[CRPSsongbird]

I get so tired of trying to be positive/optimistic ....whatever......no one in my life seems to either try to understand or even give enough of a crap to try....if it wasn't for my daughter......neither would I. I can't take this life anymore....can I give up yet? And if not.....why? What's the point of feeling like such a frolicking burden?!. .....SORRY just venting.. ....really hard day....

[EnglishDave]

Sorry songbird, but you cannot give up,

You even mentioned a good reason in your Post - your daughter. I doubt she sees you as a burden at all.

You just need to reassess what you are trying to do that is causing pain and difficulty, then slow down, time activity to co-incide with meds and really learn to accept the help that is offered you by family.

Try to spend more time explaining rationally your limitations. I know this is hard, I have to repeat myself to family most days.

Vent away all you want and need here, just know that this will pass.

Dave.

[Wiix]

Songbird, why? Talk to me.

[CRPSsongbird]

It's just sometimes I almost think I can handle this now, and out of nowhere get smacked down, so hard, so fast, and everything g cockeyed....and it takes MONTHS to get back even a small portion of the control of my physical ability, or inability may be more accurate, back.....
And all the while I feel like I'm screaming at the top of my lungs, silently, trying to know if even ONE SINGLE person around me can understand or acknowledge the slightest glimpse of my true struggles....
Can ANY of the people around me even knows that I do struggle.....Moe important....do they even care.....
I, almost all the time, put on that "brave, happy face" and barely even metion one tiny bit of pain, more in passing if you will, like "Yeah my ___ is bothering me more today". But I minimize it like it's a faint headache.....which as we all know never is!! We all know the true pain it causes, but my fiance got "sick of hearing about it" so I've pretty much stopped that as well..... so whenever I have the really bad, devastating honestly, flare, those comments are even worse, to boot I get comments like "just deal with it", "I had really bad carpal tunnel syndrome I know exactly what you're feeling or worse" grr, or my personal most hated "you'll be okay just suck it up"...... all these and more......when I feel like SCREAMING IT'S NOT OKAY and IT NEVER WILL BE AGAIN!!!! And why can't you give me the SLIGHTEST bit of empathy or support?!?!
I know it can be frustrating to be the only person working full time, and that dishes/laundry gets backed up from time to time, but we have a cleaning service once a week to have the place clran, and I do the best I can with everything else so you don't have to after working all week.....I have literally been in that role but did ALL the cleaning as well.....I have total empathy however and fail to see where I deserve that kind of treatment, I even bring an income equivalent to a full time job at a bit over min wage......thank god it was approved because I NEEDED it!!
I just don't understand how someone can see someone else suffering as it am now, physically AND emotionally, but be so self absorbed to do absolutely NOTHING......
So if someone who's been with me for two long....can be this way towards me......
WHY would ANYONE ELSE want me?
I can barely get dressed right now without help ......
My daughter truly is the only thing keeping sane and stable....so if that's true.....what will I do once she's gone?

Thanks....I needed to get that all out.......

[CRPSsongbird]

Originally Posted by EnglishDave

Sorry songbird, but you cannot give up,

You even mentioned a good reason in your Post - your daughter. I doubt she sees you as a burden at all.

You just need to reassess what you are trying to do that is causing pain and difficulty, then slow down, time activity to co-incide with meds and really learn to accept the help that is offered you by family.

Try to spend more time explaining rationally your limitations. I know this is hard, I have to repeat myself to family most days.

Vent away all you want and need here, just know that this will pass.

Dave.

Part of the problem is it feels like my daughter is the only one who cares about helping me at all ....he's a trucker, when he is home he doesn't do a single thing other than his own laundry, and only his dirty work clothes at that.......
Anything more and he literally yells, shouts, because it should've been done before he got home, even if it were little by tiny little.....

[Wiix]

I hear ya. People get used to treating you a certain way. Once they start it's hard to stop. But if you don't make it so easy to be treated badly then they might rethink how they treat you. Don't DO so much for everyone. Take care of yourself! Let your daughter take some care with you. You took care of her while she was growing up, no?

