My Journey with Chronic pain and illness the final Chapter
Depressions and Anxiety - the viscous cycle.
Throughout all this one thing to me became very clear. Pain is cyclical. It is the perfect breeding ground for depression and anxiety. Something I had dealt with my entire life. It becomes a trap. A viscous circle The pain makes you depressed , the depression makes the pain or illness worse. And the same is true for anxiety. It becomes a vicious cycle that is very hard to break. I have met too many people who had the depression and anxiety get the better of them. When your not physically well and in constant pain the combination of depression and anxiety can be deadly.
I have spent vasts amounts of time getting to know others suffering from the same thing or other painful conditions. Everyone has one thing in common, depression and anxiety and its killing them. I firmly believe you have to address that before you can learn the coping skills to deal with your pain. You can't do it riddled with depression and anxiety. It simply is not possible. At least not for me.
Mindfulness
"A mental state achieved by focusing one's awareness on the present moment, while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations, used as a therapeutic technique."
I decided I needed to start learning to calm my mind. Not focus on the pain. I have tried the opposite method where you hyper concentrate on your pain and try and push though it. This did not work for me. You may have had your doctor mention mindfulness as a coping technique. And like me you may have thought it was utter baloney. But I had tried everything else. I had nothing to loose.
I started working on meditation and relaxation. I read books on mindfulness. I used audio lessons. My pain was still very severe. The medicines I take helps about 20% but every time I sit or lay down it was always there. I had given up tossing and turning all night. I know what to expect now each night and I learned to "be with my pain". I acknowledge it is there but I do not give it any extra energy. I no longer let it take over my thoughts. I can now separate the two. Let my pain do its thing and my mind its. The thing with mindfulness is it takes time to see real tangible results.
Anxiety and Worry
I decided to write down everything that I had anxiety about. Little things, big things. It did not matter. I made a list. I realized I was under way too much pressure. I needed to simplify my life. I began dealing with the things on the list until it was nearly empty. This was not easy. Some were deeply personal things. Connecting with people I had ignored due to my self isolation and depression. But once that list was tackled I pledged to never get that bad again. So far so good. I continued mediating about 3 hours a day.
Finding purpose
Feeling better I became more active. I went back to physical therapy, continued to check in with my psychologist and psychiatrist and doctor. We have had to make small changes now and then but overall its been a tremendous help. I realized why my mind was so prone to wondering off to dark places. I needed to be focused on something. I needed to be... apart of something. I had worked my whole life until all this. I needed to find something to do. I volunteered at the animal shelter for a bit. The cement floor killed my back. But I enjoyed it.
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I realized anything physical was still out of the question. I had been learning more and more about crypto currency since 2014. I wanted to work in that industry. Just like I broke into tech field right before PC's were hitting desks when I was young. Crypto offered that kind of rare opportunity. I hung out in Slack and did bounty work for a project I liked. I spent a year getting to know people on the team and letting it be known I wanted work. I started getting more small jobs. And then, it happened. I was offered a work at home job. I had to be honest and explain I had some limitations. The job was fairly easy at first. I got a special chair that makes it less painful to sit. Its a ball chair. Basically an exercise ball built into a chair. Its the only thing I can sit on for any length of time. The team was very understanding. I never complain about my issues or use them as excuses. Its been almost a year now and I have gotten two raises and more responsibility. I am careful not to take on more than I can manage. I have to keep that list of worries short. My life simple, but full. I am so grateful for my job.
Online Support Forums.
I have spent a lot of time in support forums for Encephalitis , Chronic pain & Pelvic disorders. One thing I learned is almost everyone who was dealing with Chronic Pain was dealing with depression and or anxiety. For some the depression was new. For many others like me we already had it and Chronic Pain had just made it much much worse. Support forums are good for talking to other with similar issues. To be able to complain without judgment and have someone who does understand and really listen can be powerful . I owe much to places like r/chronicpain on reddit. However, there comes a time for me when these places become something I have to sort of graduate myself from. So many people suffering and in different places in their journey. I becomes too much for me to take in. I was beginning to work on not focusing on my pain and not feeling the need to complain. ( Self Pity) This is difficult when your active in a large chronic pain group. But I want to emphasize that these groups can be lifesavers. If your isolated depressed and in pain and feel like nobody understands or your ready to give up. Then a support forum can and do save lives.
Uncomfortably Numb
As was working on myself , I knew if I was to learn to cope with this pain I had to deal with my anxiety and depression. I had a mind that would never shut up. Endless mind babble. My thoughts were always drifting to the past or worries about the future. Social anxiety kept me very isolated for a time. I was joyless and numb and I was becoming too comfortable in that numbness. I realized I wasn't sad, I wasn't mad, I wasn't anything. I was numb. I felt no joy. I am musician and I couldn't even pick up an instrument. Music had become just noise. The mindfulness helped with coping with the pain and did lift my spirits but I still had bad bouts of depression that scared me.
