Remember that there are many ways of dealing with our different illnesses. Each one of us needs to find out what we need and then do it. It's really all about getting in touch with yourself. You can't heal by following other people.
I had to find a way to help me lower the stress level of the issues I'm dealing with and find a moments peace. It began as a project restoration....the new photo.
There is a big smile here...not driving yet but I have a circular driveway....I can't drive on the road currently.
Never quit or give up, find your peace no matter what you are dealing with....Seek and you will find!
When the sleep attacks come do you ever try to just push through them maybe by drinking lots of coffee. I still haven't really learned "ok" go take a nap now...very well yet...If I don't lay down and just push on I'm about 25% "there" mentally... I never drive unless I'm a 100% with it, which is not very often....I never drive far. One day I was feeling alright and rode the motorcycle to get a hair cut. It started to hit me in the chair feeling sleepy. I didn't know what to do so went out and sat on the curb by my bike. Ended up resting there and being able to ride home awhile later. If I had a car with me I would have taken a nap. I thought about putting my helmet on and laying on the grass but figured some one would think I was dead or just wake me up to check. lol!
When I have bad symptoms or stress, I have to lay down, I know it's difficult to feel like you are cut off to the world. I guess I have just called a truce with my disorders. A Pain Mgmt. Psychologist once told me I had to allow my pain to become part of me. I know I must have looked at her like she had three heads. It took me several years to get to a point where I understood. I have also learned if I push through I get much worse and it takes longer to recover. Do you have family or friends that can drive you?? I get cabin fever after being in my home for several days.
Thank you for the encouragement. It's been difficult these past 14 months, the number of issues. Trying to tell myself your not "that" ill. I've been cut back to about 25% of what I could do 2 years ago. I've always tried to make the best of difficult situations that I've gone through in life. But that is not working now. Recently I wrote a note to my doctor not because of her (but the other doctors comments about being , clean, well dressed, able to speak intelligently, etc.) - those comments were driving me crazy because I'm hanging on by my fingernails to not let everything fall apart in my life. Yes it's true, Clean clothes, I can cook 2 meals a day, do the laundry - but I never know when I have to lay down, am exhausted, lose things, forget what I'm doing... I used to be able to read 6-8 books at a time, write and do photography.
Cabin fever: it's real, my rides are sporadic, I never know when I'll get out. Thinking about spending another winter in the house alone makes me crazy. Waiting on SSDI appeal process.
I did have a nice weekend, spent a few moments on that 25 year old car...my counselor said it's good for me, I can;t live 24/7 in this storm, that using another part of my brain "to take time out" is very good for me. The narcolepsy diagnosis sort of was the last straw for me. Not being able to count on ever getting "restful sleep is a constant stress.
What you are saying is very timely, I'm realizing I can just put on a "good face" all the time, I have to relax and embrace how things really are.
I appreciate your thoughts and comments, you certainly know what this is all about. I like the idea of calling a "truce", maybe that is one of the first steps towards healing....
You are very right pushing through just makes it worse for a couple of days...