A day at a time.
Thanks for relating. I did not read this whole thread, but did you post your situation, or would direct me to it? Or like to share? Often I forget there are others in the same (or similar) boat. I know there are, it's just hard to see in day to day life. Most of my friends abandoned me at diagnosis. A few stayed...that is to say, didn't refuse contact or try to avoid me. I also suffer from fear of abandonment, so I tend to push people away before they can get too close as a defense mechanism, that is if my anger doesn't drive them away first.
Just relating is good enough, and I thank you for doing so. I'm trying to work on my attitude but it's not improving unfortunately. My hate at the world is nothing more than a projection of hate at myself. It's anger, and it turns into a vicious cycle. I hate the world, I see it reciprocate in kind, and this in turn feeds into my hate. I've tried to go to anger therapy sessions recommended by my therapist, and these programs don't even scratch the surface. Not to belittle others' issues, but I'm sitting there and people are talking about not being able to deal when someone drives too slow or that cuts them off. My anger's not just day to day aggravations, it's murderous to my core, and I'm lost as to where to even begin to approach or penetrate it. I suppose forgiveness will have to be it. I never realized how much strength it really takes to forgive, and I don't think I'll be able to. I'm not the bigger man, at least not presently.
Anyway, thanks again, and take care.
I tend to burn through friends pretty quickly. If it's an impossible situation for me to deal with, the people I befriend have to deal with it in some ways too (especially on the mental end) and it can be too much for them. The people I'm closest to have stuck around (often persistently) but I feel very guilty of that because I'm just getting worse and worse and have increasingly little to offer except being a burden.
Yeah, that anger I can understand. I don't deal with it often just because I'm so rarely around other people (I spend 99.5% of my time by myself), mostly by choice. I'm usually in too much pain to socialize. I do know that I feel rage when people are bitching about their colds or something else that really isn't a big deal in the grand scheme of things. They have no fucking idea.
As for me, I've written it up before but I have no way of knowing where that post is so I'll just work on it throughout the day (as my pain allows). Plus, it'll allow me to get into much more detail.
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Aside from some fatigue, concentration difficulties (diagnosed as ADD) and transient irritable bowel, my health was mostly stable growing up (although I later learned these were actually early symptoms of what would become my illness once it triggered). I did my thing and started college as a composer (later switching to piano as I had been playing since I was 5 and loved it). This was the happiest period of my life, without any doubt. In the beginning of my fourth year there (late 2002), I started to notice shoulder pain but mostly ignored it because I just assumed I was sore due to the stress I was under (preparing for my senior recital). In early 2013, I started to experience arm and finger pain, which was terrifying because I needed both of those for my major. I was also getting back and leg pain. None of this was severe (yet) but it was becoming a serious concern. The day of my senior recital, the finger pain was so bad that I was worried I wouldn't be able to perform but I took a warm bath, hoped for the best and I'm guessing adrenaline got me through it because it was the happiest night of my life. I don't think anything will ever top it.
Over that summer (I still had one semester left in late 2003 because I took less credits my fourth year and needed to make those up), my symptoms continued to worsen. Random headaches, fatigue, pain all over the body. I got through that final semester just barely (GPA dropped from an average 3.9 to a 2.5) because I couldn't type any longer and had to use speech recognition software to write out papers (when I was capable of doing this at all). Those four months are mostly a blur now. I only made it through because my mom insisted that I graduate, that if I didn't now, I never would. She was right. I remember crying in the car of who was at that time my best friend. I remember having such a bad headache in Advanced Analysis that I couldn't concentrate on what my teacher was saying. I remember the brace that was around my left arm at all times. I remember the chair of the department walking up to me and asking what I was going to do next and I told her I didn't know, lifting my braced arm up. She was like, "Okay" and then walked away. Five months before, she had offered me a job as lead pianist for the singers there. I was unable to take piano lessons or fulfill the requirements for my sole performance class and the only way I got through them was because my teachers took pity on me. Every other class I had was non-music because that's all the credits I had left and I hated all of them.