It would be easy to blame this all on my past medical issues, and for a time I did. But that was not the truth. The truth was I had been anxiety ridden since I was a child. Severe depression ran rampant in my family and I was no exception. My uncle in the middle of all this took his life with a shot gun to the head. He had been severally depressed his entire life.
Seeking Treatment
I talked with my doctor and was sent to a new out patient mental health program PAMF was offering. I was diagnosed with severe anxiety disorder and severe depression with melancholic features. Again I was offered anti-depressants. I told her all the ones I had tried and the bad effects I had endured. She asked me to take another shot at it. It was possible the right anti depressant might help both my nerve pain and my depression. Although I was warned that often these treatments failed with those who had melancholic features with severe depression. But it was worth a shot.
California Rocket Fuel
I was prescribed Effexsor in the day with a small dose of Remeron at night. This combo is called California Rocket Fuel by some in the profession. I soon found out why. Effexsor was like speed at first. And the Remeron made me sleepy at night. Suddenly I was full of energy and a bit manic. I lost my appetite. I did not like it. I stuck through several months of this with not much of a change.
Brain Zaps
Then I got something I had only read about in forums. People describe it as Brain Zaps. Because that is what it feels like. A zapping in your brain. Its very disturbing and debilitating. You also get dizzy and can't focus on anything. Along with that came RLS or Restless Legs Syndrome. For those who have never had severe restless legs its no picnic. Its not like you feel a tad fidgety. You have to move your legs its not really a choice. It becomes more and more frustrating as the night goes on. Add in severe night time pain and I was ready to get get off these meds. I felt like that was it, I was running out of options medically.
But I went in and talked to the psychiatrist. She was very familiar with the term Brain Zaps and said people think its because the dose is too high but its really because its too low. I was skeptical, I know it happens when going off anti depressants. They even gave the host of problems people face when going off an anti-depressant an official name now, Anti-depressant discontinuation syndrome. Effexor is one of the worst to get off where these issues can last 18 months after discontinuing. So you might think I am crazy when I ended up increasing my dose. Not crazy just desperate. Within a day the zaps stopped. I was given another medicine Requip for the RLS which worked great and even helped me sleep better with no real side effects of note. It took about 5 months for the Effesor to start to work. Three of those months I had pretty bad side effects. But then suddenly everything kind of smoothed out and I was feeling again. Joy, sorrow, and all the in-between. I was alive again. Music moved me. I had lost the love of my life suddenly and tragically when she passed about 6 years prior. I realized I never really grieved or come to terms with it. And suddenly I felt immense sadness. It wasn't a bad thing. It needed to come out. I think I cried for two days.
I do not write this to promote antidepressants. I think they have their place but are very over prescribed. For me it is needed.
So with my depression easing and my list of worries basically fixed. There was still anxiety. My mind still babbled and raced. It had lessened but I had more work to do. I began meditating more. I found it also helped my pain if I could get relaxed enough. I did this pretty religiously for about 12 months. And one day like a switch had been flipped. My mind was quiet. I felt truly at ease for the first in a very long time. No racing thoughts. No mind babbling. I was calm as a Hindu cow. I remain this way to this day.
So what are my nights like now? The pain and sensations are the same but now its much less when I sit. That has improved. Nights when laying down are not as horrid. Its like the volume of the pain turned down a bit. Very uncomfortable sensations become easier to ignore with time. I sleep about five hours a night. I have wonderful vivid dreams. I don't try to sleep when I cannot. Some nights that just is not going to happen. Luckily my life allows me to adjust to that. I take naps in the day when the pain is less severe. As I type this I have a horrible knot, like a ball twisting and burning. But if I pay it no attention it doesn't get worse. If I focus on it, the pain will get more intense . Its like feeding a fire. You have to be with your pain but not feed it. Pain is like a fire it needs your mind to feed it. If it gets too bad I meditate though it sometimes for hours in one session. And eventually it calms down.
Distraction can be a tool too. Just choose healthy ones. I have to keep my mind busy and focused on something.
Like writing. But I am happy again. I am OK with where I am at. And my life is just improving more and more. It all boils down to how you choose to cope. It is a decision. You can choose to be bitter about it, blame the doctors, the meds, the system, your disease -- or you can just let go. Choose life. Make small changes its not a race. I tried to return to work several times and failed which was for me devastating. I never had such issues with work. You cant give up. You have to give things time to work. And you have to address whatever personal demons you have. For me it was things like guilt over the loss of the love of my life. She died very suddenly and I never got over it. I had guilt over things I wish I had done and things I had done. I realize now I don't want to loose those memories, good or bad.
If you cant fix the pain fix everything else you have control over. You just might become a better human being in the process.
I used medications and mindfulness and western medicine. It might be different for you. I also live alone. It was easier fr me to make changes than if would be if I was married and had kids. I hope to not be alone forever. That is something else I need to fix.