Hi guys!
As I wrote in other post, I am alone, in the literally sense of the word, no emotional help from nobody.. These is real cruel and sad at the same time.
We don´t know the time we are going to spend in this life, but I wouldn´t let this world without living any good experience as have the chance to share experiences and words with really good people, and who knows, maybe to meet face to face... with time..
I need to feel that not all in this world is bullshit (sorry for my honesty).
In spite of living with pain, see that the doctors here where I live don´t matter about the pattient (I wrote an email to him last monday and I still don´t receive an answer... I feel really angry and upset, but here in the region os Spain where I live is the typical situation...
Thanks, as always, to read my lines.
Hugges!
Lou, I know a small bit about being lonely but not what you experience. A friend with fibromyalgia lives alone with his pain. We met through a chronic pain support group. The doctors had given up on us as they did not understand what we were going through. The group looked for options. We tried all kinds of alternative treatments. Our focus was on pain management without drugs.
The area doctors paid our sponsor to close our group down. They wanted their own group. After 6 months they realize they could not profit from others pain as they had planned. We continued phone support for a decade until I moved out of the area. 30 years later some members still call to talk during tough times.
Find a local support group that you can meet with. Chronic pain, Lupus or whatever. If you can not find one, start one. The key to any good support group is...Helping you, Helps me. Looking for answers for someone else often helps you to find your own answers.
Stay with this group also to help others and yourself. Remember that everyone is different and what works for one person, may not work for another.
Most of us are open to private messages.
It´s a beatiful idea the creation of support groups. I supposed that in your country this kind of inniciatives are possible, where I live, it is an utopia.
Maybe, people the people in Galicia, this part of Spain is quite "special". The last year I was in the Sjögren association, that is located in Madrid (550 km far away).
The few activities offered by the association took place mainly in Madrid, and was impossible to took contact with other people with the same ilness in the country...
I think that maybe the personal circunstances and the spanish culture don´t match with me in spite of my genes are from here...
However, I feel more confortable with other cultures, more open mind in the aspect to help people in the same situation, practice empathy and to be a good friend as I can, but I hope that the friendship should be bidirectional.
I am thinking on moving.....
And about the doctor... no more comments....
Thanks a lot!
Hugges!
Lou,
Is it possible for you to create your own support group? I did where I live. I had previously run a support group for adoption many years before. But no one really told me what to do, I just
thought about what I would want out of a support group and created it.
I am happy to help you via private email if you are interested in starting one. It is not hard. I thought I might find one or two people with Sjogren's who would come to my group. I now have over hundred people on my membership list. I have anywhere from 15 - 50 people at each meeting.
Let me know if you have any interest, I am happy to help.
Take Care.
SjoDry
Hi SjoDry:
thanks a lot for your reply and suggest, but in this moment of my life I am not motivate to create a help group. I spent some energy when I was part of the spain sjogren assoication, in spite of the office is in Madrid. I tried that people knew that this dissease exist!
I have written people where I live is quite rare, so I don´t want to implicate more with them.
Finally I hope I will move to another place... but I don´t have clear about the final destination....
Lou