[CRPSsongbird]

Originally Posted by Wiix

I hear ya. People get used to treating you a certain way. Once they start it's hard to stop. But if you don't make it so easy to be treated badly then they might rethink how they treat you. Don't DO so much for everyone. Take care of yourself! Let your daughter take some care with you. You took care of her while she was growing up, no?

Well she's still only almost 10yrs still so there'll be s lot of stuff ahe can't dobd without still lol .....as for him.....we'll see....

[Littlepaw]

Hello Songbird,

You have understandable stressors in your life. Anyone would get overwhelmed. Balancing self-care, relationship and raising a child challenges many perfectly healthy women. Having pain and limits on your ability on top of that takes tremendous grit to deal with day in day out. Pain is exhausting and has emotional consequences. Feeling unsupported in the battle would feel very lonely and upsetting indeed.

Are you seeing a therapist? I was so overwhelmed by my pain and loss that I felt much like you in that I just didn't want to go on any more. It took professional help to get out of that place. I am so glad I went. You need support right now. Family cannot be objective about our illness and give the type of support we need. It affects them too personally and frankly unless someone has experienced intense chronic pain they have no idea the effect it has ones life. There is tremendous benefit in having a professional dedicated only to you and your process to help cope with the losses and challenges of daily living.

Would your fiancé perhaps be willing to go to any sessions with you? For some, hearing or reading about the impact of a disease from an outside authority makes it more tangible. Having your experience minimized obviously doesn't help you or your sense of self worth. It takes courage and determination to live with CRPS. It would be wonderful for you if that were recognized and perhaps would help the dynamic in your relationship. Being yelled at is never, ever pleasant and is especially hard when it takes all you've got just to get through the day. I am so sorry that your relationship is not a support to you but a stress. Ugh.

We all understand the need to vent, have a cry and let down the brave front sometimes. Remember no matter how much it feels so at times you are not alone and you are not a burden. You are loved and have value. Your daughter knows this. Trust her wisdom.

Sending extra hugs and healing love,

[BioBased]

Songbird,

CRPS is a bizarre and gruesome affliction. No one really understands it or knows how to cure it. We, those who have it, must use whatever tools there are to help others understand. Have you heard of the Spoon Theory? You might want to share this with your family, it might help them understand and it might help you, too. Yes, we want to do more, but we are limited by pain and a lack of energy. It is a fact that we cannot change.

The best we can do is to simplify our lives so that there is less to care for and less work for everyone.

It won't hurt your daughter to do things around the house, in fact, in the future it will help her with time management and it will give her confidence that she can do household tasks with speed and proficiency. Since most of us don't have home help when we grow up and get jobs and our first apartment, it is an advantage to be skilled in the home arts.

I had a terrible conversation with a friend recently, who LOUDLY insisted that I did not have CRPS, because according to her I was "self-diagnosed." I was speechless, because no less than four doctors have diagnosed me, using not only the Budapest Criteria, but X-rays which showed severe patchy osteoporosis. She rambled on and on that I should see a neurologist in Florida, who as far as I know has no expertise in CRPS, but is a well-known author.

Another friend will not understand I can no longer visit her, 1., because I cannot walk down the long corridors to her apt and 2. , because I have to be in bed by 8:30pm.

I am doing my best to understand that they do not understand and it is hard.

My husband used to travel and it was up to me to do it all. He also had a chronic
pain problem for years so I could not rely on him for anything. Since CRPS happened to me after my husband stopped traveling and he was no longer in pain I was lucky, because he is in a position to help. Without him I would have needed considerable home health.

Your circumstances are challenging and you need to sit down with your family and brain storm, to figure out what changes you can make so that you can more gently live through this.

[Wiix]

Songbird,

You mention your "Fiance". Any chance that might end? It seems most of your problem stems with him. Please do not marry him unless you resolve these problems FIRST. Either make up your mind IF this is going to work for you or not. If you hold down a full time job why would you continue with this?

I'll tell you something. I was married twice, for a total of 20 years. And I was never so miserable and unhappy. I had pain and limitations too but since I shed myself of those two men, I have not had the emotional roller coaster I did when I was married. Sure for some marriage works but for some it's just combining more misery with even more misery.