Yes. That is what a picture is worth.
I guess I could stop typing.
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
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.
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.