Fibromyalgia: How do you cope?

Bravo ❤! So well said.
Your note just came directly for me (from God).🕊🕊🙏🕊🕊
Thank you from my heart and kudos to you and your great attitude 🙏❣🕊

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This fibromyalgia thing has kept me from getting the help I need. I have a better day and do more things. A pain level of 5 (the pain scale 1-10) is a good day. I tell myself I can do this all of the time. I tell myself I am not trying hard enough. I tried again to do physical therapy. Before this thing that has been labelled fibromyalgia I could do the things to keep muscle tone.
Now even on better days I am hesitant to be out because I then look like I am faking and I am just lazy. These are people that never knew me before the fibromyalgia. They see me as a burden on society.
Is it any wonder I have chosen to be solitary?? I see myself as not trying hard enough .Maybe I am not. Physical therapy worked a number on me. I keep trying to get back to where I was. This is how they weed out the ones that are lazy and don't want to get better. Maybe I don't. Maybe I am all the things I think I am.
Confused. Even spell check does not accept the word fibromyalgia.

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@Parus....Oh, my, if the idea that I think you may want pity was conveyed in my words, then I take them all back! I know that is NOT what you were saying. Sometimes I am a blathering idiot, ramming around, and offending people, AND too blind to notice. Nope, I know better. We do not want pity, but a wee bit of help and understanding would go a long way. I don't hold my breath regarding understanding. No matter how I try, at this point, I can not truly understand what cancer patients have to endure.NO you did not strike me as pathetic. Frustrated, tired, scared...not knowing how long you will have to endure. You are in a dark place, and you are in good company. Chronic pain is a dark place. I want to get better at living in the light despite everything. When I don't do well, and yes, I have my days, but when I go dark part of me wants to stay there. But another part of me hates it and wants to live in the light.

Head pain here 24/7. One of many clingons left behind from stroke. In my cerebellar region, but not only there. Head pain creates a veil between us and everyone else. When with kids and grandkids, I really despise its a constant wet blanket on our visit. But to be with them is ever so much better than to not see them. Sometimes even talking is hard, so I just enjoy watching them play and listening to them.

Parus, you are not pathetic. Pathetic is the person who quits even wanting good things. Pathetic is not being able to acknowledge our blessings. Seems I have given offence. If I did, your response was very gracious. Thank you.JMJ

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@parus
Yes, it's easier to stay home. The challenge is in doing the better thing. Which is to go out and face the day. To interact, even in small ways. Try to do the small things you can do, well. I set small goals...get groceries, check in on 88 year old father, enjoy my grandkids. The more I laugh and enjoy others, the more charitable I can be about them "not getting it". Every time I go out that door, I do myself a favor. I am more inclined to be alone, reading, or just staying in my comfort zone. The more I do that the easier it is to forget, hey, I have something to offer. Even if it's just helping an elderly person with the door, reach items on a high shelf, carry stuff for a struggling young mother. I am only as good as I give. Life comprises so much more than the sum total of my infirmities. We are valuable. Maybe we can't do big things. But we can do small things well.

The more we turn inward, participate less in life, we diminish our quality. Yes, it requires effort no one can know. And yes, it hurts to just get ready to go out. And NO, people aren't gonna get it. But, they don't need to for chronic pain sufferers to participate in life. I can't wait until those that should understand (because they know me) me, actually DO understand. I can't wait for that because life will pass me by. I miss too many opportunities to GIVE. There are no exercises, therapies, supplements or meds that can provide the boost to my wellbeing mere participation does.

I truly know how you feel. One part guilt, one part uncomfortable in your dysfunctional body, one part scared to get out there, and one part questioning our own sanity. I get it. Fibro is just one of my conditions. Conditions that would have crushed me years ago. But with each health challenge, instead of taking me down, I experience victories. Yep. Small ones. Not significant . But every single time I get out and do something, there is a satisfaction I won't have in seclusion.

I don't thrive on pats on the back, don't need sympathy, but I do need to participate. My husband buttons and zips me. Carries my drinks, helps me clean the house, helps with all the things I can no longer do because of brain damsge. Then he let's me go out and about, doesnt hover over me, because he knows it's good for me. I'm glad for his help, but prefer to do all I can on my own. Unfortunately, that doesn't include my hair. Dysfunctional left arm. Yes he even tries to help with my hair, lol.

Forgot to add....yes, there are days I can't get around, days I can't psyche myself out, days I lay around, throw up, rock my sorry head, but those days are not all my days. Do I like the new me? Not much. Am I a better person having to struggle with things others take for granted? Probably not. The new me is different. I cant go back, but neither do I want to waste the days ahead. God has given me time to use. He didn't take me with the stroke, the aneurysm, the ruptured uterus. Could have. But for some reason He saw it better to keep me here, which I am grateful for. The opportunity to rise above my disabilities and just grow up, give, and love. And yes, it's been so stinking hard, but well worth it. My family makes the efforts so very worth it.

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For the past couple of weeks, I have been in a real funk. It's one of those things I can't put my finger on why. I don't want to go anywhere or do anything. Among the meds I take for Fibro, I take meds for depression and anxiety, yet I have had two panic attacks in the past week. I feel really alone although my husband and grown son live with me.
.In the fall when the clocks change I suffer from SAD- seasonal affective disorder. It generally occurs when one is in less sunlight. Do you think this could be part of my issue? Mornings went from sunny at 6:15 AM to dark until 7:15 AM. It is light later in the evening now.

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