A Very Bad Night

I am having a very bad night tonight. You see I own horses and one of the conditions I have with the barn owner is that for paying half board on one of the three I keep is that I clean his stall out every day. In the middle of a flare makes it very difficult but I manage somehow. Well tonight, was terrible. I had to rest several times while working and my daughter kept nagging me that once done we were going to have to do groundwork with them too. I was in no condition to be tugged and pulled on by an 800lb horse tonight so I told her I couldn't. She just didn't get it. No sympathy for the amount of pain I was in at all. She was just focused on how we had to work with the horses tonight. I was so hurt by this lack of sympathy. I should be used to this by now because I get this a lot here at home. My family doesn't seem to understand just how much pain I am in and how much it affects me overall. I wait on my husband, despite the pain. I wait I myself because no one will do it for me. If I need a drink, I need to pull myself up and go to get it, if I am hungry, I have to go make it myself. A lot of times, if the pain if enough, I just say forget it and go thirsty or hungry because it hurts too much to go to get it. And the worst part of it is I have absolutely nothing for pain right now because my pain management doctor believes opiates don't work on Fibro pain at all and won't prescribe me anything for pain. So here I sit, feeling very alone, in extreme pain, angry and depressed. I can only hope tomorrow will be better. And I hope my regular doctor can find me a real fibro doctor that will be able to offer me better care than I getting now. This is crazy....

Shannon, my mom suffers terribly from Fibro also...I still to this day forget that she has this terrible disease and that she maybe cant go as quick as I can or as long as I can at certain tasks...because Fibro isnt widely talked about, I can honestly say I still dont truly understand what the disease entails other then tremendous amounts of pain and huge flare ups if she consumes aspartame.....perhaps its that your daughter, like me, just lacks information?

Hi Shannond

sorry to hear bout your circumstances.

I used to help our a local community centre and as a bloke i often got asked to put away chaires in the main hall after a function. sometimes i could do it sometimes not.

this confused people no end. No matter how much i spoke about it (perceived as whining)people at that place did not understand.

in the end I changed where i do volunatry work,(their loss) Now I can do it on an ad hoc basis. The people at the new place dont understand but they did not have me as a free service, before i offered, so their expectations are very differecnt from the previous group. An adhoc service to their minds is better than none. hope you see what I'm getting at.

I can see you are in a somewhat similiar situation. in that you are having difficulty managing Your family's expectations. This is much worse than my own predicament above, you cant just walk away like i did above.

now your family has inbuilt expectations of your role, and unfortunately this has been re-enforced by you continuing to deliver despite your pain. I know you have done this wiith the best of intentions but this only makes it harder for them to believe you are telling the truth.

I am painfully aware that this may come across as critiscism. I do not mean it to be so but I cant really see how things will get better unless you can manage thier expectatins, and this would seem to be easier if they beleive or partly believe there is a real problem.

Is is possible for you to make more sandwiches rather than cooked meals. which willbe easier on your hands and fingers. If you do this its a change in behavior and a clear signal that you can no longer go as you are.

When i first had fibro i could nolonger walk and chopping veg, opening cans of food was painful for me. here i am now typing away, You can catchup with my story under "is fibro real". I have seen some fab posts there about managingthis conditon.

If your family can also see its not all bad, things can be done (but yes its hard),, it will be easier to get them on board.

Do you have many labour saving devices?

Also what is the pattern of your fibro. Can you feel it coming on days in advance.? (I can always feel a flare up coming) If so this can be a good thing as you can warn your family.

Do you have much literature on fibro. There is a great site in your country called WWW.vitality101 by a guy named Dr jacob Teitlebaum, he has had fibro and now treaats people.

This is a great testimony to use, he was on Ophra winfry. You can show your family the broadcasts online. The authority a doctor has will be a great ally in your struggle to convince your family your condition is real. I know that for me this was the most stressful component of fibro --- being believed.

Does your daughter know alot about horses? (sounds irrelevent but..)
You may be able to use this.. thoroughbred horses can get a condition called Azoturia (Ithink thats how its spelled) and remarkabley the symtoms are almost indentical to fibromyalgia in humans. there is a doctor here in England who treats our conditin (keeps horses too) and she believes this is equine fibro!!

I am sure your daughter wwould not want to push the horse to hard if the vet said it had the above. Perhaps you can be sly, tell the family your symtpoms then get the vet to describes this azoturia, and they may see the connection, you have an authority figure vouching for you.

Once they realize what they've put you through I'm sure they will be very sorry. Unfortunately people do need a celebrity or two to convince them, or an expert or three.

I am the owner of a book called "the fibromyalgia advocate"by Devin J. Starlanyl MD. A book written by a doctor (she is American) may again help to give you the authority you need to convince your family. In sterling it was £19.99 that was a couple of years ago.

you can call toll free 1 800 748 6273 to order or go the web sit www.newharbinger.com

Sorry this has been a bit of a mammoth post. I will look out for you in the coming days. if there is too much for you to actionhere all in one go, go for the Oprah winfry (she has so much kudos here in england, take it its the same there).

tarrar for now.

NB

Hey shannond. Sorry to hear about the lack of sympathy you receive from your family. Have you tried speaking to them and telling them exactly how much pain you are in and asking them for help with food and house work? Perhaps if they understood just how you feel then maybe they'd be mroe willing to help. Talk to your husband and kids about your feelings and how you feel unappreciated and are upset that they don't care. They care about you but maybe just don't show it in the way you'd like them to. Maybe if htey understood you, they'd change. Also, could you see a different doctor if the one you're currently seeing doesn't give you anything for the pain? Sorry you're going through so much right now. Hopefully the new year will bring you some peace and happiness =)

Help your family to understand more about your condition and set down some things that you can no longer do and stick to it and I am sure they wil help more.

I am in a similar situation at home. The way I explain it is it feels like some one is trying to rip my skin off and 1000 bugs crawling under my skin ( my husband is slow) he understands and tryd to ask less of me. And some days I just have to say no.
Please don't feel alone because you are not I am currently not on any medicine as well because we can't find anything that helps it. I have discovered its hard for people who don't have fibro understand the pain we go through day in and day out. I truly hope tomarow goes better for you but if not I'm here to talk and support you
Monica