Frustrated...caution whine ahead

Discussion in 'The Watercooler' started by timer lady, Jul 3, 2008.

  1. timer lady

    timer lady Queen of Hearts

    It's a year ago on the first of July that I went to the hospital for the first time deathly ill. At first the thought was Guillian Barre' as I was paralyzed & struggled to breathe, then it was PMR, I believe, we moved onto vaculitis & then Susac's. You all know the story. Sorry to be repetitive.

    I've endured the prednisone treatment because of the fear of inflammation due to my high sed rate. (It's still high but much closer to normal.) But the treatment is killing me causing Cushing's. Now we are decreasing the prednisone with the hopes of discontinuing it by August (due back at Mayo Clinic then)

    Methotextrate has been added in hopes that as the decrease in prednisone a flare won't occur.

    Now I'm sleeping 16-18 hours out of every day. I'm weak. No one is talking recovery - it's maintenance now.

    I want more - I want to start physical therapy. I want to sleep less (my body is demanding it though) & build up my physical strength. I'm missing out on so much - have missed so much.

    And I'm trying to remain positive but it's getting more & more difficult. I've noticed that I'm (as most mom's are) the motivator around here. In the last few months, things have really gone downhill in my home.

    Dinner is not being made unless I'm awake & strong enough to cook. Laundry isn't being done unless I'm awake & can supervise it. Cleaning, in general isn't happening though I know both husband & kt know how to dust & vacuum. My home should be condemned.

    husband continues to work, take kt to therapist appts & visit wm. That's it. He keeps telling me that it's too much. He's stressed (& I know he is).

    I reply that it's no more - even less than I did when I worked & handled all the appts for both of the tweedles, the staff interviews & hiring, the cleaning & laundry (with some help), the staffings & all the phone calls. That along with his drinking, then hospitalization & rehab.
    And I handled it well!

    husband is a man & is whining! Tells me he wants to run away. Not a chance in he!!. If anyone runs, it's me.

    Now I can't remember to take kt for blood draws or call wm. I'm foggy & confused most days. That's why I'm not on the board much or if I'm here not replying to many threads. Too confused to contribute.

    I'm sorry - what brought this on was a trip to the ER the other night & an overnight stay at the hospital. There was fear of renal failure as I wasn't able to urinate. Now there's the added fear of kidney damage & diabetes along with everything else. It's being watched closely.

    I'm tired.......I'm normally a strong upbeat person. I feel battered this morning. My life has changed so drastically in the past year.

    Thanks for the shoulder - just needed to get that out of my system.

  2. Abbey

    Abbey Spork Queen


    I really don't have any advice as I don't know anything about those conditions, but it sounds like you need better medical advice. I don't know.

    I know what it feels like to want to sleep 18 hours a day, but mine is from depression. It's not physical. least you have us!! That's a reason to get up.

  3. Hound dog

    Hound dog Nana's are Beautiful



    I wonder if you'll feel alot less groggy and sleepy once you're finally off the prednisone? That stuff knocks me out. Period. And I don't get used to it.

    Did doctor check your B12 / B6 / and Folic Acid levels while you were in hospital?? Believe me if those get low it has a total wipe out effect both on your brain and body. The kidney issues makes me ask.

    A long term illness takes it's toll on everyone, as well as the patient. I'm sorry husband isn't picking up the slack. Mine didn't either. Still doesn't. If mine does half the dishes (without washing a single counter or stove) I'm expected to sing his praises for a month. lol

    You're in my prayers, as always. And Abbey has a point about the depression. You might want to think about it.

  4. susiestar

    susiestar Roll With It


    It was about a year ago my fibro flare, the psoriasis and the 2nd neck disk blowout all seemed to happen. I totally know what you are feeling. I don't function much, if at all. I am doing my best to keep on top of J's schooling (couldn't put her in school because our middle school refused to give her an IEP even with the OHI that clearly made her eligible AND they refused to stop the sexual harrassment in the halls. She went through enough abuse with Wiz, no way she could cope with a whole year of that at school too.), but very little else gets done, and no progress is happening on my health front.

    I never functioned at the level you did, so I can't say I feel your pain and frustration, but I do sympathize.

    As for the whining about not being able to keep up with what we, as moms and women did daily, well, it stinks. The fact that they even can say that to us makes my eyes pop out at their nerve, and wonder how they can find their way home at the end of the day.

