Hi songbird,

Sorry this is such a difficult situation, made intolerable by an uncaring other. Unfortunately, we all seem to have these in our lives for periods of time.

I would have to agree with Littlepaw as to best course of action for a resolution that no rational person could deny you.

Dave.

Vent vent away! Please talk to all, one, some of us when the straw is about to break your back. We need your support here too. You are special even as this monster consumes us. Some People will always be inconsiderate until they experience what we go through every hour, and usually those are the ones who cry w just 1/4 of what we go through....
Keep up the fight, that includes venting when your pain is off the charts....

Hi songbird,

I am very sorry you are feeling overwhelmed. I know your feelings are warranted.

Any chance of individual and/or couples therapy?
There are advantages to each approach.

I did not understand you to relate that all of your issues/sadness come from your fiancé. Does he also bring you and your daughter some joy and some security? If you feel this relationship might be worth salvaging, there is no time like the present to work on this together. Our loved ones can become just as frustrated with chronic illness as we become frustrated. Our loved ones can act angry or oblivious to our pain and limitations because they fear losing us. Denial is a coping mechanism.

My husband and I are very happy together. We have a very sane and loving relationship. We'd needed some help understanding each other in the beginning. Yet, our understanding, compassion and love for one another has only gotten better with time. It's been over 20 years now. He is very sad and often feels helpless when I am in severe pain. He feels overwhelmed at times. Yet, we have learned how to talk about our feelings, frustrations, fears, disappointments in a calm, heart-to-heart manner, whereby nobody is offended and we more fully understand one another. Better yet, as we share, we understand some seemingly negative feelings really stem from the depth of love and the fear of not being able to help enough or the fear of losing one another early because of increased illness/pain. Couples therapy, back in the beginning of our marriage, helped us to communicate with one another on a deep level. We are truly best friends.

I hope you find acceptance and support -- in your current relationship if you are open to continuing with your fiancé -- or in the future, if you are looking to move on.

Offering supportive, healing energy to you.

So glad you have reached out!

DejaVu

Your not alone..
No one should ever give up.. ,and waay even more so since you have a family. I often feel like I am a burden or just plainly I slow everyone down no one wants to go anywhere with me or be seen with me... i always tell them I dont need a pitty party lol I just wanna get out of my 4 wall self prison.. We can all use some sumshine

I am always having a tough time with being understood that I need my distance or that I am not exaggerating or using my sudden pain as an excuse... Some days I cant get out of bed the pain is unbareable therefore i will be unbearable as well.. I get frustrated if it was easy for me to move around.. "I'd be a professional dancer by now."

nothing is ever wrong with venting hun
**big hugs**
please stay strong

mandy~

I forgot how therapist it is to talk and listen to my fellow Crps WARRIORS can be!!!

..

