Friday, March 23, 2007

I'm Gonna Ramble On...

Thank you, for all the support and kind words and advice for Hubby.

I just need to ramble a bit... It is so hard.

You see, just because he isn't well, doesn't mean that I suddenly am well.

So, we have been just snapping at each other and I hate that.  He has been a little 'snappish' with the kids too, and it is hard.  They are used to seeing me 'not well', but not Daddy, and now both of us are not so hot.  

My poor babies.

My friend Tracey, who has been absent from J-Land for a long time, wrote a journal entry this week that I almost missed!

Here is the link to her journal for those of you who remember her, or would like to check her out:   in one*hip*mama's head 

I want to quote something from her most recent journal entry.

<<<Do you ever feel that, even though we have a chronic illness, others think we can control our daily lives?  As though we can wake in the morning (or afternoon) and say, "I'm not going to be affected by lupus today">>>

Yes, I really do.  I think my Hubby in his sick state, which he doesn't like, and isn't used to at all, has assumed that I can just 'step up to the plate' for him, as he always does for me.

Unfortunately, I can't.  I still feel like sh*t, and I will feel the same tomorrow. 

I will have a hard time going to sleep.  I will have more numbness and pain and spasms tonight and tomorrow.   My mouth sores, are not going to just disappear.  My joints are not going to stop being swollen and achey.  My fatigue is not going to vanish and leave me full of energy.  My cognitive function is not going to switch from pea soup to clear broth, because I want it to do so. 

I will still be struggling. 

Another J-Lander who put it well in her journal is Carol, of The Spine Line Too , in her entry called 'The Pain Letter', which I will copy an excerpt from for you now.

<<<I look normal. Don't let my outward appearance fool you.  I am in pain. I am not the same person I was a year ago, or two years ago, or 4 depending on when it was you last saw me. I look healthy, I am not.

My condition changes from day to day, sometimes every hour to hour. Today I might be able to walk with you a few miles, tomorrow I may not be able to get off the couch. A week ago I almost felt human, next week I may feel like something less than what the cat dragged in. I may WANT to do all the same things I use to do, to work out, take long walks, socialize, keep some balance of household order, but I may not be capable of it.

If I say "MAYBE BE LATER"  please understand and accept this for what it is, which is not an excuse, it is a reason. I don't enjoy my new limitations; I hate it, I might even be physically able to do today what you wish for me to do, but if I know  without a shadow of a doubt that pleasing you will mean for me later a incredible amount of pain, I MUST say NO , I am not lazy, I am HURT.

I absolutely do not want pity, This is no reason to feel sorry for me==life is not perfect and life happens to all of us. This is the hand that I have been dealt. And I intend to play it out,I don't blame the world  for what I suffer. I don't rally against God, this is no one's fault, not even my own.

I do not crave attention, I did not decide one day that I was tired of living  like a normal person, and that the means to a life of never again having to work, having my whims catered to, having  friends and family treat me  specially, involved creating symptoms no one could see under a microscope. I loved my life the way it was, I was never depressed, and I had plans, this isn't a cry for your attention, IT JUST IS.

I don't feel sorry for myself. Why should I? Things don't always work out the way you want them to...this is one of those times. I can live with who I am now. I may not enjoy each day  as much as I use to. but I still live for each day and embrace  whatever I can get out of life. PAIN is my companion...but pain is NOT me.

 Carol has chronic back pain, but you can see that her words work well for any and all of us coping with chronic illnesses.

I am so frustrated.  I want to pick up the slack.  I want to be able to be Wonder Mom, and be so fantastic that the kids don't even notice that they are down to two 'half parents'.

I wanted to be able to go to lunch today with Hubby and to the doctor's office with him, but my body didn't.  I want to be Wonder Wife, too. 

I have given up trying to be Wonder Daughter.  Thank God I HAVE Wonder Parents.

Frustrated.  I am very, very frustrated.  <sigh> 

Who knows... maybe tomorrow I will wake up and have a good day.  I think it will stop raining, so that should help.

I do feel better after the rambling.  <g>

be well,


nightmaremom said...

aawww I'm so sorry ... I wish I had some pixie dust to make it all better.

gazker said...

I just want to hug you and hug you again and again...There is no way I can cure you, or take away the pain, but if I could I would. Your ARE an amazing woman, you don't know it, but YOU ARE, that WONDER Mum. You are an inspiration to so many in J land and beyond.
Gaz xxx

toonguykc said...

Damn.  I SO wish you had fewer burdens in your life.  Men are stupid creatures -- and I'm one.  How do you put up with us???


lindaggeorge said...

I can imagine how it is, although Mike adores me and will do anything for me (well, almost!!). He also has a very selfish Male streak, he only has about four hours tolerance of my being ill and then it's as if he is bored with it and wants me to go back to being Wonder Woman, which I am most of the time!!! lol.

When I was in bed for a week with the flu, he cooked my meals and did everything that needed doing but with a lot of sighs and he treated me as if I was a stranger, no real conversation, just the basic formalities, rather as if he was an indifferent waiter in a restaurant. It really p****d me off.

Why ARE they like that?

Have a good day.

Linda xx.

eml625 said...

