Re: Family Pain Management - TO SUDSEY
From: JoCee27 (anonymous@obgyn.net)
Tue Feb 28 20:41:40 2006
SUDSEY
You sound like you are someone that has been dealing with endo quite a
long time and you know how to manage your life around it. My family and
I are new to all of this so we are learning as we go. My husband has
been disabled for 12 years and to look at him--like people look at us
with endo--that there is nothing wrong with him. He is physically in
good shape but he has a lot of aches, pains, and frequent bathroom
trips. He has good days and bad days just like I do, although his good
days out number mine. I've been the one in our family to keep going no
matter what. The very day I came home from the hospital after having a
c-section I was out in the yard cleaning up trash where the neighbor's
dog had gotten lose and had himself a good ol' time in our garbage cans.
The flu kept me home from work but it never kept me from making dinner,
doing laundry, cleaning house, or chasing the kids.
As I said before, my husband thinks my sick days are vacation days and
that I'm not here to lie down and relax because something is wrong with
me; he thinks I'm here because I just wanted a day off. I don't think
he realizes the severity of what I am going through. When I bring up
how badly I hurt and how it feels he looks at me but I don't think he
hears me. When I tell him I need him to lie down with me and just hold
me I think he sees my lips moving he just doesn't understand english. I
am very alone in all of this as my family is just not there for me at
all; not that they ever were. I expected my husband to pitch right in
with the soothing, comforting, and understanding that only a spouse can
give when things like this happen. His family has been really
supportive of me. His Aunts, his mother, his father, have all been
great in helping me out and standing by me; they aren't too proud of
what he's doing though.
The other day I was hurting really badly and I sent him to pick up my
pain medication; he was gone 12 hours! I found him at almost 2 in the
morning at his friend's house which is something he's never done before;
I mean to stay gone 4 or 5 hours is expected when he says he's going to
be gone an hour but to stay gone that long is out of the ordinary. The
friend he was with tried to convince me that they had been talking all
night about me and how much my husband cared for me; I felt like puking.
My mother-in-law and I had called hospitals; jailhouses; everyone we
both could think of and every place that he could possibly be to end up
on a cold dead end. But his excuse was that he was so disturbed by what
was going on with me that he had to talk to someone about it. I
thought, "If you really care about me at all you'd be at home helping me
with our children when you know I can't get around too well," or "If you
wanted to air out your concerns you could've done that with me, geez,
I'm the one going through the hell and it would be nice to hear that you
recognize it!"
I told him that he made me feel like if I wanted to know how he felt
about me or what he was thinking that I had to ask his friends because
telling me is never the option. Sometimes I get the feeling that he's
not there talking about me at all, but rather running off on his
responsibility to me to stand by me and help me through this. And when
I think that, I think of how unfair it is considering that I've stood by
him and his illness for 12 years. I've asked him for an inch of the
thousands of feet I've given him and I'm damned for it.
At Tue, 28 Feb 2006, Sudsey wrote:
>
>I can't stop laughing at that vision with the car. Having the 5 boys
>and being in pain I had more then my fair share of moments of wanting to
>velcro them to the ceiling to keep them from trouble while I made dents
>in my couch over pain. Do I ever get the lack of the helping hand from
>those I have so willingly helped in the past too. I tried to keep
>special things for the kids in those moments to keep them occupied, a
>new movie to watch, a little project age wise I knew they'd love and
>only when I felt my worst did they get them. Kids love to make art crud
>so it became my own advantage. There's always a reason to make cards.
>In the good times I also got smart to surf the net for new ideas and
>printable coloring pages. I made an art kit for those not so wonderful
>times and got it out.
>I've been lucky to send Kids with my husband so while he'd take the two
>most prone to trouble and leave me with those less prone to trouble. My
>bad times being the stay at home mom in summer when hubby is at work and
>I get the joy of the full day.
>I made homemade play doh that worked for a good hours worth of behaved
>children. I invested in simple things like popsicle sticks and glue and
>put newpaper down on the kitchen table and let their immaginations soar
>and would say make something to suprise me with. I got those foam
>shapes and they would make pictures with them. I made erasable coloring
>sheets by laminating plain paper which with crayons wipes off they loved
>it. The busy work allowed me time. Simple things amuse kids take a
>laundry basket with rolled up clean socks and shoot for points. the
>busier they tend to be the less prone to the troubles they are. As bad
>as we can feel they do eventualy catch on. My older two would always
>notice I didn't feel well and would work with me to help with the
>younger 3. I had my days I would beg and bribe them if they were extra
>good I'd allow special times like staying up an extra 1/2 hour or a
>special favorite snack or let them pick what's for dinner. Depending on
>age of course.