My brother is in tow, after not seeing him for years, he's staying at my house for a while in town for business!! I was thrilled.....was...My is very good
So part of my escalating problems yesterday (only the least out of everything), was silly e tough the Seahawks game.... I'm a 3rd generation fan lol!
I had decided to spoil myself that day by getting a whole new look with my hair.I used to have purple hair in HS, over the years I toned itdownforwork keeping to, not quite natural but close,vibrant reds, blondes, brunette......
Well I recently let my 9yr death hear P hair blue and green, Seahawks blue and green. Lol. Shelli is the most caring, respectfull,WILLINGLY HELPFUL, child I have EVER known!! And it's NOT being said out of Maternal bias!!
So, with the first preseason game at 7pm local time, my hairt appointment at 4pm, and had three hrs to get hair done, pick up my daughter PLUS her BFF who's also an absolute SWEETIE,pick up 3 items at the grocery, and then home! To make mobile hiegh nachos!!
Well my appt lasted much longer than originally expected....
To clArifying. I'd decided I NEEDED A MAJOR CHANGE!! To recapture some of my youthful exuberance, vitality and spirit of fun, especially since I don't have to tone it down, I chose a mix of blues, teals, purples!!!!! Well out had unbleached first....yuck... so I sat for almost 3 1/2/hours lightening my dark brown hair! Rushed, gorgeous and her friend, went to the store, back home one 19 mins into the game, but still had to make the nachos...
I was starting to get angry, mainly because no one had bothered to wait for me or pause the game while I was cooking, but also became fiance had been such a jerk to me a long time but could easily joke, laugh, and be all buddy buddy with my brother....so ya I was probably shutting the cupboards and such a little hard but I wasn't in a rage or anything just a little passed, seriously only a little.....the loud sounds were mainly due to me being in a hurry to try and watch the game!!
But ever since I had to pick up my daughter I'd started hurting quite a but, my legs mainly, and it was reaching the unbearable..to the point tears were running down my face, at this point my brother came in and started acting a little passed at me, and quite a bit patronising.....
He started to call the kids to get their food and I said no wait let me get my tears wiped and face dry as I didn't want the friend to be worried or stressed about me carrying, my daughter would understand mor, although I try to not cry around her if possible as well ....he got more angry handicapped them in anyway....this point my pain was truly heinous, and I went to lay down in my room, in the dark to breathe through some of it and find my center as well....
I thought everything was fine today, but my brother was still acting a bit off, I found why tonight.....God...
So he had bulging disk with an annular tear and related problems from a work injury a little while after my injury happened. He's now permanently partially disabled, and suffers from a fair amount of pain
himself on a daily basis.. but tonight he basically cornered me and had what amounts to a emotional and physical Intervention.......with him only...
So he says that I came stomping and storming in the door, then acted like crazed person with the noise I made and thought I wasn't accepting my Crps Kimi and thinks I want to scream, kick, and cry out my frustrations, nor have I accepted my limitations on what I can physical do......this is just based on the 5 days he's seen me......we talk about once a month and I hadn't seen him since I was diagnosed......this one hurt, two offended, and three frustrated me to the point of tears!!! Plus I've only had approximately 4-5 hours of sleep in the past 4-5 DAYS, and am experiencing extremely high premenstrual symptoms, though they NEVER make me blitchy thankfully lol.....
So he's getting very adamant about me not accepting my current physical state.........how can I not accept nor deacel with my Crps limits I'd like to know seriously! But my fiance didn't even have any issues with how I'd acted!!!! So he's arguing with me about this and I'm getting angry along with deeply offended and then he staid I was acting like our older sister did and she's the most negative, sour, bitter, and most bitchy person I know!!!! I kept explaining I a

Geeze songbird, take it easy. You need to calm down. Stop beating yourself up. You're only one person. Ask for help if you need it.

hi songbird. i know how hard it can be to deal with life especially when one has rsd on top of it. but you should never give up. you have a daughter who loves and needs you. and you are not alone because you have all the awesome people on this forum who care and understand your pain . just hold onto tomorrow. things have a way of working out. it just takes a little time and patience and hope. sending gentle hugs and healing thoughts your way.

I've found when I spend a week with my relatives, they are able to get a better handle on what I deal with daily.

Although you might not appreciate your brother's delivery, I suspect he's probably 1) right and 2) he's concerned about you.

Prior to starting on a combo of meds that worked for me, I had spend 3-4 years in high level pain with little to no relief and very little sleep. When I did sleep I wasn't getting enough REM sleep. It completely changed my personality and my family was constantly questioning if I was angry at them, even though I wasn't.

It also took me years to accept my limitations, to learn to adapt and to be able to accept help when needed. When you have a child in the house it does make things more difficult.

Your bf is thinking of you like you're a Stay at Home Mom, instead of someone that happens to be home because they're unable to work.

I agree working with a therapist is crucial. If you can find someone experienced with chronic pain patients, even better.

You need to sit down and figure out what you must do everyday/week, if you can do things differently so as to not exacerbate your pain, and if your bf and daughter can contribute more to help, or if you need to increase outside help.

I found I really need help twice a week when I didn't have a high quality dishwasher to keep up on the kitchen adequately when I was living alone. I've lived without one, a version where I might as well have not had one, and finally a good quality one, where a quick rinse is all I need to do. If you're going to cook, your daughter and bf should be able to rinse and load their own dishes. Your daughter is old enough to reasonably ask for help in the kitchen prepping dinner and cleaning up, and maybe she can receive an allowance in exchange. I also bought a roomba to take care of my floors, which I felt was a good investment.

