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>