It’s been 6 years…
6 Years since I got sick with no explanation, and was forced to learn how to cope with the increasingly excruciating pain of headaches during every hour of every day. 5 Years since socially crippling depression and anxiety crept their way into my soul, and psychotic episodes made me beg for death, due to the realization that my pain would never end. And it’s been 3 and a half years since I left the Air Force, with a VA 90% permanent disability rating as a result.
I wrote something like this here a few years ago, when I was learning about my pain, but I’ve changed a lot since then. As have my questions, and this website as a whole. With the world waking up and becoming more open minded by the day, I can’t imagine it would hurt to continue to seek intelligent advice right here. From new and old hethens alike.
I will preface by stating that I never went to war. (This matters to some people.) I never deployed. I never even fully made it out of training once I got to my first official station. Hell, my headache started while I was home on leave for Christmas and simply continued to get worse every day. The military is not my focus. The way they treated me emotionally, the way they tried to treat me medically, and all of the possible reasons for why my pain started, are no longer important for me to figure out. I’ve learned how to accept the lack of answers as a part of the truth.
6 years of unsuccessful treatments and procedures, ranging from a simple massage, to hours of surgery, and a plethora of medications have confirmed the fact that I will not find an answer soon. In the end, I was given an informal diagnoses of fibromyalgia, though still, nobody knows why I am in pain, and all treatment has plateaued. That’s just the way it is.
The next step for me upon realizing this, was to figure out what I would do with my… conditional freedom.
For the first time in my life I am away from all of my family (I joined the military right out of high school,) and I no longer have the government watching over me (for the most part.) I am completely independent, relatively self sufficient, and I am living on a farm as a (very light-work) part time ranch hand for the Aunt of an old friend (a friend whom I rarely speak with now.) I have an income that I can live off of without having to work (though I remain below the poverty line), and I have all of the free time in the world. College tuition will be paid for in full by the VA whenever I decide to go, and if I decide to get a working man’s job then my disability pension will not stop. How could anyone possibly ask for more?
But there’s a big problem.
My headaches are crippling to the point that I only have enough energy to get out of bed and survive (eat/drink/bathe/stay warm) for the day while I cope with the pain. I can not, and will not entertain small talk for anyone, Not even someone I love. I’m just not willing to donate the energy or mental capacity anymore. In-fact, the work I do here on the farm will often siphon vital energy from other tasks that require energy to be completed (namely showering, brushing my teeth, washing my clothes, cleaning my environment, etc.) I don’t dress in dirty clothes, I don’t stink, and my environment is clean, but it takes strong prioritization skills and all of my energy reserves to maintain that. I can truly understand how so many homeless veterans became that way, with nobody left to care about them, with nobody left to try to impress, and with so many people whom they thought they were close with just forgetting about them. If I wasn’t here with someone else’s family I’d probably be on the streets too… if I was even still alive. My parents would probably argue that point, but I’ve learned that they are nowhere near equipped to support me emotionally. They just can’t comprehend it and they simply don’t want to believe that I’m suffering or be around it.
What this all means to me though, is that there’s no way I could have a “job” on any sort of consistent basis, and school is the same situation (more consistency required than a job.) I can’t even read a book without immediately feeling nauseous. And when I force myself to continue reading, I lose focus and forget everything in my head due to the brain fog. That, or the pain becomes so bad that I throw up, and as a reflex immediately start searching for a safe place to lose consciousness (fall asleep or black out, I can’t really tell the difference when it happens)
I can cope, I know how to survive. I can endure massive amounts of pain and suffering as long as I know it’s coming. I have walked myself, step by step, day by day, through 6 years of increasing pain. I’ve survived every suicidal thought in the middle of the night, and most of the feelings of insignificance and worthlessness. But it has been very very hard, and each day is becoming more and more difficult to live through.
I do smoke and it does help… a little bit. Certainly more than any medication I’ve tried. But it has never taken away the pain. It’s a quality of life thing, where I can feel normal and relax my tensed up muscles, slow my heart rate, and just rest… COPING with the depression and pain suddenly becomes a little easier, but neither goes away.
To summarize everything above, and get to the point – I can’t travel. I can’t work. I can’t study. I can barely survive on a day to day basis, and yet…
My desire to do all of these things still exists.
Without a job… without being in school or traveling to new places… without friends that are making new friends to introduce me to… With the few people I meet online interacting with me exclusively through the internet… With absolutely nobody to relate to…
How could I ever make a new friend, if not by chance alone? My town is small and full of bible thumpers.
What could I possibly utilize my remaining time on Earth to accomplish, without massively increasing my suffering?
How could I ever travel to new and exciting places, when I’m afraid that anything planned will be affected by my inconsistently fluctuating levels of pain? Let alone the fact that I can’t do it alone and somebody would have to deal with my inconsistencies.
