Fibromyalgia since 2007
"Tragedy is a tool for the living to gain wisdom, not a guide by which to live." Robert F. Kennedy
Oh Donna, don't feel bad.. he probably thought you were still half asleep.
This little story will hopefully make you feel better.. a couple of years ago my brother in law stopped by (which he never does.. he's legally blind, just like my hubby, and can't drive.. so just popping in is really unusual.) I had no idea who he was!! And this guy is family!!! He had sunglasses on and a baseball cap. I yelled to hubby, "honey there's someone here for you and I don't know who it is" I wouldn't let him in till hubby got to the door. Imagine how embarrassed I was when it turned out to be my bro-in-law. (lol.. with the baseball cap and sunglasses the guy looked like the Unibomber and scared the crap out of me)
Here's another one... my hubby's best friend stopped by one day and I didn't recognize him at first because he had shaved his head!! I saw that guy a couple of times a month.. you think I'd know him right off the bat.. but NOOOOO. Again.. scared me half to death when I realized I had no idea who he was. (I thought I was losing my mind).
Hope that put your mind at ease a little.
BTW... I didn't sleep very well last night either.. I think it's gonna be a nap day.
Donna, don't let this upset you at all- You did not get much sleep, and you were groggy and in pain. It's not like you are close to him. I would not have remembered him either! In fact he would have scared me half to death!
If it makes you feel any better, I can carry on a conversation with my son when he is half awake and he will not remember a thing- and he does not have fibro!
Love the chocolate on the cheek part though!!!
Donna, you have no idea how many times this has happened to me! People will come up and say "Hi" and use my name and start asking me a bunch of questions about my family, etc. I not only don't know their names or recognize their faces, I don't every remember seeing them before! I just do a lot of smiling and nodding!
Hi, Michelle. Welcome to the forum! You asked if we ever get 'lost' in our own conversations - YES! Not a day goes by that I don't have that kind of conversation. It is bad enough w/ my family, but that is one of the biggest reasons I had to stop working. I had a classroom of students, halfway thru a lesson, and I just lost the entire train of thought. I figured, 'Well, that happens to everyone, once in awhile' Yes, but this happened several times a day - everyday. Most times my children will ask me again what I meant by some word, b/c I use the wrong word that makes absolutely no sense at all. Most times I give them a look and laugh it off, but it does bother me.
I had to go to the bank to handle business for my mother. The lady there always helps me w/ my DM's stuff. Each time I go to her office, I mess up some word. Today, my brain was trying to say 'transfer', but my mouth insisted on saying 'transport'. Bless her heart, she never laughed at me, she sat waiting till I could finally get the word out of my mouth. I will even go over what I want to say before I go somewhere, doesn't matter. I still screw it up.
I have started many a conversation, to get sidetracked, and totally lose the point of the story.
You are concerned about possible complications from the coma, I don't blame you. Have you spoken w/ your dr? S/he should be able to tell you if any problems your are having are a result of the coma. But memory problems and confusion are also things that many of the ppl w/ FMS have. You are still the same good person you were before, you just have health issues. I don't know how old your children are, but maybe you can give them some info on FMS on their level of understanding. Explain some of the effects of this DD. To help you better understand the 'joys' of FMS, look to the 1st pg for Fibro 101, a lot of great info there. Read the back posts, you will see ??? others have asked, and suggestions that were given. Also, keep asking questions. That is what we all do, we are all still learning about Fibro. Remember, you are not alone, we are all in this w/ you. God bless. Alice.
