Dear Momlovetobake, I too am so sorry you are in so much pain. This illness is so devastating to not just us but our loved ones as well. I think (on behalf of your husband) he is very scared and is just hoping if he does not react to it, it will go away. I too was the leader of my pack, always in control, patient, encouraging, and a caretaker of many of my family members in thier time of need. But as you stated, it begins to deminish as we are simply not able to do and be that person anymore. I think the turning point for me was when I came out of my wheelchair and pinned my daughter up against a wall. They all just stood frozen as my son pried me off of her. I was shaking so bad, and we all started to cry. I was just dealing with so much physical pain, and she was just being a normal 16 year old (mouthy), but I snapped. I could have hurt her. That was when we all knew that something was severely wrong with mom. I have come a long way since that day, knowing I would never go there again. So Mom, scream if you need to scream, get counseling if you need to, learn meditation, take time out, find a quiet place to go to when you feel the need to take a break. I have a room that is my sanctuary, I go there three or four times a day. I have candles, a heating blanket, tapes, etc., to relieve the stress that this induces, and I always begin my quiet time with prayer.

It is the loss Mom, they miss the old you and they want you back. It is a lifestyle adjustment for the whole family, unfortunately, we get it first. Be patient with yourself and your husband. He will begin to understand as the fear withers and prayfully he will step up to the plate. As Loretta stated, print some articles out on the illness and the devastating effects that it causes, that was very helpful for my husband and he then began to explain things to the kids. Time is a great healer. God Bless you and your family, I will keep you in my prayers.

Jeanie

P.S. I am ashamed of that moment and have never told a soul. Don't allow your frustration to take you to that dark place.

Dear Momlovestobake,

It is late in the evening and I hope you have found some peace that you needed earlier in the day...

Before RSD, I was the one who planned it all...the outings, the shopping, the cooking, taking care of everyone...my children are grown and live elswhere, now, but I was still the one to try and resolved their issues with them...I still over see my 98 year old mother who lives independently but is still 'dependent'..

I work full time (gotta work) and literally fall on the couch as soon as i walk in the door, from exhaustion and pain..:eek:

For months now, I've had to relinquish many of the tasks/things I used to do..
write the bills, shop, cook, cleaning, etc, etc. I had to..The pain consumed all my energy....I no longer cook, but I put a healthy frozen entre in the microwave, or make a salad..or a sandwich for dinner ..my spouse does his own thing for dinner, etc.

We each do our own small loads of laundry..I do what I can with the chores....I no longer write the bills, which I had been doing for years...now my spouse has taken over that task..

My wish for you, Momlovestobake, it that somehow your household gets reorganized to lift the burden from you of all the responsiblity..It's too much for you..

My dear friend, please try and let go of the tasks and chores that are overwhelming you..eventually your family will adjust and they will, out of necessity, (such as if they want to eat..they'll have to pitch in with the cooking..if they want clean clothes..they will have to do their own laundry...)

You need to have some time and energy to deal with this monumental transition in your life, the emotions around it, and the rest that you need, and to dig deep and find ways to cope internally..

I hope you awake tomorrow somewhat regenerated, with some ideas on gradually how to adjust your household to your needs...
Sending hugs of support
Hope4thebest:hug:

Jeannie.......We've all had out moments. I hope that you are able to forgive yourself.



MLB..........My situation is different from yours in that my marriage was troubled long before y RSD. I always thought we'd be able to work on things when we got the chance.....we worked opposite shifts so we had little actual time together. Almost 6 years ago when my pain issues started, we suddenly had a lot more time together.....Let's just say now we are just biding our time untils the kids graduate. My husband has taken over cooking and shopping.....which would be a good thing, but he refuses to buy anything healthy or fresh fruit and veggies, etc.......so be careful what you ask for, they usually don't do it up to our standards !

My friend's situation sounds like yours. Her pain is so much worse because she is trying to do everything she used to. If she doesn't wash the dishes one day and asks her husband to do it, he'll say, "Well, you washed them yesterday" or "If your friends were coming over, you would have done them."