I want to fall in love again, in a healthy way. I want to use all of my free time to build up a place where I can support myself, and maybe someday a small family, without relying on money (low maintenance organic homesteading.) I want to go to school and learn something new, from musical instruments to farming, to outer space, and everything in between. I want to, but there seems to be no way the more I try to figure out how to attain any of it. My income is too low to save enough money in my lifetime to buy land, let alone put a small house on it and build up the soil. College degrees take 2 to 4 years of reading and writing and math etc. and if I fail to attain my degree then I will have to pay all tuition costs back to the VA. A minimum wage job, which is all I MIGHT be able to get with no degree, and maintain since it’s brain dead work, will not pay for any of this either. so I’m stuck.
I don’t think I have the ability to do this alone. Yet here is where the universe has placed me, isolated in a rural town and seemingly stuck, perpetually looking forward to the next 1st day of the month when I can put a little more into savings for what seems like no reason other than to have it at this point.
Is there anyone out there who understands what I am going through, or has conquered the feelings I’ve described in spite all of the pain, the creeping depression, and the social anxiety?
Is there a place for us in society where we can feel like we are making progress in some facet of our lives, or at least feel like we are doing something worthwhile for someone else that deserves it?
What have you found that helps you get the motivation to pull yourself out of bed every day, when you know it’s going to be the same thing as yesterday? The same mental and physical pain. The same safe routine to prevent a blackout.
The disappointment in the middle of night upon realizing that today was indeed, the same as yesterday; save for the level of suffering. The realization that you haven’t had a conversation with another human being in weeks for reasons you have no control over anymore.
My hope after writing this, and reading through it over and over again, is that someone else in a similar situation may find it later and your responses will help them in the same way that they will hopefully help me. That my story of trial and survival, though currently incomplete, will keep them walking forward even when it seems like there is no purpose at all. I will be reading every response personally, no matter how long or short. This is me asking the Universe, just as much as it is me asking every soul here. So I intend to listen.
There’s something in all of us that desires to be alive through the worst imaginable situations, I’m personally hanging on to that with everything I’ve got. But I grow so weary as the years pass.
Thank you so much for your time.
You are really in a tough situation, no wonder you are at your wit’s end!
I have been diagnosed with fibromyalgia too, although I must say I don’t suffer anything like the severity of symptoms you do and they are not so unrelenting. I do feel the frustration of being unable to do so many things I would like to do, I try to do things but I run out of energy or start aching before I achieve what in the past would seem a very small amount. It is a demoralising and depressing experience. But, I found that I feel better about it if I lower my self-expectations and shift my perspective so that I am not constantly falling short of what I would like to do, or feel I should be able to do.
I have learned to view my small achievements as something of a victory… for me, not compared to my pre-illness self or other people, but for me the way things are now. I find some solace in this and ther are days when I feel I have achieved something and I can get some satisfaction from that. It seems that you make real efforts to ‘function’ in a nigh impossible situation, in my book that makes you a courageous high achiever, that and you persevering against such adverse odds.
I don’t suppose this is much help to you Viv but I thought I’d pass it on anyway, I truly hope that you can get into a better place than you are in right now . Alex
From what I know about Fibromyalgia, it’s a broad category that they place people into when they can’t figure out what else could be wrong. There doesn’t seem to be a test or any definite way to say someone has it. Everyone’s symptoms are different both in type and severity, but it is a degenerative illness and one with no cure. As we get older it’s almost guaranteed to get worse. I’m afraid of letting my quality of life fall below my current standards (considering my standards have dwindled down to basic survival needs) and preventing myself from getting sick with anything else like the cold. That much more pain would be enough to send me over the edge and create a snowball effect of compounding issues. The worst part is… I’m only 25 years old. I’ve got another 50+ years to try to live through this and my reasons to do so have all but vanished in merely 6.
Through all of this pain, there has been lesson after lesson to learn. Lessons that nobody else will have the opportunity to discover without also enduring great suffering. My pain woke me up as a person and made me fall in love with who I am unconditionally. Made me care for others as I would myself, and see the way way the world works. And while I was psychotic I felt as though I connected directly with the universe. I will always be the first to admit that this suffering has made me a better human being. But in the process it ruined all of my relationships, and removed every imaginable opportunity to meet new people or make progress. I’ve had lovers tell me I’m lazy and unambitious, “friends” that flat out said they wouldn’t help me, and family that asked me to leave after only a few months….
Despite all of this, there are good days. More like good hours, but those are the days I look forward to as they become further and fewer apart. Once or twice a year, in the middle of the night, all of my pain will stop for a full minute or so and it puts me in total bliss. I feel normal again. But it’s a reminder of just how bad the pain has been lately, and I always know it’s going to get bad again fast.
I’m sorry that you have to go through it too. I wouldn’t wish this type of pain on my worst enemy, literally nobody deserves this. But just to meet another person who is pushing through it and surviving means a lot. And maybe my story will motivate you on bad days too, after all I haven’t given up yet.
I hold on to the chance that something will change someday, but as I said, I am getting weary.
Thanks again for taking the time to respond. It has been difficult to think and write, as I imagine you’ll understand. I intend to find more answers here though, so I’ll visit this post for months and years to come, and see what else the Universe has to say. I am open to any form of discussion here, if only to feel connected again.