Too frustrated for words...

Going to go to bed and lay in pain for three more days.

(((((Tam)))))
Hope you feel better soon

((((((((Tamara))))))))

let it all wash over you. it comes. it goes.

It WILL go.

and it may come again.

it's like the ebb and flow of the tides. You have to know the badness will go away - ride it out for the good portion of the tide.


(this is my mini-mantra to myself that helps me hang on when I feel like I have nothing left to hang on to)

Anne

Hello Tam; Please go easy on yourself. We are not really all that different. We are living with chronic pain. I know when my pain increases to levels that I can't deal with I get angry, mad, and depressed. There is alot of emotional termoil trying to deal with physical chronic pain. Even when I was well, I had bad days. Unfortunately those that are well don't understand what we deal with. Somedays I can't get out of my own way. Somedays I hardly feel like moving, while other days I almost feel normal because my pain levels are at the regular steady 4 or 5. It's a cycle CHRONIC PAIN. Trying to live a normal life becomes immpossible, we do more and as a result have more pain and as a consequence become depressed. If your loved ones have thier nose out of joint you could say I'm sorry but I really was having alot of pain. Don't beat yourself up. You are doing the best you can. I for one feel that you contribute alot to this forum and you are a big help to others. Thankyou for this. Tam take care and know no one's perfect.HAPPY BELATED BIRTHDAY!!

Thank you for the comments. I am printing them out, to read them a bit repeatedly, as I am in a funk.

It seems like if I try to be "up", and pain is less, if I make fiance laugh, focus on him, and try very, very hard to keep up with him (while still at home though), we are ok. You know, if I'm still close to the person mentally I used to be, before TOS. But when I get the high pain, and go into the fetal position in bed, it's almost like he gets scared, then makes a fight about anything, and packs up and leaves me.

So now I've got the fear of the high pain plus the fear of these break-ups and being left alone and needing help (new nursing is not in place, and he leaves when I'm at my worst physically.)

I feel at fault because if I'd just hold my words back - not react to his words - then maybe it wouldn't happen... No one wants to be thought of as an "albatross around someone's neck." I mean, none of us are losers!

But my pride sure does cost me.

I finally, finally got some sleep. And oddly enough, once I started sleeping, I slept all night, all day, and until tonight...and now I feel human again. I felt CRAZY yesterday. Those electrical zingers have stopped in my brain - that's one symptom that really wigs me out, too.

Thanks again for the outpouring of understanding and support and giving me back a feeling of being cared for. I really missed my grandmother who passed last May recently. If you have someone in your life like her, who gives you love, take and share as much as you can while we have the time together, because I sure miss her every day. I don't know what I'd do without you all.

Tam
If we saw our children in that kind of pain we would pack them off to the ER for the CrapShoot, of a doctor to being down the pain level. After all theyu can;t release until they reduce symptoms or admit.

I found when I took my kids in off the chart pain, an IV started; a dose of Toradol and valium, and they generally give something like demerol, is a good start to reduce inflamation, spasms, and ultimatly some pain.

I have gon into the ER with tears running down my face with cervogenic head pain and this concoction helps so much if docs listen. When the nerves are super inflamed they do not come down from opiads, they need some anti inflamatory, and something to work on the spasms. They could shoot Demeral off the chart and it won't touch the nerve pain.

I hope you feel better. Tam, I know you have a long endearing relationship wiht you fiance, but why in God's name would he leave when you need him the most. That adds more pain to you. The emotional truma of in and out has to contribute to bracing, walking on eggshells and stress.

Can you both get into counseling to get rid of that part of your relationship. You have to work through it, not accomadate it.
My love
di

Thanks DI for the ER info. I never thought of asking for that help, as I've not had such good ER results, but with that info., I can pose it that way which makes sense. If this doesn't break, I think I should get a cab to the ER. My meds are set to be delivered today, I am hoping. Probably won't make it 'til Tuesday though...

As far as fiance, we've dones counseling, he does not change, it's been 14 years, it is what it is. I used to be the ROCK. Now I am the SICK ONE. He has been GREAT for standing behind me, keeping the house together, doctor appointments. But then, at other times, he just ups and bails.

I cannot blame him. He is affected and influenced by me. I am the leader. So if I'm up and funny, he's charged up. If I'm down and negative due to pain, he gets paralyzed himself, filled with fear, and like I said, anger results. and during the last 2 years, his resentment of the volume of work he's done, with NO help from my family, and no reciprocal help from me - (what could I do?) - he's just an angry man, wanting a fun, normal life.

We used to work very hard, but take off about every other weekend to destination vacations. The old "work hard / play hard." Heck, the month I got sick, we were supposed to BUY the beach house. EVERYTHING changed with TOS. And we aren't married. So I say, go if you want to go. And he goes, then he misses me, then he returns...this is the pattern now. At some point I fear he'll meet someone else, and won't return. That will be more painful than a respectful parting.

It's also TIME for this. It seems to have a pattern. Every birthday (Sept.) is awful. Then Christmas / Jan. Then Easter starts to get crazy and by June it's nuts. In between he is very kind, generous, thoughtful, etc. But these fights seem to have almost a seasonal timing to them.

He's also a Sagittarius, which whether one listens to that stuff or not, they are adventurers. Not much adventure with your other half on the couch. What he used to bring to my life WAS adventure - I can't tell you all of the fun things he got me to do, to get out of my work-all-of-the-time stodginess. He made my life come alive. And I am thankful he did, before TOS hit in year 12 of our life together.

So I have no real animosity here. And I'm trying to still grow as a person, which is why I'm so angry with myself for REACTING when I could have said nothing. Or just said, go ahead and find your own place, no hard feelings.

I don't know how I'd react if it were the other way around. I have no idea. TOS is so weird for others who are not experiencing it. You can't see it. It's not like the usual illnesses.

Lost home, temp. loss of home care, temp. loss of car, loss of phone (long distance anyways), no kids around, and now loss of fiance...I'm really doing great! No wonder my symptoms are sky high...haha...

These things pass though, and they do get better.

I guess each has to work out those difficult relationships as best we can.

My bro has an on/off relationship with his wife too{separated}.
She has serious health problems, no income, not approved for SSDI ?, no ins coverage of her own.
they are still legally married so he is providing medical coverage for her.
It's a tough situation.

Hay Tshadow have you ever had him sit down and read some of the posts on here so he might get a better understanding of what tos is all about. And he is not alone in hes feelings that every last one of us who have partners understand that our other half's who are healthy get angry and frustrated with having to take on extra responsibilities because there love ones are in chronic pain. I believe that this is part of being in love is all about if he was in your place would you stand by him maybe he needs to hear that from you. Times like this i think it is very important to set and talk with being very honest about both of your feelings and what you can do for each other to make things right. The guy i am with knows me no other way we got together when i was in the pain from tos and has been here through all the meds i have tried and now the surgery. We fight about chores we fight because he wont's me to do every thing with him but i just don't wont to because of the pain there are times i just buck up and go with him or other times when i haven't done anything i well surprise him and say lets go out for supper or just a walk and he thinks its great. But i think the key for us is we need each other and we understand just what our needs are. And we both no that this is it for us we well never leave one another it has taken both of us all these years and many failed relationships to have crossed paths and come together as one. I know it sounds sappy and naive on my part to believe that we well never part but nether one of us has ever felt this way before about any one else. There is a very strong bond between us and part of that is being able to sit and talk and be honest with each other even if it hurts one of your feelings but it is the only way we can understand and try and change to make it work. Well i hope every thing works out for you and even though you can't see us you know there is a lot of loving and caring people out here for you and all. Hang in there it can only get light after the dark.