I've also learned to stock up on things so that I don't have to make extra trips to the grocery store. By shopping at Costco, it saves me money in the long run... I buy things like cheese and meat and portion them up in freezer bags if needed. The same thing would cost me 4x as much at the grocery store and I don't have to make any extra trips. (Maybe plan a shopping trip once a month with your bf, so he can do the heavy lifting. It'll take an hour or two.) If you live in an area where you can get organic produce delivered weekly, that's great as well. I even use Blue Apron once a month or so.

When you have something that is particularly important to you, like watching the game and making dinner/snacks for the game, that REALLY is a day you shouldn't plan anything else major. Schedule your hair appointments when your bf is gone, your family isn't around, and your daughter is at school. Next time, even plan a nap or a few quiet hours before the game to rest up. --If you don't make these type of priorities, the adults around you will question your priorities. I understand why you wanted to have your hair colored, but it didn't to be done that day. If you were already flaring, your reaction might have been much louder and angrier than you realized. (It becomes a weird thing when family members feel they need to focus on our pain levels if we're not adequately changing our activities as we flare. They start looking for cues to anticipate emotional outbursts, anger or even wanting to control our behavior themselves because they don't want to see us in extreme pain. And that just isn't healthy for anybody, especially children... I had a friend whose mom had been chronically ill before passing when she was a teenager. She was more attuned to my pain level then I was, which made me realize I didn't want my son to turn out the same way. The best way to avoid that was to avoid flares whenever possible.)

When my son was your daughter's age and until he left home for college, whatever he needed was my priority, but I was also single, so that made my life less complicated. You need to also make your bf a priority if you want it to work. Plan a date night with him, and make sure you rest to be able to enjoy it. --This can even be dinner and a movie at home while your daughter spends the night at a friend's house.

It is not an easy or quick transition to figure out how to live a contented life with this disorder, but it is possible. Everyday you have to balance the risk/reward of every activity you do and how those things impact your life and your loved ones.

"Didn't want to cut you off because you said a lot of helpful things, bit I wanted you to see my response"
Grr....unfortunately, my tablet cut off 1/4 of what I said. ....plus I was using voice speak which messed up 1/2 of what I DID say.....grr
Anyway my main beef, so to speak, was my brother judging what I did do over a.period of 5 days......with a guest...
Granted it was family but still.....you want to keep your house somewhat presentable.....
Since I started my new med, Mexilitine, which is essentially an oral form of Lidocaine, I've had VAST improvement!!! I'm so happy!!! My daily pain, except I've had some outside medical issues exacerbating my symptoms, has been down to a 3-4 and sometimes a 5 level daily pain!!! HUGE improvement from an 7-9 daily average!!
And I've told him this, he'd been drinking some toi, but thought to bring onthis "intervention " type style of expressing concerns about my activity level......but never asked what my doctor and I have discussed as far as recent plans or activity limitations. And when I tried to explain it he turned it around to me "Not Accepting" my "Situation" as he so ineloquently put it.....
And seriously WOULDN'T understand that I DO know my limitations and conditions EXTREMELY well.....and wouldn't do ANYTHING to set back the progress I've made!! THAT was the issue I couldn't get across in my initial post!
That because I'm the "kid sister" I wouldn't or couldn't understand the FULL ramifications of MY condition!! I didn't explain it well because I got caught up in trying to explain the "back story" of the catalyst situation!
Plus have since asserted myself AND my KNOWLEDGE I f what !""I""! have endured since, and the most I can learn about
CRPS!!!
Hope he's realized I'm NOT a child needing his guiding light during my battle...or that it's the ONLY thing that's keeping me alive!!
I thinkvit was ore guilt on his side seeing how difficult things have been for me, and the fact he hasn't been here to help me since our father passed away a bour 1yr before I was diagnosed!!
So....I will apologize for the incomplete DRAMA!
And thanks Lit Love!! Your suggestions are awesome!