Isolation

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Sat, July 14, 2007

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Sooner or later the call was going to come, and tonight I got the call. Stacy is in San Francisco, I am in Atlanta, her pain is out of control and there is nothing I can do to help. She worries that her new love will not understand, and he will be frightened by the fact that she needs to go to the ER. It breaks my heart that I can't be there to help. Being at the other end of a phone line just isn't the same as being at the other end of the house. This whole chronic pain / TMJ disorder thing is so **** frustrating.

Setbacks come when you least expect them, and we find ourselves wondering when the next one is going to happen. I guess that is why it is so important to live hour by hour...day by day...week by week. This is such a wonderful place to vent. Thank you all for listening. I am sure that by now my friends are a little sick of hearing about sickness. So, I need to talk about isolation.

Chronic pain is very sneaky, and if you are not careful, it will take over your life and leave you with a feeling of isolation. In the beginning friends rally around you with offers of support and assistance. It is so important that you accept these offers, because if you don't, eventually they will stop. As I have stated before, Stacy has had numerous surgeries. With each one, people came forward to offer help, which I rejected because I didn't want to burden anyone. I also turned down invitations to socialize. As a result my friends and family went on with their lives thinking that everything was fine with mine. The more I rejected them, the more isolated I felt. I used to play trivia once a week at a local pub with some former co-workers, I went last week for the first time in months. I was so amazed at how happy they were to see me, and how good it felt to be there. Such a small thing, but it meant so much. So here is the deal.....YOU have to make the effort, take the time, and let others know that they are needed.

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Nancy

7/17/07 12:14pm

Candy, I don't know the treatment you have had in the past but I'd like to tell you of the treatment I had. My TMJ was so very painful when I was referred to an oral surgeon. He eventually ordered tests that found my cartilage was displaced in my jaw and I had surgery to replace that cartilage. I am now 23 years past the first surgery and 15 years past the second and am mostly pain free. I went from having horrible pain that caused me not to be able to eat to now being able to live a normal life. I really recommend seeing an oral surgeon that has taken care of TMJ problems. It is difficult to find but worth the search. If you would be interested I'd give you the name of the surgeon I went to.

babs17

7/29/07 12:45pm

It's all so true. I'm very isolated right now, and finally just told a friend about it the other day...and she said that she knew it, but didn't want to say anything to upset me. It's amazing how when you want to accomplish the feeling of Independence...but instead you accomplish the feeling of Isolation. I also cannot share my feelings....I literally stop crying as soon as i see or hear someone around me. I wish i could just open myself up....ther is so much inside that it came to surface with SHINGLES a few days ago. That;s how i knew that my body could no longer handle my thoughts. FYI....been at home with back injury and post surgery for 1 1/2 yrs. Lost everything.

Candy Franks

7/29/07 7:55pm

Babs.....you have taken the first step by opening up to your friend. What happens now is up to you. Let your friend know that you need her. You will be pleasantly surprised at her response. I remember when I was diagnosed with breast cancer I hid my feelings from everyone, including my family. I thought I was doing them a favor, and it backfired, I found myself isolated and depressed. It wasn't until much later that they told me how much they wanted to help, but had no idea how to approach me. For some reason I had a need to appear strong, because that is how I believed others perceived me. Wow, what a mistake. So, start with your friend...let her in, cry, vent, let her see your frustration. It is a beginning. Good luck, keep me posted on how you are doing

Lynne

8/ 6/07 6:11pm

My daughter (age 20) has numerous chronic illnesses that require a lot of surgeries and hospital stays. When she is in the hospital, I stay there with her to advocate for her. After about 3 weeks I am at my mental maximum. That is when I have to go home and allow myself to recover. Luckily, she hasn't had to stay there longer than 3 weeks so far.

As the main caretaker of a person who has chronic illness and pain, I have found myself isolated too. I feel totally out of the loop in so many ways. I didn't realize how much so until I went to Bunco and didn't know what everyone was talking about. I've always been very independent and have found it hard to accept help from friends. I always felt guilty for putting the burdeon of my problems on them. Some have stopped offering and others continue to offer now and then. I am trying very hard to accept some of the offers and learn how to be okay with it.

Some people ask what they can do to help. I do not have an answer to that question. I don't know what I need until I need it. Sometimes I've asked for help and been turned down. That stinks.

Everyone comments on how strong I am when dealing with all of this. When actually, I'm not all that strong. They just see me when I've got it together for the moment or I'm in crisis mode.

I know I need to let down and have a good cry but there is never an opportunity to do that. It seems like I have to schedule it and then it doesn't come. There is always something or someone needing my attention.

My daughter is such a sweet person and it breaks my heart to see her in such pain right now.

~Lynne

Karen J

8/10/07 3:29pm

I hear you, Lynne, although I'm not the caregiver but the patient. My mother raised us to think that showing pain or asking for help showed weakness in our character. Does that sound familiar? I was born in 1948 and that was just the way things were back then. So I learned early to slap a smile on my face no matter how I feel. Part of that is because most people really don't want to hear bad things. And I don't whine but now know to keep my pain to myself as much as I can.

My husband feels helpless and useless and it hurts me more, and makes me feel more guilty, that he has to go through that sincle most of my family members turn a deaf ear. Then he gets frustrated too. I'll bet you feel that way also. He has told me not to feel bad when he breaks and cries, which is when I become the caregiver. I guess the best thing to say works on both ends: Take care of yourself or you won't be able to take care of anyone else.

I think it takes a while to become accustomed to saying yes to offers of help or even ask other family members or close friends for help when you need it. Especially when you finally get the courage to ask and get a no answer. Maybe it's bad timing, who knows?

Sadly, my family has never offered any kind of help which I have prayed that they would for about 17 years now.

It sounded to me that you have people who probably feel like they want to help you even if it's in a small way, so, if I were you, I'd accept help whenever it's offered. This will help you and also make the giver feel good that they could at least do something.

I have a feeling you're the oldest child, or at least the oldest girl, in your family. I am and I think it's harder still because we have been taught to take care of our brothers and sisters since we were small. We grow up being very independent but have the softer side of nurture in us. You have every right to be cared for also. And you don't have to be availabe every time. Sometimes it's just not humanly possible.

In closing, I want to congratulate you and send you many blessings for being your daughter's advocate. People in chronic pain really aren't up to the task although I've tried. It seems people listen to my husband talking about what I've been going through rather than listen to me. And that is kind of strange since I'm my mother's legal guardian (She has Alzeimer's.) and have had to go to bat for her numerous times. She too is in and out of the hospital at least 3 times a year and one of them is always, always Christmas time.

Take care of yourself too, please, so you can be there for your daughter in the worst scenarios. Believe me she'll be happier about it too!

Best wishes and prayers,

Karen

Isolation

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