At rock bottom and scared. Someone in a similar situation, let's help each other find ways to cope.

[LD35]

First I need to clarify one thing for those who read here, a lot of people visit this forum and are in a really hard situation with symptoms they really struggle with. Don't let this post make you feel like there isn't any hope, because if you instead look in the recovery section you will see that even though it's hard and can take time and it's scary, things very often go in the correct direction and you will get better, so please don't give up hope. I feel like it's really important for me to mention this, because it's easy to start to see the worst possible outcome as the likely outcome. 

 

The reason I write this post is so users here can help each other to find ways to cope, even when it's really dark. 

Let this thread be a thread where we can share our fears, because I think being able to vent is important. But also a thread where we can share and figure out ways to make it a little easier to be in this situation. And also a place where we can see each others situation from a different perspective.

Just one important thing, don't let this thread be a thread where we bring each other further down. So sharing our fears, but not fueling each others fears. To give an example what we avoid "Yeah I agree, there is no hope for us"

 

 

I have written about my symptoms before, but a short summary will be included here.

 

Over a decade ago I got neurological symptoms, it was either from lyme that I had or from hitting my head quite badly not long before symptoms started.

Months after I got tremors and vibrations in my head, and always felt completely physically drained. I also got problems with my bladder (overactive bladder, and a sensation of leaking out in my urethra.  

 

My life fell apart with social isolation, not working, relationship ended. But over the years my bladder symptoms calmed down to a level where I had good and bad periods, it was hard, because I couldn't plan anything, I never knew when it would be a calmer period or a worse. But I managed to cope even though life was hard and empty.

 

Around four years ago I took Zoloft for a short period, but stopped because it made my bladder symptoms worse, three four days after I stopped out of nowhere I got a sudden bladder urgency to a painful level, I had to go all the time, and even if my bladder was completely empty I was forced to try to empty my bladder. Late evenings symptoms calmed down and I could sleep, and instantly when I woke up it started again. For three months I did force myself through everyday in hope that it would calm down, finally I couldn't take it anymore and was hospitalized at a psych ward. They gave me Valium 15mg/day, and it completely calmed down my bladder and it felt like I could breathe.

 

I had hope that I could withdraw slowly from Valium a couple of months later, but it wasn't possible because I got extreme bladder urgency, so I made maybe the biggest mistake in my life (but felt like I didn't have a choice), I stayed on 10mg Valium/day for over three years now. For a year or so it kept my symptoms calm, but slowly longer and longer periods with more and more bladder urgency. Now I have reached a point where it's rare that I have a calmer day, large parts of the day are either bad or really bad, for hours I can get a feeling that my bladder is about to explode (really painful) and I'm forced to try to empty my bladder constantly, and I need to do it voluntarily. 

 

Now to the problem, I don't have any strength left in me to cope, sometimes I can't eat for days, I barely sleep, I can't distract myself with any tv-series or movies, I leave my house around once a week to go buy some food. The reason is both because of my bladder and also the fear of what will happen, I feel like it's not far from me breaking down completely and end up at the psych ward again, and since I don't have Valium as RX they will do a quick taper and it will result so bad symptoms that I will panic, and in that situation they can choose what meds I should take, so it will most likely be high doses of neuroleptics. Me ending up at the psych ward feels like it can only end one way, me getting torture bladder urgency to a level where I will try to force myself to empty my bladder constantly, and I will not being able to take care of myself anymore, and I can see how I would end up in some group home screaming in pain with constant panic attacks for many decades, finally I will probably get high doses of sleeping meds (Like z-hypnotics to sleep) they may even start giving me benzodiazepines again (but only up to a certain dose and then it will not help anymore) 

 

I feel so stuck because I feel like I don't have any choice I can make. It's maybe obvious that I had serious suicidal thoughts, but it's not an option (I can't hurt loved ones, and I would also be too scared to fail, and end up in a situation where I'm in as much or worse pain and not even being able to communicate my pain) I also can't find ways to cope anymore, everyday gets harder and harder, and when I finally can sleep I wake up with panic attacks that are hard to describe in words. And I feel like whatever I do I will end up at the psych ward. 

 

I have loved ones who really care about me, but I still feel so incredibly lonely in this situation. 

 

I start with sharing the few things I use to cope, because if we allow ourselves to focus on the fears it will only get worse, and as you probably understand, I struggle a lot with this. I don't have that much in this "tool box" yet.

 

1. Since I spend most of my days in bed, I try to lay in bed with closed eyes and some calm nature or ocean sound, and decide to I will try to not worry right now, I can do that after I'm finished, and just listen to the sound and not think about anything.

 

2. Even though I'm not religious, but agnostic and I don't really believe there is a God, I don't rule it out, because I believe there is or was something bigger out there, it makes sense to me. So I pray. 

 

3. If I get extreme panic attacks, I sometimes take a colder shower to distract myself.

 

 

Ps. Everyone should of course be able to participate in this thread, maybe you are at rock bottom or maybe you have been at rock bottom and want to contribute to this thread.