This is my first post. The reason I joined this group is because some days I just feel like giving up. That is not like me. I have so many things to live for, friends, family, my career of helping people with special needs, but some days life is just so painful, actually, most days. I'm very sensitive to pain medication, so I have virtually no pain relief. I want to know if there are others with chiari that have experienced the want to just give up. How do you deal with that? How do you come to terms with living the rest of your life in pain?
Yes...I've had that feeling ...recently, daily..and then I'll have a really good day..and I remember what it's like to feel "normal" and I am hopeful again. I haven't come to terms with it yet..I'm taking it minute by minute..and doing all I can to advocate for myself. It's not easy..and I do cry quite frequently...the lonely tears that come from being so misunderstood..even by those that really do want to understand. Chiari is a private hell...fortunately, we have boards like these to find a bit of soothing, cyber-shoulders to cry on. Keep your chin up (unless it hurts in that direction)..you are not alone.
I had to come to realize that I had to learn to live my life some different or alot different due to my symptoms and that was ok. I still have my down days. I know how it is to get really depressed on days where all you can do is sleep due to the pain. Learning to adapt to a differnt life style can be difficult. What gets me though the day is my faith the in the Lord.
Without depending on Jesus I could not get through the day.
I completely agree with you and it is a journey for sure. As mmrobinson said best I think it just needs to be done day by day as I am optimistic happy one day and then so low and have no motivation for anything. Do your best to find ways to reduce your pain physically and mentally even seeing a specialist to see what else can be done.
Absolutely, yes...I have. I was having horrible mood swings. I would laugh uncontrollably one minute, then the next I was crying hopelessly. Everyone tells you to stay positive, and keep your head up, but they have no idea what you are actually going through. I've learned to deal with the bad days, and hope for the good days, and take advantage of them when they come. And, as hard as it was for me to do, I actually asked my doctor for some help...while I was asking I was crying. He put me on a Anti Depressant. Hopefully just for a while till I come to grips with everything. Its only been a few days, and while I've had the down days, I haven't wanted to curl up in the corner and ball my eyes out. So don't be afraid to reach out and ask for help. Its OK to feel how you've been feeling, but don't give up, ever...because there is always HOPE. And the days I'm not so sure, I drink my coffee out of a coffee mug that has a pretty blue flower and the word hope on it, it just kind of reminds me I need to hope and have continued faith. Hang in there....we are all here if you need us!
I too can not take pain meds, even for migraine and after surgery. I only can tolerate Tylenol. I’m a very stubborn person and get angry and tell myself that this will not win, I will! If i have to I "fake it till’ I make it)you wouldnt believe how much this helps, because i think that your mind starts to believe it. I also vent, and that really seems to help.
I hope you find relief soon.
barb
I wrote about giving up in one of my blog posts:
http://www.chiarisupport.org/profiles/blogs/like-a-ghost
Having a chronic illness, especially an "invisible" one like Chiari, comes with a whole big bushel of problems. Some people handle them easily, some people handle them differently. There's no right or wrong way - there's only good days and bad days and us, trying to survive in the best way we know how.
Good luck, and know we're all willing to listen when the going gets rough.
Katrina W.