>Sounds like Hubbys isn't fully aware of the exact extend of your
>situation which might need a little talking over. I found my husband
>responded best to similar pain. Imagine if you will getting hit below
>the belt love and the pain lasting for days.. They get that type of
>pain it's one they never forget. Mine had kidney stones and I was not
>as sympathetic as I could have been b/c I said o come on suck it up
>right it's how you expect of me with Endo pain and past that he was so
>compasionate when I was in pain b/c he knew what real pain was after
>that episode.
>I also found with my husband I had to give direction to him as per what
>I needed b/c he wasn't gonna come up with it on his own. O she's in
>pain didn't exactly make his brain click to she needs extra help or a
>break from the kids. I had to be vocal which most of the time I found I
>wasn't enough. It hurts doesn't say I need help to men all the time. I
>found it all so interesting how he could find reason to shop when I felt
>bad. I think he figured I wanted to be left alone when I didn't feel
>well and he made sure to stay clear of me which to me was like his not
>even recognizing my pain. He thought he was being helpful to busy
>himself and pick up the slack but to me it was almost insulting like I
>should be doing it and it's putting him out but that was my own mental
>trip and not exactly truth either he was trying to please me but didn't
>understand that I could have cared less if he was doing laundry or
>chores he'd neglected for years. The laundry would be there when I felt
>myself again and I'd grown accustome to that routine of overload when I
>came back from a down spell.
>I thought for many years he got it all but he didn't and it's what
>caused more friction between us. For me PMS made my thinking well
>distorted and my emotions all over the place so I wasn't always in that
>rational thinking mode either.
>I as a parent didn't exactly want to put the kids on the back burner
>over Endo and I wasn't about to make the Tv my babysitter either but I
>knew in the times I had pain as opposed to the times I felt like me I
>more then made up for quality time with them so I had to let that go and
>say it's not gonna ruin them to sit and watch a 1 hour disney movie so I
>can take pain meds and know they aren't into trouble and I just made it
>more of a cuddle time on the couch with them..We'd do livingroom picnic
>lunch on those days so it was like this o eating in the livingroom is a
>no no so this must be special. Take and old sheet and tell them it's
>how other cultures eat make some lesson out of it as well as fun. I'd
>pretend the couch was our boat and we didn't want to get off it b/c the
>gators would get us or the sharks.. Keeps a wee one planted and you'd
>be suprised the tales they tell about the other boats they imagine to be
>passing by or the size of the gator they just imagined..Alot of times
>they would fall asleep with me on the couches if I planned it all right.
>
>another suggestion is a neighborhood older child to help, most older
>girls love little ones and are happy to help and if you have to pay they
>come cheaper then any adult. Even if it's only for one hour of time.
>
>My neighbors Granddaughter often came over to help me with the boys she
>was my eyes so if I took meds and fell asleep she was there. She was a
>sweety b/c I wanted to pay her and she'd say no it's ok I like playing
>with the kids. I'd treat her with little gifts I picked up at the
>dollar store.
>
>--
>Sudsey
>
>At Mon, 27 Feb 2006, JoCee wrote:
>>
>>How are most of you dealing with your kids when your endo flares up?
>>Knowing how my pain medication knocks me out or makes me loopy I try not
>>to take anything while I am with my kids and if I do it's half of the
>>pill. My husband acts like my being home is a vacation day instead of a
>>sick day. I end up here alone watching the kids when my reasons for
>>being home is to rest and get through the flare up; but he acts like my
>>being here is a sign for him to hit the pavement.
>>
>>My kids seem to take advantage of the fact that mom doesn't feel well
>>and that mom can't get down the hall fast enough or move about the house
>>keeping an accurate check on things. If I am confined to my bed because
>>I am hurting, I can feel the house rocking, I can hear them fighting, I
>>can hear them arguing, and my little one constantly rummages in things
>>she shouldn't.
>>
>>When my husband returns 4 or 5 hours later rather than what should've
>>been a 30 minute trip to the store, he looks at me and says, "What's
>>wrong with you? Why do you act like you're mad?" Those are the moments
>>in our sweet marriage that I'd like to run him over with the car and
>>laugh like some psychotic nut and back up and do it again and say, "I'm
>>sorry... Is there something wrong, honey? You sound a little upset. I'm
>>sorry... Did you say something, honey?"
>>
>>And asking someone to watch my kids because I am hurting is a joke. I
>>always hear, "Where is your husband at?" or "Where is their father?". To
>>get someone to watch my kids for me for a couple of hours at their house
>>or even just come over and sit here with them so I can take something
>>for pain I'd have to pay them to do it and to bring up how many times
>>I've helped them out when they've had the flu or some other problem is
>>not even worth mentioning.
>>
>>--
>>JoCee
>>
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