    I wish I could run away many days. I know you do too.

    If it means anything, I do sympathize.


  5. Shari

    Shari IsItFridayYet?

    Girlfriend, if anyone should have a ticket to whine, you should. If you were playing poker with the hand you've been dealt, well, I'd tell ya to cut your losses and fold. Thank goodness this isn't poker.

    Living your life has to be exhausting. I know you despise the saint comments, but there is always a sense of awe when you do post, and your attitude and demeanor are always so positive. You may not be a saint, but you are definitely a role model for those trying to learn to roll with the punches (aka me).

    Hugs, Linda, and sending prayers for strength and peace.
  6. dreamer

    dreamer New Member

    Linda, my heart breaks for you, and yes, I can totally relate. The condition of my house disgusts me, depresses me, and makes me angry beyond belief. It has been a fewyears since I permitted anyone except my kids friends to see it. Where I once worked in very physically demanding jobs up to 20 hours a day 7 days a week, I then slept 22 hours many many days and my awake time was often spent in a fog, or simply moaning in pain. Yes, I have the pred induced Cushings and the pred induced diabetes. It was a trade off, I accepted those in exchange for more awake time, more ability to function. I still have moments when I want to run thru the house screaming at my husband and kids becuz they do nothing, not one dish, not one article of laundry, do not feed our pets, nothing.

    HOnestly, for me, I think the mtx increased my sleepiness and fogginess. I reduced that a little, added more pred, and added my HUmira. Just like it can take somany constant medication changes for our difficult children, these illnesses also can require constant adjustments, sometimes becuz something does not work, sometimes due to adverse reactions, sometimes our body changes, sometimes we get cumulative effects, or we become immune.
    Bottom line is without these adverse effects I probably would already be gone from Earth. If I were not gone from Earth, I would absolutely be far far moer ill and miserable and less functional than I am now, even on my worst day. My family can take me or leave me how I am right now. They can accept my level of functioning or they can head out the door. If they are not part of the solution, they are part of the problem. I still do what I can for them, still work to help them reach their life goals, and I still do it all without any help from family, friends, neighbors, agencies, becuz our help agencies have slowly disintegrated due to lack of funds over the years.
    The miracle is in that my difficult child is still alive at all.....she has not husband has not yet succumbed to his long list of diagnosis' son is appearing quite normal and far more functional than some of his peers these days....
    Jon and Kate plus 8 has a thing in their intro- this is OUR life. thats how I feel. This is our life. this is the cards we were dealt. I cannot make my illness go away. I cannot make my husband illness magically go away. I cannot wave a wand and make my difficult child be a non difficult child. What I can do is simply what I can do. SO I simply do do what I can do. And I do my best to honor the gifts we do have. SOme days I simply honor the fact that we ARE alive. If someone else does not like what did not get made for supper, fine. let them do something about it. I did not choose to have this illness. I did not choose my husband to have his diagnosis'es. I did not choose my childrens health issues. This is just simply, the luck of the draw. This is how it is, this is how it turned out. I still consider myself lucky to have my children, I feel blessed, it was not an easy road for me to have any kids. I am grateful for my home, I worked my fingers to the bone, quite literally, to get it and keep it. But at the end of the day, I always think of my best friend, died so young, in a very gruesome long drawn out and excrustiating painful way, leaving her husband and children behind here...... and I am grateful I am here. Irregardless of what I can still do and less mindful of those things I can no longer do.
    LOL, hardest for me was that I had been SO hypomanic, SO physical, and ironically a care provider myself, doing all these things for other people, not just at work for pay but also becuz I had no money, so my way to show peope I cared was to provide care for them whenever they needed it. My entire life changed so dramatically.
    I began useing my mobility scooter before I totally lost ability to walk- becuz it helped me pace myself better, enabled me to continue to keep up with being more involved in my kids activities than I would have been able to otherwise. I had to reset priorities and think them over very carefully to make sure to be able to do those things that I found MOST vital. I know many people look at our life here, and my ideas and wonder how I came to choose the priorities the way I did.....but it was my experiences in Life, my relationships with others, my on job experience in Hospice, my goals for what I wanted for my children that helped me come to my decisions. If someone is not pleased with the condition of my housekeeping, too bad. Usually I use my energy to spend quality HAPPY time with my children. If I choose to cook with my kids, I am not necessarily thinking of the goal of teaching them to cook, becuz they can always learn that from foodnetwork or a cookbook, what my goal is is to spend time makeing memories with my kids. when we do cook, often it is something we decide to make to take and share with someone else, like maybe for a neighbor who we think could use a happy thought coming in form of some special cookies, and I want my kids to think about how they can be kind to others.

