Understand who we were. Then after figuring out who we are, letting go of who we were is a good beginning. Embracing the NEW us. Accepting us as a child with lots to learn. Having the support of family to help.
Who am I? We all have labels.
I was an educator in management and loved it. I got this job because of being professional and woking hard even tho I didn’t have the degree that was reqired. I got it becasue of my “name”. I was an author, a public speaker. I loved working with people.
I was a mom, love keeping house, having company, etc… and had lots of friends over.
THAT WAS MY IDENTITY? CATHY CARLILE, Rex and Odessa’s child. That was a priviledge. I was married to a great man and had two cute children. I was Chip’s mother. I was Mandy’s mom, I was Chip’s mom, I was Heidi’s owner (dog), I am Charles wife, These came with roles that most of the tme I liked.
5 months after the accident. Smiling, yet if only my family knew or believed what I was going through,they would be shocked. I felt obligated to hide it as much as I could. They cared – I think they did, but it was lost on “them”. They didn’t want to communicate.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Who Who are you now? What can you do and what can you not do.
Accident, March 12, 2001 , 3:15pm
TBI (Traumatic brain injury), Dystonia (PAINFUL), Periphial Neuropathy (legs, feet, arms), (PAINFUL), CHRONIC PAIN, (PAINFUL)
RSD/CRPS (google McGill Scale) (VERY PAINFUL), Fibromyalgia (PAINFUL), Virus’ that were dormant came back in the neruological area (weakest link?): HHV6 (some call it the “cold sore” virus), Epstein Barr, CFS (Chronic Fatigue Syndrome Syndrome.)
These all cause other effects that are either painful, or inward a concern, outwardly I may or may not show, now speak of except to a few friends who are truly interested. (such as lose of hair, which was an emotional issue (I do not like how I look – it makes me look bigger!) , seizures/TIA’s, skin hypersensitivity, noise overload, cognitive dysfunction often mistaken for Alz. I am tested because of my family history ). I have a dr. who treats successfully.
My 15 year old daughter still needed me. I tried to be home when she was home, but now… I could do nothing but lay on the couch. I
couldn’t understand her, and I hope I taught her how to laugh her way through trials. And to pray. Because I wasn’t aware of what I said, and am seeing it in my journals, I most likely ruined that too. We were also close, and she shared what was on her minda lot of the time. We went places together and it was fun… yet now it stopped. It wasn’t her fault, tho children seem to take on that burden. It was the fault of the 16 year old who was irresponsible. These are the years I grieve for… as things got worse, she got further from me. Someday I hope she will come back.
The frustration comes from trying to figure out WHAT I can do, and then realizing I can not do it. It takes all my time instead of the usual quick few minutes. I have gone through hobbies I like, and have found something – painting, so will try that even tho I’m not a painter! We travel and my husband makes a bed in the car, or we cruise. There is a pain crisis the first few days, but they are not as bad after 12 years. It is hard to sit at home and I do not process to put things up, even in the kitchen. I don’t know how to cook, I try, but I’m exhausted and can’t finish.
I wonder if you will believe something so stupid? How long does it take you to write an email? Just a quick simple email? 5 minutes? 10 minutes? 20 minutes? (that’s putting way to much in to it). It takes me many times 1/2 day. See? I told you that you would NOT believe it.
Because of this, I FEEL I am in trouble most of the time. Very little positive feedback is given from immediate family, and they have made their feelings known that I create more problems by trying to do things. “Dad has to clean up after you and other duties, plus work” (sounds like young mom, right? lol) I do all I can to be a good “patient” and he has told me he appreciates that.
