How is pain affecting your life? And how are you able to cope even just a little bit in all of the areas?

[littleonefr1]

I've been in pain for several years. The pain has made me live my life differently.

It's affected my social life, my day to day life and getting little things done at home. It affected my family and my relationship with them.

It's affected me doing any physical activities. I used to run, do yoga, bootcamp classes, kayak, hike, you name it. Now, I have to admit that i do nothing. And part of it is mental. It's made me not want to do these things anymore because I feel changed from the inside and not able to handle them anymore.

I've managed to talk to a few friends who get it I think. And I managed to find this website. But it's not easy to stay positive when the pain is there day in and day out.

How are you affected and what do you do to help?

[BaneBane2424]

I am pretty much like you. Every activities that I did, I cannot do them anymore. I was a fitness trainer, I had a job at the supplement store and I was a young bodybuilder, you can imagine how I feel after stopping all of this and losing the job. I occassionally talk to some friends but they all know that I am really destroyed by this condition. I pretty much do nothing at home just like you. I barely go to the toilette, eat, and take a bath. I didn't slept for a month now. How do you manage to sleep?

[littleonefr1 in reply to BaneBane2424]

I'm so sorry to hear! It's crippling. It changes us. It's hard to live a normal life.

Sleeping is tough. It hurts, so that keeps bothering me at night.

And the pain makes my brain think negative thoughts in a vicious cycle and I usually can't turn it off at night. Sometimes, I'm so tired of thinking, I just fall asleep out of exhaustion. But it's not always like that. Sometimes, it keeps me up at night. So sometimes, I literally have to think about one thing that makes me happy or smile, and then I try and keep thinking about that while I try to fall asleep. If I feel like I'm going to think about something else, I go back to my happy thought lol!

Anything that brings me comfort I do it, like comfort foods during the day, turn down lights before bed, put extra pillows around me. Right before bed, I'll be listening to calming music or reading my favorite books.

Also, I purchased a portable TENS machine to help with tension, etc.

Other than that, I bought ear plugs and an eye mask lol, so I would not hear the least amount of noise and the little bit of sleep that I would get, would be the best.

And I'm starting meditation. I should do some yoga (at home not a class because there's no way I can do all poses with what I have). I think I need to learn ways to manage the pain I live with by doing those things, so the pain does not manage me completely.

I've tried different things to relax but I also met a doctor who has given me some things to try like the blocks, and meds. And I feel calmer now than I did before. So that helps for sleeping.

And I honestly have been trying to do the hardest thing by myself, which to me was: accepting what has happened and where I am now because of the pain.

That helped me mentally because I used to be angry at it all the time and want to fight it and I kept thinking "why me". But over time, I started thinking it's here, I can't deny it. It hurts, there is no denying that either. I can only try and take it easier than I did before. I do what I can. Sometimes I have to remind myself of that a couple times a day.

I have IC (bladder inflammation) too, so I can't even have wine or chocolate or coffee!! So that's not easy right there.

I just try and be good to myself. I don't beat myself up about it anymore.

What do you to help yourself?

[BaneBane2424 in reply to littleonefr1]

Oh, this post made me so touchy and emotional... Especially the part with "extra pillows around you"... Oh my god you made my eyes full of tears and heart so squeeze... 😳. My mom helps me a lot. But most of the day, I am just lying down in my living room, watching TV and surfing on my phone trough the internet. I have negative toughts every day. When I have to go to sleep, I don't drink anything 2 hours before bed because I know that urge to urinate will wake me up soon if I fall asleep only for a short period of time. And that little time that I do fall asleep, it's like 30 minutes maybe. Even before I fall asleep somehow, I have a bad toughts and pain just doesn't let me to be peaceful in my bed. I even have bad dreams and I started to develop frequent sleep paralysis. My brain is obviously so tired and exhausted and because of all those things, a big problem occurs and that became a viscious cycle for me for over a month now. Today, I experienced most severe pains I ever had and I still have them, and every day it seems to be worse than previous. I live in a big fear and darkness. After all, you and I know that we are not alone... ❤

[kalecolbe12 in reply to littleonefr1]

Try prelief from wallgreens..or Duane read t takes the acid out of food so you can have coffee and chocolate....worked for me

[littleonefr1]

I'm glad to know you have someone to help you a little. And we are all here talking to each other and sharing ideas and thoughts.

Think about all of the good things you have lived so far. I try and think of that and I feel grateful about the smallest things.

Have you tried medications for the urinary issue you have? I'm on one right now and I used to wake up at night to go to the bathroom and now I don't.

Are you on meds at all?

Hang in there. Some things can be done to help. You just have to keep trying. At your pace. Rest when you can.