[Karly1964]

I have sort of a problem....my Mom has normally been sort of unsympathetic in the past when I have had medical problems, she just seems to be able to deal with things better if she does not acknowledge the problem. She has been super good to me most of the time, but she cannot acknowledge some emotional pain and fear that we all share because of the death of her younger sister, my aunt at the age of 53 in 1999.....she was diagnosed if I can remember right dermomyolitis and polymyositis....what happened was she got pretty disabled and weak, she caught pneumonia because she asperated food at Christmas, she was coughing slightly on Christmas eve, in the hospital on Christmas day, on a resperator on the 25th, septic, then brain dead by her 54th birthday on the 27th. I don't say this to worry people it is just that every time my mom thinks of my diagnosis and all the medicines she doesn't want me to take them since she thinks that prednisone etc. contributed to my aunt's death. I keep much of my condition and how I feel secret from her because she gets so upset and fearful that the same thing will happen to me. I have designated my sister to be my medical representative since she is a nurse and not as fearful as mom, but it is taking a toll on me not to be able to talk about my feelings, symptoms and meds...my sister is available at times and my friend who I call from time to time but it is long distance so on ssd it is hard to pay phone bill. I also have a living will and have given my sister my wishes etc. and a will now as well. I am in no way ready to die and my health so far is fairly stable I just wanted things to be in place. Does anyone have any suggestions about how to rid myself of some of the stress of chronic pain etc. without freaking out my mom and family? Do support groups help anyone? Karly

 

[LolaLola]

Hello Karly,
I wish I knew what to suggest. You are very sensible doing a Living Will etc. I have only just got round to mine.
I don't have a Support Group where I live. I used to find when there was a Chronic Pain Group here,that being involved in that helped.
I don't know how you should deal with the fear, but from my own experience it can be a symptom of the illness rather than any failing on your part. I hope you get some relief from it soon.
x Lola

 

[sam101360]

Karly:

I am not sure if you live in the US, however if you do, many groups offer free or very inexpensive counseling. Christian Charities, Jewish community groups, State groups as well. It may pay to make a few calls and see what is available to you.

I have found a counselor to be very helpful in dealing with the stresses of a chronic illness. They have given me some skills which I use often to reduce stress and calm myself.

I am sorry I cannot offer more but I do hope this helps.

Stephanie

 

[onetay]

Karly,
As for your mom maybe a little at a time show or address something positive so she isn't so uneasy. Our biggest fears are misinformation,personal experiences,and of course the big one loosing someone we love. As for pain talk with your doctor there are some good pain meds out there that work (maybe not all the time but I take what I can get). If asked about the meds you could reply it is a mild pain pill for comfort that some days are a little harder than others. Your mom has a justified fear for you, but she sounds like she also wants to be there also.
Onetay

 

[Raglet]

I think one of the tasks of adulthood is coming to understand that parents have their own frailties, and although we might want to have total support and understanding from them this just aint going to happen.

You are very wise to seek understanding from where you are most likely to receive it, as I can see you are doing with your sister.

I think that it is a matter of building up a support system for yourself, while remembering of course that relationships are a two way thing and we all need to offer as well as take.

Counselling could be helpful - but often I think support groups can be a great thing because it offers the opportunity of developing supportive relationships with other people, which is the main thing you seem to need at the moment.

I do know how hard it is to deal with this stuff - I have a sister who leaves the room everytime I enter it, which is very sad. I think she just can't cope with my disability (we were always very close) because I can't think of any other reason for her to be suddenly behaving like this. It took me a long time to really believe that this was happening, but unfortunately it is and there is not really much I can do about it.

cheers

raglet