Yes. That is what a picture is worth.
I guess I could stop typing.
I can't.
I had an epiphany while commenting in another journal this evening, giving comfort for someone else struggling with chronic illness.
My mom said to me today, and I quote,
'Maybe you need to look into some pills to take or something because your quality of life is awful. And, if this is how it is at 40, how will it be at 50?'
Mom made the mistake of speaking with Hammer within earshot who quickly rounded on Grandma as if she were a grizzly and he was loaded for bear!
The conversation was dropped after soothing Hammer, and reassuring him Grandma meant no harm, and was not being critical, just concerned. Mostly, concerned over my fatigue.
I have been chewing on it all day. I don't know what I looked like when my mom said it, but I felt like she threw a pot of cold water on me.
After six weeks of hell, I am feeling pretty good! My joints feel way better since my IV infusion, the mouth sores are under control and mostly gone, and the head cold is finally starting to leave!
I mean, damn, compared to some of my fellow Rheumatoid Arthritis and Lupus sufferers that is almost perfect!
Any one who struggles with diseases of the immune system, such as Rheumatoid Arthritis, Lupus, Multiple Sclerosis, Psoriatic Arthritis etc, can tell you that the fatigue is worse than the pain.
Here are some great articles for those interested to read:
This first one is a great overview and full of suggestions
Fatigue in Rheumatoid Arthritis
It is actually from the hospital in NYC that I go to for treatment.
This second article is a disturbing one. It is about a study that has found that in spite of all the great new meds to help slow progression of the disease, the fatigue and pain is still ever present in patients lives.
Daily Pain, Fatigue From Rheumatoid Arthritis
I could have told them that one. lol
Yes, the fatigue is still there. Yes, I slept in today, after getting the kids to school, and have all this week, between the ER, the head cold, and my dang 'friend' showing up after a 50 day hiatus, I don't think I am any more tired than most would be.
Okay, maybe, I am. But, I do have a chronic illness that unfortunately has this damn side effect.
Maybe, my life sucks more than I realize it does. I mean, this is my mom. She would know right?
I am truly at a loss. I honestly think I am more upset about her perception of my quality of life than I am upset at my actual life status.
What to do? Go back to pretending and sneaking naps again? Maybe. That is what I did in 2002 before I was diagnosed. I was so exhausted and so convinced that I was going insane or dying, I just slept all the time and hid it from everyone.
I hid the pain, the frustration, everything. Things were really bad then. Maybe they are now too? Maybe I need a different perspective, I am not sure.
Maybe, I am just upset because no one 'gets' it. Unless you have this disease...you just can't.
So, eventually, probably in a day or so she will read this entry and feel bad she upset me. Don't be, Mom. I can't verbalize what I am feeling. Better to just leave it be. And, I know you didn't mean to upset me, you were concerned. Watching your child be sick, no matter what the child's age has to suck, too.
Life is so hard and so complicated dealing with chronic disease.
I started a journal to share, in hopes that it would help other's out there. Family dynamics are so hard, without having illness in the mix.
I don't seem to be able to help myself with this one, but I have faith. I have hope. And, hope has wings...
Tomorrow, will be a better day.
be well,
Dawn
14 comments:
Did you know that The Scream was done on a piece of cardboard, and was stolen not so long ago? Can't remember when. Dummies.
All I can say is people say dumb things, and relatives are the worst because they think that no matter what, all will be forgiven. And it may be, but it won't be forgotten. "Thanks Mom, as if I am not terrified of what it's going to be like then!"
I don't think going back to PretendVille will help YOU, and it's surely not gonna help THEM, even though THEY might think so sometimes.
Hang in there Darlin'.
xoxoxo,
andi
Dianne:
Heyy thank you so very much for your comment in my journal and for the congratulations and very kind words and well wishes. I just checked out your journal and I must say WELL DONE! WELL DONE! Love your style of writing, you're a very good poet and writer, it shows. Keep up the good work girl, write, write, write, don't back off a bit, you're good at what ya do.
