Is anyone tired of understanding the non-understanding?

Discussion in 'Fibromyalgia Main Forum' started by kerrymygirl, Feb 9, 2003.

  1. kerrymygirl

    kerrymygirl New Member

    I have been reading the message boards for awhile now and say that I have learned alot more and I have worked with more fm patients in couceling and work ups than I can count.I just plain lost it the other day. I do my best not to get depressed and not blame others. Also, find my place that maybe God gave me this DD, for some ungodly reason,little punn. Anywho, I have made excuses for the rudeness of docs,that have forgotten their oath and that we have so much to learn yet in med. field. I say well their under time limits, stress, we are complicated etc. My family who say`s they understand yet when my dad was dying and I went to take my turn in helping while taking care of someone here that I made a promise to and had no one but me, I was trying to do it all quite ill, thank God for meds at that time. I was going back and forth to Cleveland from fl. Also, mom had quad bypass at the time we found out about dad. Mom, is most demanding, dad was a trooper and would`nt trade 1 minute, but felt guilty that I had to take a break after 2 wks., not sure how I made it that long. For the first time my bro&sis got mad at me and were really hard on me. I stayed there longest at one time, we never had words before but my brother said, I don`t know what the hell is wrong with you. We were so close I helped raise him, his big problem is he had functions,like diner to go to. I could not have the strength to sit at diner if I wanted to or even dress to go out. He always seemed as if he tried to understand, there was much more said, once again I forgave and understood he was not used to helping others. My sis who is an oncology nurse,MA, was a little less harsh but did not understandd , just because others are ill, {It does not make me better!!!!!!!}Yet, she is so kind to her patient`s, plus a touch of fibro, not all the things I have,but she can go to Hawaii on a whim to relax or any place else. Her husband take`s good care her. I had to come back to a mess here and go through the whole hospice thing again,alone, no breaks after my dad who I adored died. All the time I made excuses for their stress, honest as can be I was the only one not to lose their temper and took alot of the verbal brunt. I am tired of people watching me and saying things outloud when I used a handicapped spot on bad days. I finally told one guy off, so to speak, I forgot one good retort
  2. hope4

    hope4 New Member

    If you continue at this rate it will cause you to be even more stressed and ill. I understand what you are saying about people that don't try to understand. Unfortunately, it tends to be our own family members that do not understand the most. I tried explaining things to my entire family, one at a time and I have 7 brothers and sisters. They all seemed to have responded well. A couple of years before I became ill my mother had a stroke and I was at that hospital every evening with her for 4 months until she came home. We alternated on staying the night with her and my dad; because he would not go home and wanted to stay with her. I was also working a full time job and I have my own family.I was burning the candle at both ends. I no longer work because of this disease and the havoc it rakes upon my body and mind. If my mom gets sick again I would not be able to do what I did 2 years ago, but I will do what I can. I just hope my brothers and sisters would understand. I'm so sorry that your brother and sister were not more understanding of your condition. But you just have to do what you can and not let them control how you feel about yourself. Only you know your limitations and only you can decide what you are able to do. When my father became ill recently, I let my sisters and brothers know that I was limited to what I could do, but I would do the best that I could. I also let my dad know this too. They were very understanding. At least if they did not like it, I never knew about it. We go through enough guilt ourselves because of our limitations, we don't need others judging us too.
    Let them know how they made you feel, I'm sure you can do this in a loving way that would not cause more problems. I can tell by your words that you are a peace maker, because of the way you try to understand their actions and you are the one that was wronged. I do the same thing too. That's probably why we are so sick.
    I'm so sorry that you lost your dad. I am very close to my father too we talk almost everyday. I can only imagine how you feel about losing him. I'm sure you have lots of cherished memories to reflect on. I hope this message will be encouraging for you. Your message helped me to see that I'm not alone, and we all have quite a bit more in common than we think.
  3. nje