People can be stupid and not think before they speak

Finz, yes I have asked to be forgiven and have forgiven myself, thank you so much you have a kind heart.

I only shared, because this illness changed who I was. I am not a mean little person, heck I was the Kool-aid mom. Just because one is in pain is no reason to behave so irrational, and I knew that, I just lost control. I and my family had to find some coping skills and we worked together to accomplish that. That was many years ago, now my daughters will throw a joke out about it and they will laugh, and that is okay laughter is good for the heart. We need our family, especially our spouse to at least hear us. I searched the internet, on chronic pain and family, and found some wonderful articles and printed them out and still do at times, so we can all stay on the same page.

God Bless All,

Jeanie

Jeanie~

I appreciate you sharing that incident with us..I have even more respect for you if that was even possible. It shows what pain, constant pain and the unraveling life can do to someone..You shared a bit of your life that you had not shared with others before and I think that is wonderful and an honor... We are human and RSD really pushes our buttons... You are good my friend..just great!! Never be ashamed for handling things the way you did..I am sure you got your point across at the time...

Rest well .. sleep tight and see ya in the morning!!

Hugz Kathy:grouphug:

I have been dealing with my pain for such a long time. I try to not be a burden. I figure; "Who wants to hear me complain about how much I hurt?" So I suck it up like the good soldier we boys of the 1950's and 1960's were taught to do.

My brother's wife is dealing with a chronic pain issue and he often comments about how I seem to handle my "problems" better than her. Little does he know how much it is eating me up inside.

About once a month, I can't hold back any longer, though. I let loose with a really gully-washer. I will lie in bed and, between sobs, wail about how I want my real life back. I will cry about all of the physical things I can no longer do - things I used to be real good at like playing bass guitar, repairing automobiles, hiking and climbing, carpentry, home remodeling, landscaping, gardening, and baking. Boo-hoo. :(

These are the times that my wife is reminded that, even though I may appear to be functioning well and I am holding down a decent job, I really am not having a very happy life.

After about an hour on the pity-pot, I can pull myself together and I am okay. But letting loose like that is very therapeutic for me and, I think, my wife. She gets to hear all of the things I might otherwise keep bottled up for good appearances.

I understand your pain
 

Dear Mom, reading your post I could feel your frustration and of course i know your pain so well.

I dont know if you remember my post- but my husband walked out on me the day after our 12th anniversary with out a word,just abondoned me.

I have been terrifyied. That was the end of December.

But i have to tell you in one way it has been a huge relief. it was so so diffucult to pretend to be normal - the pain to make him a sandwich for lunch , I would have to carry the tray in to his den, the pain it caused me,

I have full body rsd pain. then the pain to try to keep looking nice the pain to try and keep the house nice

the additonal pain to try to cook dinner etc etc I think you know what i mean.

When we are in so much pain it is so diffucult to try to appear normal and keep up with minor daily schedules. It was for me.

But if I didnt I felt like a sloth.My husbands face when i was in bed for 4-5 hours in the middle of the day said it all.

I forced myself way beyond my ability and i would pay a huge price.

My husband traveled alot, Thank God, as soon as he would leave I would collaspe in bed and I would be there until he walked in the door again and I would begin to play the normal routine again in excrutiating pain.

I dont know if any of that helps but I do understand, for that reason I am so happy to be alone in an apartment.

I never thought I would say that ,I loved my husband a great dealand was devastated when he left me, but it was just too hard. too much pain. you are in my thoughts and prayers. dc
I was just reading this to check my spelling and was thinking how terrible this monster is that it makes being alone and losing someone you love so dearly a relief..its so horrible.

Hi I am sorry for everyone's battle here. I am not sure if this was mentioned cause I skimmed the replies but what about couples therapy? For me when someone says something or their actions are upsetting I try to tell them how I feel. Even if they don't change at least I don't keep it in and lets things build up where it becomes out of control. Sometimes too one just needs a good cry to get the emotions out. Feel better all

Bassman,

Wow, great post! Couldn't have said it any better (played bass in the "day," too)!