How do I do I do this? How do I live my life with this pain? I have to work. Disability is not an option. I am 41 years old. I teach prek with 15 3&4 year olds all day. I have been out a lot b/c of the pain and meds. My husband says I am a different person because of the meds and he is worried about me. This just makes me angry! I 6 year old twins I want to do stuff with!! I had a gastric sleeve almost a year ago and have lost over 100lbs so I could do stuff with them and I can’t! I hate this disease!!!
Hi Carrie Ann, sounds like you're getting into a spiral. You know sometimes it takes a while for you to work out how to live with your condition in a way that's ok for you. It takes a lot of trial and error and patience. Not always what we want to hear. You sound pretty angry too and that too, is normal and ok - you just need to warn the folk around you when you're feeling that way and to find a way to let out all that emotion. You have a lot going for you - you're 41 and have two beautiful boys and a husband who loves you, even though he may not really understand. You have lost an amazing 100lbs - you have no idea how I envy you on that one :) and hating this disease - yep, pretty sure everyone is with you on that one. But don't let it beat you. Stress and stress hormones will often bring on attacks, so one of the key lessons I've learnt with this new friend of ours, is not to provide it with opportunities. Keep stress to a minimum, even if you have to lie to yourself to do that. I find having blind faith in the universe is helping my stress levels alot. With your family, talk to them. When we're not well we can become very vulnerable which at times can mean we end up going on the offensive defensive instead of just saying "help please". Sounds like you're husbands worried, because he can't fix it and possibly doesn't understand the TN. Call me sexist, but men really don't handle things they can't fix very well, from my own experience. So get the anger out - go to the middle of a park and scream yourself silly, or find a pillow and thump it, or something that will let you get the anger out, it may even be part of you mourning what you feel you've lost in lfie. Then get detecting and work out what your triggers are - touch, light, noise, cold, heat. Stress is usually the one that sensitises and avoid them like the plague. When you have an attack, pretend its just like popping out babies, and pace yourself, If you're getting stressed, focus on your breathing. Doing all of this will help you, won't fix you, but it does help. With your boys work out something you can do together now - kids are adaptable, and so are you. Aim for a 1 week plan and then stretch it out a bit at a time, one day you'll find you and TN are actually co-existing and you're still living your life almost to your original self, or even better, and it won't be that bad.
With the alcohol - it says no alcohol because the two don't mix - so don't. Hope this helps a bit :)
Thank you so much! You are so right. I am in the car crying as I read this. Don’t worry my husband is driving. Lol!
:)