    nje New Member

    I UNDERSTAND FULLY WHERE YOU`RE COMING FROM. I MOVED IN WITH MY MOM AND TOOK COMPLETE CARE OF HER WHEN SHE HAD THE LUNG DISEASE THAT FINALLY TOOK HER FROM ME. I WAS THERE TILL THE MOMENT SHE DRAWED HER LAST BREATH. I WILL NEVER EVER REGRET THAT I TOOK CARE OF HER,MY SISTER HELPED ON WEEKENDS,SO I COULD GET A LITTLE REST. BUT I TOOK THE BRUNT OF IT,IT WAS THE WORSE THING THAT HAS EVER HAPPENED TO ME,WATCHING MY BELOVED MOM DIE. I STARTED GETTING FIBRO,WHILE I WAS CARING FOR HER,I KNOW IT NOW,I JUST THOUGHT IT WAS TIREDNESS FROM CARING FOR HER THEN. NO MATTER I WOULD DO IT ALL OVER AGAIN. BUT MY BROTHERS AND SISTER,HUSBAND,SON,ALL JUST THOUGHT I WAS DEPRESSED BECAUSE I WAS TIRED AND ACHING ALL THE TIME,AFTER SHE HAD BEEN GONE FOR A YEAR,BUT I KNEW IT WASN`T DEPRESSION, I KNEW THERE WAS SOMETHING WRONG WITH ME,SO I BEGAN WITH THE TESTS, 1 RIGHT AFTER THE OTHER TO RULE OUT EVERYTHING ELSE,THEN I WAS DIAGNOSED WITH FIBRO BY MY RHEUMY. DO YOU KNOW THEY(MY FAMILY) JUST LOOKED AT ME LIKE I HAD PICKED A DISEASE OUT OF A BOOK AND MADE IT UP.OHHHHHHHHHH I CAN`T BEGIN TO TELL YOU HOW TIRED I AM OF UNDERSTANDING THE MISUNDERSTANDING PEOPLE,AND THE KILLER IS,MY SISTER UNDERSTANDS NOW,BETTER,BUT MY 2 HARD HEADED BROTHERS,ALL THEY CAN SAY IS,YOU`RE ON TOO MUCH MEDICINE,NO WONDER YOU`RE TIRED. THAT ABSOLUTELY SENDS ME IN TO A FRENZY EVER TIME THEY SAY IT.BUT I THINK THERE IS SOME HOPE YET,BECAUSE I FINALLY GOT APPROVED FOR DISABILITY AFTER 18 MONTHS, 6 MONTHS ON MY OWN,THEN A YEAR AFTER I HIRED AN ATTORNEY. WHEN I HEARD THE NEWS I TOLD ALL OF THEM,WELL THEY DON`T GIVE DISABILITY TO PEOPLE WHO ARE NOT SICK AND IS ABLE TO WORK,SO NOW WHAT DO YOU THINK? THEY HADN`T ANSWERED ME YET,THEY CAN`T STAND TO BE WRONG.MY MAIN PROBLEM NOW IS GETTING MY HUSBAND TO HELP IN THE HOUSE. I KNOW MY LIMITATIONS, BY TRIAL AND ERROR,WHEN I OVERDO IT, I PAY FOR IT FOR DAYS, SO I PACE MYSELF ,AND DO WHAT I CAN WHEN I CAN. I TRY TO GET HIM TO VACUUM,OR ANYTHING, HE LOOKS AT ME LIKE, (YOU MUST BE KIDDING)I WORK,I CAN`T DO NO HOUSEWORK,I KNOW THATS WHAT HE THINKS ANYWAY.WELL MY HOUSE HAS NEVER BEEN IN NEED OF A GOOD CLEANING LIKE IT DOES NOW,BUT YOU KNOW WHAT,THIS DIRTY HOUSE WILL BE HERE WHEN I`M DEAD AND GONE,SO IF HE CAN STAND IT,SO CAN I. I`M LOOKING OUT FOR MYSELF,BECAUSE IF I DON`T NOBODY ELSE WILL. THEY WOULD HAVE TO WALK 1 DAY IN MY SHOES TO EVEN HALF-WAY UNDERSTAND WHAT I FEEL,PHYSICALLY AND EMOTIONALLY. I SEE A PSYCHIATRIST,AND THERAPIST EVERY MONTH,AND HAVE BEEN NOW GOING ON 6 YEARS,EVER SINCE MY DAD COMMITED SUICIDE IN 1997. THAT ,(MY NERVES) AND FIBRO IS WHAT I GOT MY DISABILITY ON.THEN I TOOK CARE OF MY MOM TILL SHE DIED,IT ALL JUST PLAYS HAVOC WITH MY NERVES.WHEN I`M IN PAIN,THAT REALLY GETS MY NERVES GOING. WELL I`VE TALKED TOO MUCH,BUT I HOPE WHAT I SAID MIGHT HELP YOU. NJE
  4. bluebirder

    bluebirder New Member

    Understand someone else not understanding??? I don't even understand myself yet. I only know I chronically hurt. Sometimes I feel better but it never goes all the way away. When it is not bad I ignore it and do more than I should and it is followed by days I am not so good.I am so angry I don't know what to do. Hubby mom is 89 years old. His sister is Manic Depressant after a bad Navy experience.

    I am almost out of medications they gave me this last time when they diagnosed it as Fibromyalgia. Hubby cut me off from finances by taking the check book and joint credit card away and made me cut up the card from my own account that he wasn't on. I can't refil the prescriptions now. I am not working outside the home now and my husband thinks I am being punished by God and he is suffering unjustly with me. I am not sure what is going on.

    All I can do is hope and pray, knowing God will help me through.I worry about the day his mom dies and we have to figure out what to do about his sister. That is if he doesn't kick me out first.Sometimes I think he is trying to purposly make my life so miserable I will leave. He has turned on our 22 year son. Puts us both down and demands $400 minimum rent monthly from my son.My son did the first $400 on my credit card balance but told his dad he can't afford that every month.He had to drop his college class to pay that. And he is looking for a place to move to.

    My girlfriend wants me to stay with her 5 year old the next three mornings..Hubby will drop me off tonight to stay there instead of letting me drive his car. They want me to go on the 20th to Florida and stay with them at the time share condo. That way they can go out by themselves when they want to. So instead of getting stuff done here I will be out of his way.But he refuses to let me have any money for the trip.

    Ah, there is a lot I don't understand. This illness, his attitude toward me, toward his sister etc. Why haven't I had the backbone for the last 27 years to keep the situation from getting to this point? Why others don't understand that I do need medical care and that it isn't my fault I am always in discomfort.