Oh and the doctors found no malignancy in me at this time, I am on medicine therapy and go back in 3 months for a follow up visit. But right now all is ok, thanks to prayers and God's blessing.
Thank You
Jeff
Faith and hope.... are good things to have my friend.
hugs,
Ellen
I wish I could just wave a magic wand and make it all go away for you! Linda
Nice journal. Drop by when you have time friend. Tammy
You know what? I just now, for the first time, got your $39.95 plus s + h joke. D'oh!
-Paul
http://journals.aol.ca/plittle/AuroraWalkingVacation/
(((((((Dawn dear))))))) Perspective matters, doesn't it? I find myself thinking (about me) what your mom verbalized. If I feel this bad at 57, what will my life e like in another ten years? Or another five year? And yet, I also realize that I am better off than many others.
When we get a picture of ourselves from someone else, it is often surprising. You, of course, are comparing yourself now to what you were feeling before the orencia or pre-dx. Your mom, of course, is comparing you now to what she wants for you, dear. Oh if only we could (safely and legally) 'take a pill' for more energy!
loving you
karyl
IF HOPE HAS WINGS, I SOMETIMES FEEL THAT MINE HAS JUST FLOWN OUT THE WINDOW.
You are so right about the tired feelings. I've been told that the illness will cause your body to be fatigued but, that your problem (or mine) will also cause depression and the depression will cause you to feel exhausted. I think they are right, physical exhaustion and mental exhaustion. Try to Feel Good, Regards, Bill.
Dawn,
I am so sorry your mother said that. I have been witness to the fact that you have said kind things to other people and tried to comfort them. I wish I knew what to say to you now. Well, I think it would be: Ignore your mother.
You have provided me with information I would not otherwise had because medical books are too clinical. You have also provided comfort and loving kindness to others. That is quality in itself. You have been a loving caring mother and a good wife.
'Nuff said. I rest my case.
Big giant hugs,
Dianna
Oh, Dawn. Your Mom doesn't know. Chronic illnesses, physical or mental, impact us in ways the 'normal' will never understand. In a sense that is a good thing, as it means others don't suffer, but it also means that they are not fully equipped to understand what we suffer. They can sympathize, but not fully empathize with our plight.
Be well,
Charley
http://journals.aol.com/cdittric77/courage
((( dawn, ))) don't you think that "the scream" an awesome representation of pain and fatigue? our lives in general after being diagnosed? while those with relatively good health (including mom) may sometimes look at us and think that the quality of our lives is awful (and that we need trade the cow for magic beans to "fix" us) it is because they love and want the best for us. they remember what we were like ... "before" ... perhaps, someday, you and mom can sit down and talk about what positive changes have occurred in you since your diagnosis. that might help her to see that you don't necessarily have to sell the cow ... yet ;)
((( big hugs and all my love, ))) trace
Mothers have away of doing that to us. And it's good to hear you are doing better.
Brenda
http://journals.aol.com/xomywayox/BrendasWay/
aww Dawn. Sometimes it is those who loves us the most that says something to us that can kinda throw us out on the loop. But then, you are open minded and you saw where's she's coming from and that's a good thing. You are a mom now too and sometimes we wishes/wants our kids to not suffer, and when we see them suffer unconsciouly/helplessly live around that, we tend to say things to 'wake" them up because we are soo tired of seeing them hurt, we'd wish it's us instead of them. Maybe this is your mom's feeling, I don't know, but I know I'd feel that way if it were my kids. Unfortunately, to us who are not in that same situation as you are, though we can be sympathetic, we'll never understood. Your closest family and loveones are affected the most but they too probably feels as helpless. It seems, in this situation--is that you're the one who have to understand them on how they see you living with this pain/fatigue. (I hope I made sense.)
take care Ok?
Gem :-)
http://journals.aol.com/libragem007/JournallyYours
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