    Don't get me wrong, I do now again do laundry every day, and I do the dishes as I go thruout the day......but for a long time, I could not do so and I would have my good days and use them up catching up- unburying us from mountains of laundry and every dish in the entire house dirty.
    And sadly, our home is still buried under from my many years of serious illness. and yes I HATE it. BUT I cannot do everything. I am after all, merely a simple ordniary human being.
    Be gentle to yourself, be kind to yourself, you are also merely an ordinary humanbeing. You can only do what you can do. But, also keep in mind, everyone else also has their personal limits. They too can only do what they can do. and their priorities might be different than yours, and they might be focusing on what they consider important to them.
    Chronic illness is very very hard on familys, couples, relationships and a chronic illness impacts EVERYONE. Just as our difficult children illness affects us, our illness also affects others. Learning to cope with my difficult children diagnosis'es really hit home for me once I realized and faced just how my husband and kids havd to learn to cope with MY chronic illness. My difficult children diagnosis'es caused a lot of hardship for us as a family, and yes, some call some of it abuse.......but my own illness has also now caused grave hardship in our family, and some could call some of it neglect. It has helped me learn better how we pull together, how we learn to accept the differences. I can only do what I can do. And my family accepts it, even if they do not make up for what I cannot do.
    It takes time to get to this is not easy, it is not fun. It takes a thick skin. THat grows slowly with time. I simply no longer have the energy to care somuch what others think, and I am learning to simply adjust myself to accept how things are. BUT I have been living this way now with this illness for a number of years......and yes the emotional and psychological impact was prolly much harder to deal with than the actual physical difficulties. I truly felt my body let me down huge. I am grateful it permitted me to enjoy good health and strength for the years that it did let me.
  7. nvts

    nvts Active Member

    Linda, my heart hurts for you and I wish I could come and help you!

    I don't know if this helps, but you've proven to be such an inspiration to me. It's natural for you to feel down and out, and it's natural for husband to feel overwhelmed.

    It truly stinks when it feels like even "the big guy upstairs" is kicking you when you're down. But try and remember the poem "Footprints".

    It reads like this:

    Footprints in the Sand

    One night I dreamed I was walking along the beach with the Lord.

    Many scenes from my life flashed across the sky.
    In each scene I noticed footprints in the sand.
    Sometimes there were two sets of footprints,
    other times there were one set of footprints.

    This bothered me because I noticed
    that during the low periods of my life,
    when I was suffereing from
    anguish, sorrow or defeat,
    I could see only one set of footprints.

    So I said to the Lord,
    "You promised me Lord,
    that if I followed you,
    you would walk with me always.
    But I have noticed that during
    the most trying periods of my life
    there have only been one
    set of footprints in the sand.
    Why, when I needed you most,
    you have not been there for me?"

    The Lord replied,
    "The times when you have
    seen only one set of footprints in the sand,
    is when I carried you."

    By Mary Stevenson

    I know it's hard to throw it to faith (I don't know if you're even INTO religion - just trying to help!), but sometimes when I get totally fed up with life handing me lemons, I (in almost a defient way) hand it up to God and tell him "well, YOU"RE the one who's perfect, so YOU fix it!"

    And sometimes he just does.

    Love ya and hope you're feeling better soon!

  8. standswithcourage

    standswithcourage New Member

    Can you afford for someone to come in and clean your house for you? That is what I would do - it is not fair for you to still be responsible for EVERYTHING when you are the one that needs attention. Everyone should step up to the plate and help out. I also believe the predisone will wipe you out. Hang in there. At least you are getting somehelp.
  9. everywoman

    everywoman Active Member

    Linda, I'm so sorry that you continue to be frustrated by this mysterious illness. I wish I had answers. I wish I lived next door and I'd bring you soup and clean for you. But...I'm too far away to send anything but a hug and prayer that things get better soon.
  10. KTMom91

    KTMom91 Well-Known Member

    Linda...I really don't know what to say or how I can help. I would like to, though. Sending many gentle hugs. I hope this new medication combo works for you.
  11. TerryJ2