I have grandchildren and I want some memories I would have normally done, but can’t. When trying – such as at TG, 2014, we got 3 large condo’s in the Hill Country of Texas. All the grandchildren stayed with us (except the baby). I wanted things to be nice – pretty paper plates, little activities to do with the children to teach thankfulness, etc…. I was berated on these things because “it left me tired and everyone was tired”. All these things were done BEFORE we ever arrived. I had TG taken away because of not liking my pies and dressing, and a confrontation took place with the question asked my husband “do you like MY pies better or HER’s (mine)? It became more of an issue than enjoyable, as it was all about food, spices, etc… instead of being together and enjoying who brought what and being thankful. The kids were not involved much as it wasn’t about memories for them.
I want to change that. I don’t know what my future holds. The little game of pinning a tail to the turkey with something you were thankful for, was made into a laborious thing by my grand children’s parents. It was “silly and stupid”. The few I did with the smaller children was something enjoyable. “It was not called for as it was just more thing for me to worry about”. I wasn’t worried, I wanted to make sure we could do it through out the days. And it does teach them little things to be thankful for – family, etc.. it IS Thanksgiving, after all.
The best day of that TG was when the two older grandchildren and I went to the crafty town and had a blast eating and acting silly – having fun. Then home to act however I was supposed to act, which I haven’t figured out yet.
My husband did speak up once, but he isn’t aware of some conversations I’ve had and the struggle I have of no one understanding TBI and Terrible pain. “Get a hobby, don’t get a hobby, it’s too much trouble for Dad and you”. I stay confused on what to do around them or what to say. They want the “old mom back who is confident and has self esteem.” So do I, but pushing one down isn’t the way it’s done. I can’t seem to get that across. Because of some lack of knowledge, there is no knowledge of what is wrong and why things are done the way they are. Yet, there is a double standard.
This brings me more grief, more tears, and at times, ready to give up. I love my grandchildren so much and they are the joy of my days. Whatever I do, I want to do and am willing for the consequences of pain. They are worth that if it is at all possible. Sometimes it is not. ALL young families are busy with their homes, children, work and life. I do NOT hold them responsible for my happiness nor doing things that make me happy but they aren’t happy. All I am asking for is respect and knowlege of what I am fighting and not give advice that is in every book of “WHAT NOT TO DO TO SOMEONE WITH….” They are growing up, so things will get better. I did not ask to be this way. I took care of myself so that I would not be a burden or be someone ill. This was not planned, and it is a great grief to me. It is as much (or more) of a grief to me, as it is to them. The older ones are wanting to help more when they know there is a “test”, etc. Oh, what a privilege for both of us…. the joy of getting closer. Mine had to stop going to their grandparents – the lack of help was becoming to much. I wasn’t told that specifically… but I understood what the problem was. To have children who WANT to do is wonderful… so why squelch that?
We laugh and say “my husband is the wife and I am the husband”. (if you get my meaning) He does a lot, and I do all I can to help. We have help, but it isn’t an easy life for him, as we can not do much as we used to do. I feel bad, although he doesn’t make me feel this way.
Most husbands have some down time…. his is at midnight. It may take me an hour to do one email, or more hours, if it is long. The few things I get done would take someone a couple of minutes – an hour or so. It appears I do nothing, which that’s about right.
Some days, especially after a big weekend (mentally or physically), I am a shell.
We want to communicate, but when he gets home, I end up doing things because I can do them better when he is here, although he doesn’t have to help.
He doesn’t seem able to communicate, and part of this, I’m sure is trauma, lack of support from those in his family that are concerned with other family members and have no idea he is sinking at times. He doesn’t say much, as he’s learned he will get turned down. (I learned that years ago). We have to pay for it, which is fine. I’m thankful we can do that, and I’m thankful we can help others, as that brings a good feeling.
I love to help another in a way I can. (another thing I get in trouble for). Mostly, it is because they are not aware of what I’m doing – it may be more of a support by being there, etc… That was another big issue at TG…. I go to Florida alot. They were my “adopted family” although he was my older cousin. They were like my parents who had died. Now, he has died, so her and I have a very close “mother/daughter” relationship. This is “misunderstood” as going to help and getting sick again. She is 80, very healthy, but she is grieving, and I do help as much as possible. But we are aware of my limitations. We NEED each other. This is not looked at in this way.