During this time, I went from doctor to doctor and no one could figure out what was wrong with me. I tried a lot of various drugs, none really touching the pain and some with really bad side effects. As far as painkillers goes, I wasn't given anything stronger than naproxen. It didn't help. I would drive out to my home town (thirty miles away) every week to get a massage from a really lovely woman out there. It helped to a certain extent but she eventually moved away. In retrospect, I think she knew what was wrong with me (the nodules and bumps of my illness are fairly obvious to someone used to what healthy muscles feel like) but just didn't have the heart to say anything.
The next three years were very unpleasant as I continued to slowly deteriorate. I didn't really do much. The depression and grief got really, really bad. I missed my friends from college (who all moved on after graduation), I missed my work, I missed school, I missed my health and I've never handled life without a schedule very well (I'm autistic) so having nothing to do each day just wreaked havoc on my mental health. I have a vivid memory of being in my old apartment, completely manic, just throwing shit around. My mom was there and looked terrified. She called the police on me at one point, who had their hands on their holsters the entire time because they walked in while I was cutting a grapefruit. I refused to speak to her in the hospital, I was so angry. I had lost all hope and I still had no idea what was wrong with me.
My arm and finger pain went away in 2004 and for the most part has remained that way, which allowed me to continue playing the piano on occasion. The other symptoms made it difficult to do this for longer periods of time. I did do a couple of shorter recitals for friends and in 2006, started working an hour or two a week as a favor to a friend of mine, who needed a pianist for voice lessons she was taking. I got to know the teachers of the studio very well and considered them my mentors. I think I was mostly able to get away with this work because I was only needed for the last thirty minutes of each hour block and spent the first half sprawled out on their couch. I didn't get paid much ($15, later upped to $25 an hour) and the drive to and from was often as long as I was working but it got me out of the house and at least engaged in music again so I didn't mind.
Around this time, I finally got a diagnosis, of fibromyalgia. Unfortunately, this didn't help me much because there's no cure and the only treatments are symptom management, which I had already tried back in 2003 with the array of drugs. I was also starting to realize what a controversial diagnosis this is, as I had friends tell me they didn't believe it was a real illness and that it was all in my head. Ten years ago, doctors sometimes believed this too, although this has been changing with more research coming in. Invisible illnesses can be very devastating in this way, as you LOOK fine but inside, you feel like you're dying. The only way I could convey to people I was having a bad day was to tell them and I dreaded the judgement and hated whining so I mostly kept my mouth shut and tried to power through as best as possible.
In late 2006, I stumbled across an experimental treatment that claimed to reverse the disease. Like everyone with a chronic illness, I've come across sham cures and even had friends and family members tell me about some new treatment that had "saved" someone, only to be inevitably disappointed so I stopped bothering. Doing my research on it, I discovered a few things. One, it failed its double blind test (due to errors made) so it's controversial but there was also pretty clear evidence that it has helped people, from Amazon reviews (on the book) to a Usenet group dedicated to the treatment, with people posting for help, provided by the doctor's nurse and some other volunteers, who are now much more functional due to the drug. In fact, aside from my mom and my oldest friend, Bob, I haven't told *anyone* about this chapter of my illness, mostly because I feared sneers and judgement. Now I just don't give a fuck anymore.
I bought the book, read it and was fascinated because the opening chapter basically described me to a tee, the way the illness manifests itself. It was actually eerie to read. It also quashed one of my last suspicions, that it was a moneymaker for the doctor who created it. The drug is a generic now (guaifenesin) and the book was specifically written to get this information out to people who were unable to come see him. He has treated thousands of patients and thus, had a startling amount of information on the illness, far more than any other doctor I worked with had.
