Both their husbands are controlling masters that track their every move. They tell them how they can wear their hair. They don't want them around me because my sisters might actually have an independent thought (through my influence).

    My friends are pretty much "old" folks (82-94) They are my aunt and her friends that I drive to appointments and goof off with. I love them to death, but that's just it...They're dying=( Those that remain are lively and active and a joy to be with. However, their needs exceed my ability to perform. Every time I walk through a door, they have a list of things for me to look at/fix/take care of. That, too, has become overwhelming, because my mobility (joint issues) limits my "climbing", "lifting", "moving heavy things", tending to their flower beds, etc. I get "farmed out" as the "young one" @ 52 because they KNOW I'll get it done...whatever the task. I can't say no. I won't say "I can't" on anything to anybody.

    I've got to learn to say "no" in 2014...yea, right. I've got to take better care of MYSELF...prefer to focus on others...things I can fix...because I can't "fix" my pain and suffering on a daily basis. I can only medicate and try to distract myself with specs, bids and deadlines with work...plus oversee my mom's care and needs...plus take care of our home and large property, pets...then be handymam for my senior peeps=) That doesn't include the vast amount of work I do with church and my mom's facility events.

    I've rambled again...SORRY...Just thinking out loud I guess. I can't focus on my health problems or I'd go nuts. It's just too much. I have to keep going in order for everyone around me to keep going. I'm sick and tired of being sick and tired. Do y'all ever feel this way? If so, please share with me, okay?

     
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