    TerryJ2 Well-Known Member

    Linda, first things first: {{hugs}}
    I am so glad Dreamer posted ... someone who's been there done that makes a diff.
    Like Everywoman, I would love to help out if I lived next door (first, strangle your husband, then, bring food!) ...
    I'm wondering if there are any food prep places in your area. You either go in or call in the types of meals you want, have them wrapped and frozen, and then delivered to your door. They are healthier than TV dinners by far.
    Are you a member of a church, where they have a committee to help out people with-illnesses, etc.? Your bio says you do watercolors ... you could do some small watercolors and give them to the people who help out with-meals, cleaning, lawn svc., transportating KT, etc.
    Can KT keep a calendar of her own appts. and remind you the day b4, and then a cpl hrs b4 she needs to go? I can't recall what she's doing this summer ... camp, school, just hanging out, but it seems like she should be able to keep track of a few appts. I'm not sure how she is on the phone with-nurses, etc. but you will surely find out!
    Just some thoughts.
    I'm a fixer person. I'm better at doing than sympathizing. Wish I could help ...
  12. Wiped Out

    Wiped Out Well-Known Member Staff Member

    You continue to be in my daily prayers. If I had a magic wand you would be the first person on my list that I would use it on. It has been a hard year for you. Your frustration is so understandable. I too wish I lived near you so I could do something to help. Sending healing prayers your way and gentle hugs.
  13. amazeofgrace

    amazeofgrace New Member

    oh sweetie, you can have both shoulders, one of my xanax and I will get out the good wine and chocolate too! <<<Gentle hugs and prayers>>>
  14. flutterbee

    flutterbee Guest


    I haven't read all of the other responses, but I'd thought I'd lend my shoulder and my experience.

    As far as the sleep, it could be a vitamin/mineral deficiency as Lisa suggested. It could be that the medications are causing some of it. It could also just be part of the disease. Cushing's causes overwhelming fatigue for one. I've found with whatever is going on with me that the fatigue seems to ebb and flow. I am always easily fatigued with physical or mental activity, but the sleeping enormous hours of the day seems to come and go. For a couple of months, I was sleeping 12-16 hours a day, sometimes more. I finally saw my doctor about seeing a sleep specialist and before we could schedule the appointment, it stopped. It was like someone flipped a switch and I went from 12-16 hours a day of sleep to 5-7. Within the last week, I'm back to sleeping a lot more again. I've slept most of the day today...I was up 5 1/2 hours total on Thursday.

    I know for me, the fatigue makes me feel significantly worse. The pain and weakness and cognitive disorder is one thing. But when the fatigue hits, I feel really ill all over. This is going to sound dramatic, but I feel like my body is shutting down. I know my kidney function tests and liver function tests, etc, all come back good, but it really feels like my body is slowly shutting down. I don't know how else to explain it. Intellectually, I know different, but it's how it feels.

    I understand how hard it is to try to come to terms with who are you know vs who you used to be. I struggle with that daily. And, as I posted on my b-day thread that you started for me, my mom was telling me today that she remembers me as a baby and a child and even a few years ago and she can't believe I'm the same person. Today, I had to have my son help me get out of the bed. When I woke up tonight, he was asleep and it took me almost 15 minutes to get out of bed. I'm angry at what has happened to my body and my mind. And I'm letting myself feel a bit sorry for myself, too. It's miserable and finding the positives all the time is sometimes hard and I think we need to honor our feelings from time to time.

    I'm sorry that husband is finding it difficult to do all that you used to do. We want things to go on as normal and it's frustrating to not see that happen. I've had to considerably change my expectations or I would just lose my mind. I had to realize that what I did before, I did because yes, it did need to be done, but I also found gratification in doing all that I making sure the house was always clean, dinner was made, etc. So, some of that was selfish needs and desires of my own and not everyone is going to share that. It is frustrating, though, because we really sacrificed for the needs and wants of others and these things are important to us and can't someone give just a little more? I understand.

    I wish I had more to offer. You always have my shoulder, my ear and my understanding.

  15. Marguerite

    Marguerite Active Member

    Linda, you know where I've been and that I really do understand. I remember when I had to hand over to husband, the transporting of the kids to school and back. I worked at the uni back when the kids were babies. I took 3 months off to have each one, then went back to work, a full-time employee plus breastfeeding mum. It wasn't easy, especially when I had three kids all in childcare, plus breastfeeding, plus working full-time. ABout that time I was also studying, finishing my uni degree (at another uni).