I flew out to him in December of 2006 because while I could have done this myself, I wanted to meet the man (in his late 80s now and still in practice) and get mapped, a process where someone runs fingers down your body and marks on a piece of paper the parts of muscles, tendons and ligaments that have swollen and bumpy sections. This makes it much easier to observe physical signs of progress. My first map showed 66, an incredibly high amount for someone my age. He looked at me and told me that I was "a very sick man." It was really the first time that any doctor acknowledged that for me and I cried openly. My mom was there and also cried. Within one months on the proper dosage, you have an idea of whether it's working because your thighs completely clear but due to monetary concerns, I was only able to return three months later. When he told me my body map was down to 42 swollen sections, I wept like a baby. Finally, there was some hope.
Over the course of the next three years, I steadily improved. I didn't really start to notice a difference until late 2007, although my maps were continually improving. In total, I returned to LA to see this doctor 16 times. Expensive but worth it. In early 2008, I did my first major gig in years (pianist in a musical). By mid-2008, I was working at my old college part time. I also increased the hours I was working at the voice teacher's studio. In 2009, I opened myself up fully to business and started taking on a bunch of freelance gigs, often working for people and singers I didn't like but they paid me well. I was charging $40 an hour by this time and people were gladly paying it for my services. In 2010, I took a bunch of trips, including twice to New York City, which I adored. I have a good memory of being in Eastern Washington during my 30th birthday, visiting members of who are basically my second family. They made me a cake. It was so delicious that it took a little of the exhaustion out of the drive I had to make to get there (five hours).
In late 2010, my latest map showed that some nodules had reformed in my back and shoulders. I hadn't noticed any change in symptoms so I was shocked and worried. He rose my dose, I returned in early 2011, they had vanished again and I breathed a sigh of relief. Sometimes this happens, he told me. The cytochrome system can be vicious. I continued with my life.
In July of 2011, while back in Eastern Washington, I got hit by a wave of pain. It was the worst I had felt since 2007. I struggled through the next couple of months, experiencing periods of feeling ill alternating with periods where I feel fine (common in the early stages of the illness). I did a big production in August but I remember being very ill-tempered during it. I was able to return to Los Angeles in October and my map showed that a few areas were better and a few others were worse. The doctor rose my dose further.
I continued to deteriorate. Pain was increasing, fatigue was worsening. The good days were lessening, the flares were getting longer. I continued to see the doc throughout 2012 and while I wasn't getting significantly worse (according to the maps), I wasn't improving either and my symptoms made that very clear. I held out for as long as I could, my work schedule getting increasingly cut down until I finally retired for good in June of 2012. The back and shoulder pain made it impossible to sit at the piano long enough to do my job. It was devastating. I can't even describe what that felt like. One of the worst parts was how my colleagues all abandoned me once I was no longer of use to them as a musician. I had to do some judicious pruning on Facebook because they continued doing their work and I couldn't stand reading about them doing what I desperately wanted to do. My eventual plan was to cut back on freelance stuff (because all the driving was taking up a lot of time and the wear and tear on my shitty '93 Ford Escort was significant) and find a full-time job at a school or college. This never happened because I didn't feel ready yet. Retiring the first time in 2003 was hard enough but having gotten it all back and then having to retire again? It was my dream career, the love of my life. The grief started then and has only worsened with time as I've lost more and more.
I continued to return to the doc every several months until the last time, in March of 2014. The maps showed I was either standing still or I was worsening a bit. We experimented with dosages. He even had me try a different brand. I was losing hope again. Things were getting really bad. By mid-2013, I was alternating very severe flares with periods that were still painful but at least tolerable. Since then, I've noted each new symptom as it has started and then never goes away. July 2013, foot pain. November 2013, scalp achiness and tingling. Hip pain increasing as well. August 2014, debilitating fatigue, where I can barely lift my head. Thigh pain and shoulder pain has also gotten much worse by this time. January 2015, increased sensitivity of extremities, where just lightly touching my skin hurts. Also increased eye soreness, periods where they're both red, blurriness of vision. I got this looked at and the eye doctor said nothing was wrong. March 2015, numbness in my big toes and occasionally, fingers. April 2015: Transient ear pain (may be connected to TMJ, which is also bad). September 2015: Ears extremely sensitive to certain pitches. I had to change my text message notification because it caused me pain. This started out occasional and is now every day. Eyes also sensitive to light, which forces me to put on sunglasses whenever I'm outside. Random itching all over the body. Throbbing in skin, often on the face. February 2016: Scalp pain has been gradually increasing for the last few years but it becomes extremely severe starting in February. The pain can be so bad that I'm crying. I'm guessing that it's referred pain from the back of my neck, which has also been getting worse, to the point where it can be difficult to move it. Just last week, I've noticed that I no longer can stay asleep longer than eight hours (and even then, I wake up multiple times). Before, I liked to sleep twelve so that I'm awake as little as possible. Also new, when I wake up, my hands are frequently numb and tingling.
