I have: Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety
Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren
As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11
Oh Denise and Patsie, I could have written both of your posts. Today my right leg hurts so bad from my hip down to my toes that I just want to pull my hair out! Yesterday, I felt pretty good. Why the difference? Who knows....
I swing back and forth from frustration, denial, guilt, acceptance, optimism, depression, anxiety, hope, and despair. On any given day, my emotional pain/distress is just as varied as my physical pain/distress.
There are days when I feel like I'm doing okay with my acceptance of fibro, then a new symptom will hit me, and I have to start all over again.
I've also had trouble with guilt over not being able to be all things to all people like I used to try to be (I think a lot of us are giving perfectionists.) I also have moments of thinking, Is this "real"?, because I don't look sick.
I've been having a lot of trouble walking lately, and I'm having a really hard time accepting the fact that I may need some kind of "walking aid" soon.
I'm really working hard at acceptance and not feeling guilty, but it is so very, very hard. Patsie, one of my husband's favorite sayings is, "It is what it is." I'm trying to adopt and live by that phrase myself. No guilt. No fear. No embarrassment. No feelings of inadequacy. No apologies.
Hugs - Austen
Post Edited (Sherrine) : 2/17/2009 9:31:28 AM (GMT-7)
Thank you, thank you, you have all helped me so much. I came earlier & read your posts & had to go & think about them for awhile. There was so much there to process. Mind kept jumping from one thing that was said to another. It is hard, sometimes, to apply counsel to myself & make a change in my thinking but with your help I have been able to start. You have all helped me to see that this is something we all have to go through & somehow I am stuck.
Patsie, your right I have been thinking negatively about being ill & putting on a strong front. It is wrong. I can see that, wow, I have always done that, been the strong one. & your right I don't want people to see me any different even though I am. I want to be normal. I really have thought I could get my old life back, maybe not consciously but I know it was there.
Austen, the swinging back & forth in my emotions does keep me off balance too. I guess I never look at this a an emotional thing as well as physical. I have been trying to deal with the physical symptoms & not addressing my emotional issues. I do have a tendency to clamp down on them like I shouldn't have them or they are bad. I hadn't realized that.
Sherrine, Guilt definitely doesn't apply with this illness. So I tried to think of the alternative which is shame but that doesn't apply either. It made me think about where that has come from & it is because I look at how I think others feel about my illness & not how I feel, & what I know to be true. So I try to be ok for them. Boy, how disfunctional is that??!!? Wow, you tell people once & that is it & it should be it. As I said earlier, I put on a strong front but not a positive front.
Well, i will need to think about this for awhile but I can tell it will be one of those "AHA" moments in my life. Thank you for the good advice & for helping me to see this illness for what it. "It is what it is". What a great place.
Many hugs to you all, Denise
I've had to deal with losses before - but this time is different. Right now I'm wondering if there's difference between resignation and acceptance. I think there are different phases.
I can accept my physical condition. Like most of you, I knew there was something really wrong for several years before we figured it out. So putting a name to it didn't seem to be that traumatic.
Accepting the sudden change in life is another challenge. I hit a wall too with the work thing. Pretty hard. But in the last 40 years of school and work, the most time I've ever had off at one time is 3 months. Over the weekend I was still hoping treatments might stick to some kind of a vague schedule. NOT. I meet with my doc on Thurs and I'll discuss this with her ... what are realistic expectations. I think we're settling in for the long haul.
My parents were from the Depression era, and maybe that's where we got our strong work ethic. There's probably some guilt over not working now. But it's also a 40 yr. habit. Can you do something that long and then all of a sudden ... bam ... can't do it anymore .... and that's all OK?
B. emailed a letter to the kids over the weekend. Basically we can't do visits to grandkids, gifts, etc. like we used to. It was very difficult for her to put it together. But it was a part of her grief process.
Does anyone else ever feel like they're just hanging on to life like a roller coaster ride and just tyring not to get thrown off?
There is Seattle area Fibro/Fatigue board and their site has a number of suggestions for dealing with low energy. I was already doing most of it. But one that stuck with me was the idea that ... try to come up with a realistic plan for each day .... cut it into two pieces, and then do the smaller one. lol ... seems to work..