It used to be so easy to blog. Now I just sit and stare at the screen, trying my best to focus. I hate these drugs! They make me stupid. They caused me to lose my job. They took away my ability to drive. I keep thinking that there has to be a fix but what I've read about surgery doesn't seem encouraging, especially for type 2 TN. My Mom and Husband are supportive but I feel like the rest of my family is just rolling their eyes at me. Do they really think I would make myself a prisoner in my own home of my own accord? I send my husband out on the weekends without me while I sit at home rocking back and forth, it seems to be my only coping mechanism. I miss my friends. When I do get to go out, I look like an idiot with a handkerchief always wrapped around my forehead. I'm dreading the winter. While I used to love nothing more than making my house an ice box, with a fan always blowing in my face. I now can barely get anything out of my freezer. Cold has become my enemy. And there is no relief in sight. I truly understand why this is called the suicide disease. If I didn't have the best mother and husband out there I would have already ended it. They are the only things that keep me going. It's not fair! I'm still considered a newlywed....married just 2.5 years now. The first year was amazing. Going out with friends after work, spending our weekends tubing down rivers, seeing concerts, going to BBQ's and living it up. We needed more time.
Whine away GF. I am much older than you, and cold has not yet been a trigger. I play golf, competitive and for fun with my husband. I decided to go and just play. I take deep breaths when the pains hit and I have had the constant knawing so long I just go on. But the drugs are taking my life away. I don’t laugh anymore.
Wait, this is about you. Tomorrow may be the day that someone comes up with a cure. Don’t give up yet.
I am going to an upper cervical chiropractor on Monday. He says he can help this tremedously if not cure me. I will let you know. I’ll try anything. Be strong and ignore the people who don’t understand. How could anyone understand who hasn’t seen it firsthand or felt it. Remember, you have friends who know how bad you hurt and how bad the drugs make you feel. Reach out anytime.
((((((( hugs )))))))
I hear ya…
Not a good day here,
just know you’re not alone!
We have to have hope, distract ourselves as much as possible when we’re feeling so low.
Thinking of you
I'm sorry to hear you're going through this. It's great that you have your husband and mother, but it's extremely difficult not having close friends. Sometimes they can offer a fresh perspective that isn't blinded by motherhood or the fear of hurting a spouse's feelings. Like Candy said, whine all you want here. We understand.
O my goodness, I can only imagine what I would be like if I had got this when I was only married a couple of years. I get the same from family and as for friends well only one of them has come anywhere near me since I was diagnosed. You have so much ahead of you and I do hope that they sort your meds out so that you can have your life back as much as you can. I thought at the beginning my life and my career was over but it has got a little better-Small steps and I am determined to do what I can to get it back.Concerts are a tough one but I think you should look for unplugged concerts in small venues with loww lighting. Stars like Katie Melhua, Norah Jones, Sting do these. And some big names preview their tours or albums at small venues. I speak as a professional violinist who works with Rod Stewart, George Benson, Westlife, Celtic Thunder, Andrea Bocelli etc. I do not know as yet whether I can lead a 90 piece orchestra ever again as like you even small vibrations, and spot lights hurt me. Wearing ear phones in a recording studio again I cannot even think about, and that is a lot of my work,.. but I have had a great career thus far and will have to do what I can. You are young and I hope you can enjoy your life as much as you can in this situation and with your wonderful husband. I want to thank you for stopping me feeling sorry for myself and realising I am not alone in this. I am very grateful and wish you all the best.But do not give up on enjoying life, things can get better for you.Nx