I feel the same way. I feel like I am slipping into a deep depression. I drag myself to work & kill myself to hide my pain, because I am so scared to lose my job due to the fear of not being able to work soon. My husband has all but abandoned me , partly because I was always either unable to go places or had to leave early & he just started living his life without me. I finally got a diagnosis, but its too late, & I think he still thinks I am a hypocondriac. On top of this, I still am having a hard time finding a surgeon, my symptoms are getting worse, & I am having extreme anxiety about the surgery & my other problems. nobody seems to understand. I feel so alone
Oh honey, we all understand. At least my husband and son understand what I'm going through, but the rest of our family do not understand what I'm going through. Even my sister says 'well I hurt & I'm able to work'. I have a used to be friend that said the same. They do not understand that there is pain & then their is pain. I don't know if they would understand even if they had our pain for a month because then they would probably think no person hurt as much as they did. My problem is that I've had this so long that people can no longer see my pain. They think I"m normal. I still have days that I hurt from their thoughts and remarks, but then I take my cares to God. I pray that God opens their minds and souls.
I know it's easier said than done, but try not to stress. Stress makes our symptoms worse because stress tightens our muscles. The neurosurgeon I see said swelling can press in on my syrinx and/or chiari and make my symptoms worse. He said that's why my symptoms wax and wane. To me, tight muscles will do the same as swelling. Also, please try to find ways to relax like reading, watching a good movie or show, playing computer games, crafts, or whatever your body is able to do.
I'm not able to go out as much as I used to because of my pain but I do go out as much as I can. I love being around people that are not too loud. Also, I try to go outside every day. 10 minutes of sunshine, without sunscreen, allows natural vitamins to enter our system. After 10 minutes it helps to put sunscreen on.
Try to do some gentle exercise or stretches every day. The physical therapists told me that I can do any stretches/exercises that I want to as long as I don't hurt in my spine or the back of my neck. They did say no exercises like jumping jacks or push ups or sit-ups. They suggested wall push ups where you stand a few inches from a wall or door & lean in on your arms & push away from the wall or door. Also using stretch bands to exercise with helps too.
I have an aunt that's gone through several spinal fusions. She said the first year people could see her pain & they accepted that she was hurting. She said after a while people, including doctors & nurses, could not see her pain. That's true with us too. I'll be praying for you and the others here too that people can come to an understanding. God bless you.
Thank you for those uplifting comments. Sounds like you're a strong christian woman - me too!!! And it's only because of my faith in the Lord I get through each day. Please pray for me as well that the Neurologist I'm seeing very soon will have some explanation for all of my symptoms.
God Bless all of you who are suffering from this disease.