In late 2013, I added a primary care doctor to my treatment, because I wanted to experiment with more "conventional" treatments for fibro. Just like ten years ago, these all failed or just made me feel worse. For a while, the strongest painkiller I was given was tramadol (ineffective) and I got an occasional supply of Vicodin, thirty pills every six months. I'd fight for this more but Vicodin isn't much more effective. If I'm lucky, it'll drop my pain from a 9 down to an 8 but still doesn't make me particularly functional. Running out of options, she had me try medical marijuana, which just made me feel loopy and anxious. It had little impact on my pain, although it does make me care less about it. I could go further on the painkiller scale, try methadone, oxy, that type of stuff but I question my ability to get them, given how restrictive narcotics have gotten lately. The side effects are worse, I doubt it'll affect my pain enough to make a big difference and I don't want to be dependent on those drugs, with dosages having to be gradually increased as my symptoms continue to worsen. I'm currently on an antidepressant (Wellbutrin), take two trazodone for sleep and the occasional Vicodin (or two).
The effects on my mental health in the last five years have been devastating. I had to give up everything that made life living for, one thing at a time. The chance to fall in love, career, the ability to travel and see the world, a whole bunch of friendships. My best friend at the time dumped me without explanation in late 2013, something which I've never recovered from. Other less closer friends have drifted away as I've been unable to hang out with them in person. Online friends are easier to maintain but I'm finding myself with much less energy to do so. The loneliness is frequently crippling as textual communication methods aren't as fulfilling as seeing someone in front of you.
I am now completely debilitated. Up until 2015, I was at least able to devour entertainment but starting in 2016, I'm barely able to game and my television watching has dropped dramatically because I can't really concentrate on what's happening. I've mostly mentioned the pain aspects of the illness but it also has a severe effect on the brain, especially cognitive abilities. My short-term memory is completely shot, I frequently space out in the middle of a conversation, I go through periods where I can't focus on reading (I've given up on longer books) and so on. It is exceedingly unlikely that I'll survive past 2016. Hell, I'm not even sure if I'll survive the next few months. I'm in so much pain that I go extended periods without food because I can't even go to the grocery store. With this rate of progression, I'd have to move out and back in with my mom, which will make a very bad situation even worse. She and I don't really bounce well off each other and seeing her desperation every day to what I'm going through would destroy both of us.
It's a circle without end. Or at least only one possible end. I deeply regret the effect my death will have on my mom. She'll be crushed, even if I think she'll understand. Her only other child is schizophrenic and lives by herself in an assisted living facility. Our family history is one tragedy after another. Mom has her own chronic pain issues (and also fibromyalgia, although not nearly as severe as mine. I likely inherited it from her). I also have a lot of friends, a lot of people who love me. I'm very aware that I'll leave a great deal of pain in my wake. It kills me that I won't be there for their big life moments but the way this is heading, I wouldn't be able to be there anyway. Kinda hard to show up to a wedding when you can't get out of bed.
I just want people to remember me as I was, so many years ago. Not this shell of a person that I am now. Thanks for reading, if you managed to make it all the way through my life story.
Feel free to PM me anytime if you need to vent.