    Then four years later, the baton got handed to husband. By then HE was working at the same place I had been, and the kids were going to a school near the child care centre. For a while we car-pooled with another family, with me doing the driving for our family. It was often too much for me to make the hour's drive each way more than once a day, so I struggled for a while. Then husband finally took over and found it absolutely exhausting. He was most relieved when the kids graduated into high school closer to home, and more independent. I mean, I had done it for years when the kids were younger, plus had the constant to and fro through the work day (in every break) going over to breastfeed the baby. And I kept going.

    Trying to keep house here has also been very difficult. I try to be on deck, and in the past I've had the kids pitching in, but lately easy child 2/difficult child 2 has been "too sick" to help (unpredictably, too) and I struggle on, knowing that she could do more. She HAS been pushing herself to keep going during her working day, she just felt that when she comes home she should be able to rest after pushing herself all day.
    So husband would come home and if I were having a really bad day, he would have to take things from there.

    Even if I had food pre-cooked, just needing to be reheated, the usual evening routine would often go to pot if I wasn't there pushing it all along. An important part of the evening routine - feed difficult child 3. Because a cranky, hungry difficult child 3 is one who causes a lot of trouble with whoever isn't keeping things moving.

    I would struggle out of bed to make sure things kept happening as they should, and I would get shooed back to bed either by my older kids saying it was all under control, or husband saying the same thing. Then I would hear WWIII breaking out, and get up again to shut off the arguing. Every time I got up, people would shout at each other for causing trouble enough to have me investigating. If I gritted my teeth and stayed put - people WOULD get fed eventually, but sometimes it was hours late. And a couple of times, I didn't get fed at all.

    Linda, it stinks. It really does. Just hang on to this thought - it does get better.

    Even if you DON'T get any better (and you will - it won't stay like this) at least THEY will get better at either getting things done, or accepting how things are and not making a fuss about it. You will find kt will continue to get older and mature; husband will learn to manage a bit better (and hopefully stop whining so much) and you will learn to not fuss about the dust for now.

    I have a few things for you.

    First, Quentin Crisp on housekeeping. He used to say he never did any dusting, "because dust only accumulates on things you don't use."

    Second, something I saw just today and intend to investigate - the Nintendo DS has a new program. It is a mini-chef, it literally talks the user through up to 200 recipes. The ad on TV shows a bloke (reputation as a fairly typical, non-domesticated Aussie male) preparing a meal for a favourite female in his life (turns out to be his aunty). The DS is talking to him, telling him what to do. Speaker-activated. difficult child 3 saw the ad and thinks we should get one for difficult child 1, as a wedding present.
    Would one of these be useful for kt? Or husband? It would be fun to use as well as very useful, very helpful. It would take a lot of the chore out of cooking, as well as making it easier in general. And I really hope it will also greatly reduce the anxiety in the process, especially for my boys.

    When you are in the state you are currently, you need to be able to take things more easily. At least it is summer in your neck of the woods - there are things you can do more easily in summer. Salads, for example. Raw vegetables are healthier anyway. Plus they can be prepared well ahead of time. You, or kt - it doesn't matter. If you can talk her through some recipes, or have her sit with you and discuss meal planning, let her feel grown-up and responsible but knowing you're there as a backstop, it can help.

    I remember one time when I was talking easy child and difficult child 1 through cooking a rather complex curry. They had a recipe to follow, but when you haven't actually done it before, its easy to burn it at various stages. And burn it they did. They were feeling very guilty about that, but in fact because the recipe had a long, slow simmer stage, the burnt spices all slowly dissolved into the curry and gave it a wonderful flavour.

    And something really important to remember - any help kt gives you now, is all helping her learn the skills she will need when she is grown.

    Think back to fifty years ago. A woman's work was in the home. Girls were expected to cook, to sew, to clean - almost from infancy. I was expected to help my mother in every spare moment. I would get home from school (elementary school, too) to be expected to wash and peel a bucket of potatoes. There were ten of us in the family to be fed. I then had to help my mother with the other vegetables, get them ready to cook on the stove (which meant putting them, cut up, into water in a saucepan). Then we would turn on the saucepans as we started to cook the meat, so everything would all be ready at the same time.
    No microwave ovens. No way to reheat a meal once it went cold, other than to put it in the oven where it would dry out.