Men are different when sick. We have all seen it.
Prayers for both of you two.
big hugs,

emabecmar said...

I wish I could make things better. I suffer from chronic pain too in back and in legs and now in shoulder since cancer surgery in neck. doctor said in a year it would feel better, well it's been 2 and a half years now and it feels worse. Will add you to my prayer list. (((((hugs)))))

ksgal3133 said...

Many hugs and prayers to you!


demandnlilchit said...

I am beginning to understand completely not that I didn't before but now I know first hand that even though my mind wants to work, there are days that my body just can't. the end of somedays, it's a wonder I can get myself to bed by myself and those are the night I pray I don't have to make a midnight run to the potty! lol


tenyearnap said...

What a difficult place to be in...your frustration really comes through here. You are taking care of your family to the best of your ability. I hope you get that good, sunny day. ((((((Dawn))))))--Cin

cacklinrosie101 said...

Dawn, like I've said, since you are so upbeat, I, myself, tend to forget just all you have to go through each day.  For some reason, Moms are expected to be Wonder Women and to continue against all odds to accomplish so many tasks.  It doesn't happen even for those of us without chronic pain and illnesses.  LOL..I hate to say it but men are babies when it comes to health.  That's why God chose not to have them give birth.  You are so blessed to have wonder parents.  My mom is pushing 88 and puts me to shame.  I will pray for you and hubby.  HUGS & LOVE Chris

randlprysock said...

Hang in there.  As the day progresses and you get to moving around maybe you will feel a little better.  Sometimes that works for me even when I'm not feeling so good.  Today is a similar day for me.  I'm not struggling with any of the things you mention here... other than just getting old (LOL) but I am not having the greatest of mornings on this end either.  Yes, it's 1pm and still feels like I am only about 1/2 awake.  LOL.  I think you are handling your situation so well.  God Bless,
Lisa : )

acoward15 said...

The best way to snap at kids is to get a crocodile.

klconard1 said...

((((((((((Dawn))))))))))))  I am praying for you dearheart and your DH and the children.  I know this is a tough situation to be in.  I have been finding out what it's like to have both of us competing for 'who feels the worst' for the past nearly two years.  It is not a fun contest to be in.  I've discovered that even though I cannot step up and do all that my DH can no longer do --- I can support and encourage him through prayers and by allowing the Lord to make some attitude shifts in my heart.  I need to remember all of the time that my DH is not used to having any physical disability that goes on and on and on.  He is used to feeling sick or bad for awhile and then having a dx, a treatment and feeling OK again.  His new physical problems and the lack of real answers and solutions have put him back where I was in the pre-dx days.
loving you

coelha said...

(((Dawn)))  I really feel your frustration...  This must be so hard.  Keep positive, and know you have a lot people wishing well.  We all can't be everything for everybody.  Take care--I hope things get better for you and hubby very soon!  Julie

sdoscher458 said...

Dawn hope you have some good days soon. My hubby is the same way, avoids doctors like the plague, yet turns into a huge baby whenever anything goes wrong with him.  Hope your hubby's stomach calms down too...Sandi

pharmolo said...

Hope the good day comes - tomorrow :-D)

gehi6 said...

I hope that your husband's problem is not too serious.  You can work with pancreatistis.  My last companion had it and would get bouts from time to time.  A lot of pain.  I read down through your journal today and learned you will bhe hostess to CarnivAOL.  That's nice.  I am going to volunteer after I have practiced making links from one word.  That is essential and I haven't done it yet.  I have chronic fatigue syndrome and the worst was feeling so habbled for such a long time.  Now my limitations are just the normal limiations of most people my age.  So they aren't as noticeable as they used to be, but I learned that I had to stay in my my limitation regardless or worse would follow.  You cannot exerecise out of this as some seemed to think I could  I  had to take months to recover what strength was 'normal' for me.  I am glad you called off that little dog. I told you I would be back!  Gerry

tlgf1968 said...

to my "wonderfriend" :)
         may your sunday come-n-go with fewer aches&pains (literally and figuratively).  
thanks for the nod!
         (((gentle hugs)))

rdautumnsage said...

(((((((Hugs)))))))))) I'm so sorry your down today hon!! If I lived closer I would be there in a heartbeat to help you out till Hubby was back up and around. Men do tend to feel as though they hurt way more than a woman does. The last time I had a lung infection , Doc got sick too. To make a long story short, he slept, moaned and groaned and was a complete child. Me? I waited on him, gave him medicine, took care of the animals and took care of myself. The irony was after a few days he felt better and was up and about and wanted to know how come I was still sick LOL! Men gotta love to hate them at times. Kids are resilient they tend to understand alot more than we realize. I think your amazing with your kids and if I didn't know about the Lupus and various other things going on with you, I would still think so. You have a world of love and patience. (Hugs) Indigo

hugsdoodlewacky said...

((((((((((((((((((((((((((((((((((((((((HUGSTOYOU))))))))))))))))))))))I am sorry you have to go through so much pain.I hate it to,I have Arthitis,I deal with it everyday.I hope and pray better days come to you.Have a blessed day.

sunnyside46 said...

you are a courageous woman