Other pain/chronic illness people need help at times. We see it and know that they may not receive what they need. After waiting, then we ask if we can help. In the pain community, it is usually those who understand, helping those who are in need. Instead of downing us and finding fault, energy could be spent in helping. 10 minutes is like gold when it comes in the form of help. But, I would rather have peace, and a loving family, and that is what I strive for. I believe we could do it IF the family was educated.
Doctors speak of the answers to many questions of illness is support. But a solution is never given, as many are not aware there is NO support and we are not on a doctor’s salary.
YOU CAN GO BACK TO MENU AND SEE THE GROCERY LIST OF WHAT I AM DEALING WITH.
My goal is to keep focused and be a good wife, and a good mother. I do not want to be ruled by my children regarding my life’s goals, as they rarely see me, and when they do, I am happy. I’m happy because I am with them, not because I feel good. Sometimes being happy is confused with feeling better. On bad days, I may sit and do nothing. I struggle to be what I should be, but, I’ve learned I can’t.
Ironically, I have many young mom’s and their kids who beg to come see me (us), and have some that call me Nana too. They seem to think I’m doing fine and have always been kind in complimenting me. This goes a long way in feeling emotionally good.
I understand how necessary this is and although my children may not do all I would do, they still deserve my appreciation and pats on the back for their hard work and trying to make a good family.
I can’t figure out why I seem to be the black sheep. But, I do know that TBI can cause this and we are clueless. Instead of kindly sitting down and letting me know what I’m doing, it’s not common. I do not want bad habits and have asked them to help me.
I wish we could have the very close family we were…. they still talk to us, but there isn’t much interest in what we are going through. While that is normal to an extent – parents don’t tell their kids everything, as the child needs a parent they can go to without feeling they are being a burden for advice. It’s a difficult decision…. when do you involve them? I suppose when they are interested.
The MAIN Patriarch with his two coming up behind him and that a voice. If less criticism was spoken and more encouragement given, then there would be no sacrifice given that was in vain. We never realize what our parents did to help us, yet we can’t be held accountable if it wasn’t wisely used. Now grown, there is enough wisdom in this family to have helpful family meetings.
Some how, we have a very critical family and this is a lack of wanting to understand and have knowledge. If they ever saw the man who gave so much, sit with his head bowed in distress, knowing he can’t ask those he thought he could….. it is an abomination to not only watch, but to understand this is not “honoring your parents”. I don’t deserve this, it has been clear, but there is one how does. This man expects nothing, and gets what he expects. We come in second, and we are trying to make peace with that. Our worry is if I died, the grief felt can never be telt. The grief is uncomprehendable and hope it is something that others never have to bear. All because of me. My lacks can’t be tolerated, and it affects everyone. I feel wonderful about that!
Teach others, especially if is in invisible. Help them understand. Advocacy is what that’s called and I love it. It’s not about me, it’s about others who are in silence. To make aware of those around each of us who may need us. It is beautiful to see a whole family become an advocate and join hands as one. And it’s sad when this doesn’t happen, and the person is putting on an act that will leave her crying because of emotions.
I do advocacy. I can’t stand to see another suffer, no matter how small or not. Pain is Pain. ‘IN SUFFERING, AN ADVOCATE IS BORN’. There is a lot of talking directly to the White House, as shocked as I can be. 10 are read a day by the president. A petition was sent off and it appears we have a chance to change something’s. I wrote (as much as I could) of my story with video’s etc…. and it was used to teach all in the pain clinics office and all doctors, PA, etc…. I was humbled. Change comes slowly, but if you can get to the top (Linked In) etc… then you will make changes faster. I’m shocked when I get one of the doctors who want to link in with me. WOW….. maybe it’s working.
I just finished a survey, one that already has shocked a few doctors. They don’t ask the questions correctly, and if you don’t have an “expert” (someone with the problem who knows first hand), then a convention or any function is not complete. I was shocked when folks agreed with me.