    So don't feel you are asking too much of kt or even husband. Especially with kt, you are doing for her what every mother fifty years ago did for their daughters (sons too, in my mother's case) - taught them how to be productive, capable, independent adults.

    I'll check out that Nintendo DS program with the recipes, and let you know if it would be good in your (our) situation.

  16. mrscatinthehat

    mrscatinthehat Seussical

    Many hugs going your way.

  17. dreamer

    dreamer New Member

    Last nite we (me and my kids) were at our fireworks display. I was talking with my kids about some people they know, some have serious mental illnesses in their parents and in the kids, some have substance abuse problems, and many of my kids friends parents have passed away. Becuz my easy child is so ill right now, and my difficult child still is so agaoraphobic, does not leave house without me, does not yet drive and my kids talk a LOT. SO we were discussing some of their friends and their friends familys lives.
    I was trying to help my difficult child and her discussion of her current "boyfriend" He does not drive, does not work at a job.....and I was talking to her saying that it is a good thing when you are pairing off to try to find someone who can complement you. She has many friends who do not drive, and one is very pregnant...far too young, and her mother is homeless. Sadly she is pregnant by someone who also does not drive, who also does not work, and whose parents are also homeless.
    Each person has different gifts, different talents, different things they bring to their partner, and to life. They also each have different priorities.
    While my husband has been far too ill to be any help to me with anything to do with our chores or errands etc at all for a very very long time- he does still remain my absolute very best friend. Truth is if he had been this ill when we met, I doubt I would have married him, but, he was not sick when we met. Or when we married. But he is still my best friend, and that is still very important for me. On his better days, he supports me mentally, even if he can do little else, and he thinks exactly like me 99% of the time, LOL, even when I am thinking in a non conformist way, LOL. He was a generous man, and I found that very attractive. BUT he really is useless to be any help. Not anymore.
    His gift to our family life is simply that he is just here. Thats all there is left of him now. SO when I became ill, it was a problem becuz he could not pick up what I could no longer do.
    Becuz difficult child has the types of issues she has, she did not step in very well to fill any part of my shoes. But she was a little younger than kt is now. My difficult child is very lazy. But over the years of my illness, she grew. She still is not very helpful, and she has so many fears and anxieties etc, but my difficult children gift to life is that she is very sympathetic, and empathetic and gentle. Out in the Big World this crushes her, andit drives her right back home. But at home it is those same qualities that make her the one who will brush my hair, help me dress, and simply sit with me if my pain flares bad. She gets so anxious she has difficulty cooking, and her sleep needs are very high, but it is still a gift to have her here, adding in her gifts to our family. Since my own illness and how it affected my body, it has helped me see her and how her sickness affects her brain. My illness robbed me of my ability to walk, use my hands feet arms and legs, hers robbed her of her ability to go out into the world and function very independantly.
    easy child brought her gifts when she was born. She is usually quite independant. She is The One who is gonna go far in her own life. My son is still a little young for me to be very sure, but, he seems to be the most practical, most assertive, man of few words but full of action.

    I used to be an extreme perfectionist. My home was immaculate to the Nth degree and I got teased about it always and sometimes ridiculed for it. But now that I cannot do everything I once did, now that I had such a long time where I had to depend on others, I had to learn that if I have to have someone else do things, it would be done according to their ways. Just like my difficult child had to learn that I would not always do things HER way if she herself could not do them, I also had to learn and accept the same. MY life was creating a perfect home for my kids, but, my kids have different ideas on what is perfect and what is important. They used their energies and efforts for THEIR personal goals, and our home got their time and effort that was left after they worked towards their personal goals. They did not care if our canned goods were alphabetized like I did. They did not care if their jeans had a center crease like I did. Maybe they never will care? They do not care if you can eat off our floor. LOL, they thought that was kinda silly, "Mom, who cares if we can eat off the floor, we DON'T eat off the floor, we use plates, so why does it nee dto be washed every day?" <shrug> um, cuz um, well thats just what *I* did.

