Well, I finally shared more TN with my family. Every last detail of TN and all the side effects from the drugs. I guess I thought it might elicit some sympathy and understanding but I only got anger.
They are very angry because they thought I was suffering from severe depression and was choosing not to spend time with them. This has given them so much more perspective and they are very angry for not knowing sooner.
They'll get over it.
If anyone out there has not shared enough with their family - do it. They don't need you to run around complaining every day but they need to know when you are having a bad day and they need to know when you are having a good day so the family can make the most of it.
My wife made sure that all of the kids knew what was happening. Christmas eve is normally a big day for us. I was having a bad day. The kids all came, the party went on, (I stayed in my room). Before they left, they came and gave me a hug and a kiss and thanked me for having them over. They knew I was in pain and they knew there was nothing they could do to help accept let me know that if I needed them they were there. As the wife said, better they know it all up front then they will adjust and learn to live with it just like I will have to learn to live with it. The anger will pass, soon the help has just begun.
Just as I thought, the anger has subsided. Having a bad day today and they are actually waiting on me hand and foot! That won’t last, after all they ARE teenagers! At least I know they are trying to do what they can for me.
Having a good support system is a key component in dealing with our condition. I agree you need to share with all of those that you come in contact with on a regular basis. They need the information to know how to deal with it and help you. I haven’t come into contact with anyone that did not want to try to help me but it is up to me to let them know what I need and to educate them about TN.
Next to proper medical care, I would advocate family support as the most important element in a care programme. They are the ones who will see you at
your worst. They are the ones who you will bite the head off unfairly. They are
the ones who will suffer from the unseen consequences of TN. I know I could not
have made it through the last six years without the support and love of my
family, especially my wife who has to deal with my TN when it’s at its worst.
My advice to anyone who is diagnosed with TN is don't hide it from friends,
colleagues and most of all family because anyone of them might need to deal
with the consequences of a sudden attack. So better they know what's wrong with
you.
Another piece of advice I would offer is that for those of you who get periods of' remission', make the best of that time. Don't sit worrying about
the next attack. If it's coming, it'll come if you worry, it'll come if you
don't. In terms of pain, this has been my worst year resulting in two hospital
admissions. Despite this, I still remain positive. I still expect to wake up and the pain
will be gone forever. I view myself as a victim rather than someone who is ill.
Sorry, I'm starting to rant a bit now. Best wishes to everyone. Onward and
upward dear friends.