You just have no idea how much your words of kindness mean to me! I am in tears right now because I have felt so alone. I'm a 37 yr. old single mom of three teens. 17 yr old daughter, 15 yr old son and 13 yr old son. The medical issues began about two years ago. The pain has increased to the point that I sometimes don't know if I can go on. I can't really explain it to them because I don't understand it myself. My primary doctor finally got tired of me and sent me to a Rheumatologist who said it is fibromyalgia, and that was it from her. I don't tell anyone I have it because when I told family members (sisters ect..) they said that "fibromyalgia is just another way of saying that it's all in your head". The Rheumatologist said that I need medication to help control the pain but my primary said that he sees no medical reason to give pain meds for fibromyalgia. So how can I explain something that I am totally confused about myself. I don't go around people anymore because I just make a fool out of myself, I get everything all jumbled up and I get embarrassed easily. When I get embarrassed I have a panic attack which just causes further embarrassment... I won't even talk on the phone anymore, I will only communicate online with people. Boy, reading back what I just wrote makes me see just how pathetic I really am. I'm sorry for bothering you with all this. Thanks again for your kindness, if only everyone were as understanding as you this would be a pretty awesome world!
I have: Fibromyalgia, MECFS, Holt-Oram Syndrome, nasal allergies, depression, TMJ,
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
Michelle, you're very welcome, but the ppl here have been thru the thing of having ppl doubt or hurt feelings. We don't need that around here, this should be our safe place to come and talk and feel comfortable w/ our emotions. The other good ppl here have always treated me that way, they have been so kind and caring. That is the way we should all be, IMHO.
The rheumy seems to have got a grip on the situation, maybe the meds will help w/ the pain and panic attacks. It sounds like it is worth a try. Your PCP on the other hand is off base. You are in pain, it isn't in your head. You might want to think about another PCP, someone who knows what they're talking about. Read up on FMS first, a lot of info here, books in the library, etc. Arm yourself w/ info, then call drs. offices and ask if they believe and treat FMS. That will cut your list down considerably. As far as the nay sayers, if they are not going to be in your corner and don't even want to hear what you and your dr are saying. DISTANCE yourself. You don't need negative energy. You need ppl that are 'with' you. That is just fighting two wars. I've gone thru that several times, one person in particular didn't believe what I was saying, she kept mispronouncing the word Fibromyalgia, as if dismissing it, when I said it correctly, I was told, "Whatever". I don't have time to be treated that way.
When you have a bit more info to make you more comfortable w/ FMS, sit w/ your children, explain what you know, let them read some of the info. You don't want to scare them w/ the unknown, let them see what is going on. Let them help w/ family matters, chores, etc. It will give them a chance to help you and let them know how much you trust them. The four of you are a family, the four of you need to work together. If they know computers, and I'm sure they do, let them help you 'find' info on FMS. They may be very worried now, b/c they don't understand what is going on w/ your health. This may help to settle some of their fears.
I don't like to use the phone, either, but it is necessary. If it's a personal call, I will tell the person when I'm getting tired and I know the 'fog' is rolling in lol, I need to get off the line. For business calls -which I hate, but necessary - I write everything down - EVERYTHING, my name, add, phone #, all acct #'s, what I want to ask/tell, etc. It is work to do this, but I can generally get my pt across and get my answers. I'm not able to run around like I used to, I need to make these calls. Don't isolate yourself, you have this one life, don't let anything/anyone cut it short for you. You have every right to enjoy each day. Take time each day to go outside for something peaceful. Sometimes, I just want to stay inside, that is when I MAKE myself go outside. I will walk my beloved dog, walk around in my yd, walk on the boardwalk a few blks from my house. I need to reduce the clutter in my mind. You are not pathetic or a bother, pls don't feel that way. We have all been upset w/ this DD. Keep writing, keep reading, keep asking.
God bless. Alice.
Thank you all so very much. I actually feel so much better emotionally since "talking" to you guys! It's a great thing you do here, comforting and being "there" for eachother. I am really glad I found you guys! I honestly believe that God lead me to you at my lowest point (hope that doesn't offend anyone). Thank you for welcoming me. I am going to go read that fibro 101 that you suggested. Also, ibprophen/asprin products cause me to vomit blood so I can't take them. My doc gave me Mobic and I ended up in the hospital vomitting blood so he wont give me anything like that anymore. I do take tylenol, ALOT, but it doesn't help at all. I don't know why I continue taking it, guess I figure that maybe if it "builds up" in my system it might do something lol. Well guys I'm off to educate myself. For the first time I have a skip in my step (at least my mental step anyway ) thanks to you all!