When doctors saw one in 15 thought about suicide and some thought and almost cried and some cried… WHY? No support (the feeling of no one cares). The hopelessness of knowing this is your life. It’s not like a diagnosis that all understand and will take turns helping. It’s the worst suffering just like Cancer, but there are no visits. For a while, I had one person bringing food, one person driving 3 hours RT once a week to help, and someone who worked and when she could, would being things and visit before work. I fired them. Yes, you heard me right – I fired them. They were working themselves to the bone, my needs were great. Although a lot of hit did help Charles. But we couldn’t stand to have them be the ones that sacrificed so much, even their health, to help us and drive so far. We lied. We said we were fine and could do it. My friend knew I was lying, but she came less than once a week.
“Everyone is fighting a battle, but most of the time you wouldn’t know it”. How true. To think that at times you have sat beside someone who is so ill, they can’t imagine going on. Sometimes sitting beside someone who has no use for living and made phone calls, and no one home, or to busy. We do NOT want your attention. We want your time when you have it because YOU WANT TO GIVE IT. It’s so wonderful when someone comes and irons two shirts that are tee shirts (well, I forgot to get them out of the dryer quick enough). Those two shirts have been hanging for weeks – or many months. There is no time. There is no strength.
We choose to be happy or choose to be unhappy. Do it for yourself – Choose what you want, because actually I discovered that no one realizes what has happened. Don’t disappoint yourself.
You loose a lot. Not weight – most of the time. You lose relationships. Every kind of a relationship, you lose. Period. Doctors do all these studies and have all these ideas that are laughable at times. But they THINK they are asking the right people, but people don’t always trust, so they are very careful what they say. I’m careful if I’m filling out something. Most of those studies are not from the heart…. you can tell. Some are, and they are wonderful. I’ll tell you a secret…. if you know someone with ANY kind of chronic illness – pain, etc… brings loneliness. I guarantee, they have thought of taking their life, but family has stopped them when they think about it. I guarantee they feel they are not loved, but tolerated. Rarely do we hear – you are so exceptional, I know you aren’t feeling well, but you do things that I can’t imagine. (that is better than any pill). Our life is boring. Boring breeds more “boring”. No matter what – their marriage is facing difficulties that will never be spoken. Unless they are the 75% that get divorced. They feel their spiritual life is gone down the tubes. They are just a bump on a log. And churches are the worst place to get help. That’s another sad point.
HOW in this world did they get this idea? You, my friends and relatives. My studies show that almost 1/2 of emotional trauma (and we are full of it) comes from doctors and staff. The other almost 1/2 of emotional trauma comes from relatives and friends. The TWO important groups of people in our life. WHY? We are not allowed to talk, no one believes us. I have written about this in other places because it goes both ways. Studies show that when one is able to talk about the trauma, it is greatly lessened. NO ONE WANTS TO TALK and we don’t want to spend money to talk. After something bad has happened, and the attitudes that are shown, soon trauma begins. If it’s not taken are of, then the trauma is almost impossible to get past. It takes lots and lots of help.
With this, I’ll say….. IT ANGER’S ME TO REALIZE YEARS AGO IF I HAD SOMEONE TO TALK TO, AND IF MY FAMILY WOULD’VE SHOW AN INTEREST TO UNDERSTAND WHY I DID WHAT I DID, AND ACCEPT ME AS ME AND NOT ‘BROKEN’….. MY TRAUMA WOULD BE SO MUCH LESS. I can talk about some of it, but the deep deep stuff…. has only great tears. Tears are still good, so have a good cry.
The last breakdown I had (which is common in others) left me with seizures back again. Crying caused them to come back along with other things. Someday I will explode. I’ll apologize up front for the mess.
How do you feel about this? Have you had great support and been able to focus on healing not on household issues? Have you done something to make things better? Tell us your story here on PM’s…. they are great to know. We all have friends… we just don’t know who they are!