    My difficult child struggles daily simply to be alive one more day in a world she finds harsh and scary and cold. I am always SO glad to simply SEE her breathing and alive that anything else is not so important. My easy child has big goals, and is working VERY hard towards them, towards her adult callings...yes, slowly she is learning dinner does not cook itself and homecooked is much nicer than Taco Bell every meal....and she is learning that even tho those of us here at home can be needy, we can also be supportive loveing and fun, so NOW she is slowly coming around a bend and finally really SEEING us more, in a better way. And our son? well, he is just our family favorite little dude. He is also our one with the most whit and humor. I would much rather spend time listening to him than watching him sweep the floor. SO I trade the floor getting swept for his antics. ANd his priority right now at this age is "what is the bottom line, here?" and he wants to hear NO adjectives, no adverbs, he wants the budget plan. No frills. I think if it were up to him to dust? he would toss anythng non vital for human survival. When he eats, it is simply for survival, when he bathes, it is economical, save the soap.....when he dresses, it is simply to cover his privates. How do I argue with that logic in these difficult economic times? LOL. How do I argue with this when I must budget my energy and actions? How do I argue when he sees his one sister cannot even leave the house? AT least HE can and HE does, it is HE who will run into the store if I get us there?

    When hard times hit, and a chronic illness IS a "hard time" then all you can really do is pool the family resources and learn to make do the best you can. BUT I have been trying to teach my ikids that when looking at prospective life partners, try to find one who can complement you and fill in, someone whose gifts to Life are different than yours. Hopefully then your home life will not have a lot of things that neither of you CAN do? Does that make sense?
    Soooo slowly, over my years being sick, I havve slowly accepted our new normal.
    Oh be sure, I cried screamed kicked and tantrumed along the way......sometimes a LOT.
    I felt sorry for myself a lot along the way. I had periods of extreme anger, feeling sorry for myself, etc. I often felt abandoned, scared, alone. I had far too many times where I did not get fed, times I even sat in my own waste for hours and hours.......and could not do a single thing about it. Blew my mind, hurt me incredibly.....but I did not marry nor give birth to ready made nurses or homeamkers. I had a lot to learn, and my husband and kids had a lot to learn.
    I know without a doubt either my illness will again break thru the current medications or problems will creep up that will require medication changes again. Yes I am scared to peices over that idea. Not one day goes by that I am not enormously grateful for the abilities I have regained. BUT truth is I could get hit by a car before then, anyway. LOL. a couple decades ago some of these medications were not there at all. Very probably then, *I* also would not be here now. SO I try hard to keep that in back of my mind, to help me keep some perspective about how things are here and now. I will trade just being here. ANd the same illness that did this to me, caused me 14 miscarriages, so when I look at my 3 kids, even in all their imperfect glory? They sure look perfect to me. Even if they won't get all the house chores done anywhere near as well as I did, even if they forget to bring me dinner when I am flareing. When I had them, my intent was to take care of THEM. Provide THEM a nice home. It even gets hard for me to think too often I look at them expecting them to take care of ME or provide us a nice home.
    BUT then, there is the other part, becuz so many of my kids friends parents have passed away, and had been gruesomely ill on the way, my kids know first hand up close to be grateful and glad to have parents and have a home.

    Linda? work with what you have, you can only do what you can do. Give the mtx time, while it is possible the mtx makes you more tired, it can also help with some of the other symptoms, but it takes time. Hang in thre, gentle hugs. Man this illness humbled me, taught me.....I was never one to understand how some people could not do all I did, the way I did so much. Now I am humbled, and now I do know. Each of us does have our own gifts and talents, different from everyone else, each of us has different priorities, different goals, different ways to do things. That is why no man is an island, and it is why it takes all kinds and why it takes a village to raise a child. It is becuz we all have different abilities and different levels of ability. Maybe house chores are just not in kts or dhs list of gifts.
  18. timer lady

    timer lady Queen of Hearts

    I'm sorry I've taken so long to reply....exhaustion has taken over again. I can get online with my PDA but typing the last couple of days has be3en extremely difficult.

    Dreamer, Marg & Heather, I appreciate yoru wisdom...I know you've been there done that & I take what you have to say with a great deal of respect.

    I appredciate the support & hugs from the rest of you. It's been a diffuclt weekend & I'm struggling to see today.

    Again, thank you.
  19. dreamer

    dreamer New Member

    sending healing thoughts and gentle hugs. SOmetimes thats all you can do- rest....there will be better days. I am sure kt and wms birthday was difficult, too.