Hey good morning,
This is I think one of the toughest diseases to live with because of the lack of understanding there is. Those few commercials helped us a bit. But we have a long way to go.
The other thing is we are all different in our levels of disrepair, that some are so much more functioning then others, so it is confusing to the normals.
My break through was bringing my husband to the neurologists and seeing my trigger point therapy. When he saw how many needles I needed and how many muscles were in trouble, he was OMG......I was liberated when she told me what muscle was making what symptom and I was vindicated finally in all their eyes (as my DH told my children...I was not crazy) He had gone to other docs and the answers were crazy......I cried alot.
He has stood by me, though when he is overwhelmed at the store and I am in a low...I can see it is straining on his spirit to carry me too. I try not to actually complain, I am just slow....
The complaining is done here. People don't want to know what is up with us. I saw a patient in the office a month or so back, I have to say...if she said. Fibromyalgia once she said it 900 times. Be careful to lay me down I have Fibromyalgia, I have to go to the bathroom again because I have fibromyalgia.....
The whole 4 hours she was with us. NOW EVEN FOR ME, the empathetic nurse...the one with FM....I was ready to throw up. If I heard the word again.
Everyone is different but you have to be strong in this, bring all the issues to the gang here, leave the family alone. Use other reasons for not attending. I have a headache, diarrhea...must of ate something bad. They get that so much better.
I just don't even try to get the crowd to GET IT. They can't.
Forgivemness is the greatest asset here. Yes I have made my world small, I do few things as I work full time..I have just enough of an 8 hour wellness window to do that. If the day is light and I get to rest in there I can do more.
My spirit is always willing to do things, it is the body that puts me in fear. Sometimes I say no to do things because of fear. That I will not make it through the event, or the head won't have support and it will trigger the hands and arms to hurt more. So I say no not tonight.....
For sure you have to get the house changed a bit, get light in there....change it up to brighten your spirit. To tune your head up takes talent and time. It is a game of stimulation. Doing things you like, listening to good music, reading books that you love. Making a list a small things you CAN do and not looking at what you can't.
Get out of SAD and get into MAD...that will give you energy to fix a few things. You are free to do it all now. No DH to hold you back. get a positive spin on this.
Sitting and brooding will bring more pain. Believe me that when I do a project here and cross the line, I fair much better in the end with my body....so execise and movement is a MUST. I grade the pain I have and don't push at a 7/10....or if I can feel a headache coming. I know QUIT and STOP. Rest up and start again if I can later. I also medicate.
So, long winded and all it really is , is bring the junk here...leave the family alone. They will NEVER get it. We do.
We are open 24/7. Dumping it here sometimes is all you needed. rather then hit someone you love with your frustration you heap it on paper here and you feel better.
Good luck and get light into your life. Flowers on the table and sun on your head......it is agressive therapy that you can do to brighten YOU. I always feel better after a little sun and my nails done....or a massage. I do it FOR ME!
YOU ARE VALUABLE....treat yourself that way, you are a gem! Good luck, Nancy B