The year I was 27, was the best of my life, so far. It was Seminole and singular. As with most experiences in my life that move me, nothing in particular happened that year. There was no grand life experience, no wedding, no child coming into my life, no house to buy, no fantastic career path, no fortuitous meeting, no amazing journey. There was no one thing I can point out to you that would that you could associate with some shared life occurrence that would make sense as to why it was so wonderful. I'm rarely moved by such things. Those shared life experiences that most of us encounter at some point in our existence have rarely registered any higher than a nice summer day. Those clear moments that the majority point to as once in a lifetime experiences for us all have never been the parts of life that I point to, that are in any way important to me.
So the year I was 27, was so amazing to me, was for something so small that most people would take it for granted. It was the best year of my life because I felt wonderful the whole year. Every day, every moment of that year, was a good day, a good moment. I felt the way I always thought I would about being an adult when I was a kid. I felt like I fit into my own skin, that everything was right, that no matter where I was I was where I was supposed to be.
It's that simple, I just felt good.
Every year since then, has never measured up. And that bothered me. The best year should have been my gateway into every year being my best year. But for some reason the subsequent years never were. The years after weren't bad, not by any stretch of the imagination. They were full of all the normal things that one fits into one's time. Nothing particularly grand, nothing particularly dreadful, just life in all its amazing glory, ups/downs and everything in between. But I never felt as wonderful as that one year. And I could never figure out why.
The year I was 37, was the worst year of my life, so far. It was Seminole and singular. Unlike most experiences in my life that move me, everything happened. Everything unimagined, unplanned for, unannounced and unwanted happened that year. There was illness, disability, hospitalization, surgery, loss of family, loss of friends, loss of independence, loss of function, loss of job. All the terrible shared experiences that I could point out to you that you could associate with some shared life occurrence that would explain how terrible that year was for me, happened that year. I was in pain every day, every moment of that year.
The thing is, though, 37 wasn't the end and the beginning of the worst time of my life. It had been building for a long time. Each year getting successively worse than the last. About five years ago, the symptoms that would be later diagnosed as my neurological conditions began, my functionality both physically and mentally started to severely deteriorate, the year I was 36 I had a stress and exhaustion induced breakdown, i was diagnosed with my illnesses, and my sister didn't want me at her wedding (though she will always believe the opposite, that I didn't want to be there).
But even these highly charged experiences were not the beginning. The beginning of the worst year of my life, was, in fact, the best year of my life. The year I was 27 was wonderful. The year I was 28 was just a little less so, The year I was 29 was just a bit more wrong than the year before. Each year successively building upon the wrong of the previous year. It was like I was pulling a rubber band. The year 27, the band was completely slack, the next year it was firmly on my thumbs, the year after that it was pulled just a little tighter, and so on, until year 37 when there was simply no more slack. But instead of flinging it away or loosening the grip, it just stayed, poised to break, stretched as far as it could possibly go. Anchored, inexorably, back to that one year.
When I was a child, I hated being a child, everything about it. I can't point to anything at all that I did like about it. I always wanted to be an adult. I always knew that that's where I would thrive. That there would be a moment when I was older where I would be able to smile and exhale and know I belonged, not to anyone else, but to me. The year I was 27, was that moment that I always knew I would experience as a kid. The feeling I had that year was everything I knew it would be growing up. It was that bright idea that I had clung to growing up that would make all the trauma and sadness worth it. That one idea is what got me through feeling suicidal, got me through not eating, got me through the emotional and social torment. The one idea that one day I would get to be myself, I would get to be better.
27 was that childish idea. It was the only thing I wanted growing up, the only thing I needed to know. At the time I couldn't see that. I couldn't see it as the end of a beginning. I saw it only as a wonderful moment that could be replicated ad naseum every year. I couldn't see it for what it was, and because I couldn't see it, I couldn't let it go. Every year that passed I grew more and more puzzled at how I could not seem to recapture it's spirit. Every year my body was pulled farther and farther away by time, while my spirit was forever anchored to it.
August 22nd, the day I turned 38, I woke up, and my surgery pain had all of a sudden gone. It was as if that rubber band had never existed. The overbearing intense mind numbing pain I'd been experiencing for the entirety of the last year had gone. Due to my illnesses I will always have, to a greater or lesser extent, daily pain, it is not that I am referring to. I'm referring to the horrific pain I'd been feeling for over a year that had forced me to stop working full time, induced vomiting, hospitalized me because it was so bad, made me move in with my parents part time because i couldn't take care of myself, etc. It was just...gone. It was done. I'm not ascribing this to some miracle. Science and surgery were responsible for the fix. What science, doctors, medication, etc. cannot be responsible for, is that on August 21st I was in substantial pain from illness and surgery that had occurred on March 31st, and on August 22nd I woke up and the pain was gone. I might always be in pain, but I never have to be in that pain.
It has taken me 2 months to sort this all out. To trace the beginnings of things and the ends. I was probably about 7 when I first fixated on that moment in adulthood. I was 17 when I graduated high school, the figurative, if not numerical beginning of adulthood. I was 27 when I attained that moment I had dreamt of all my life. And I was 37 when I finally let that dream go.
Who you believe you will be, and who you actually become are never the same person. Who you are now is not the same person as who you will be 5 minutes from now, 5 months from now, or 50 years from now. But the chains you lock around yourself when you are one person, trying to dictate when and whether you will be another person can pull your spirit away from all the possibilities you can be. I chained myself at 7 to who I was at 27. The day I woke up at 38, was the first day I was free. It took me 2 months to unravel 10 years, but I get it now. I am no longer chained to that past, to who I thought I was supposed to become, what I was supposed to attain, how I was supposed to feel.
To me, that entire decade, 27 to 37 was all the same year. It simply needed more time to explain itself. It takes me longer than most to adjust to and process my experiences. It apparently takes longer than even I thought. The progress I thought I made since I was 27 has, for a good part, been erased. But I'm not upset, and I don't feel cheated. Life is long. There's room to start over. And that's where i'm left, starting over. What I have come out of the last decade with is very little. I have far fewer friends, poorer health, much less money, no real career to speak of, and precious little in the way of achievements to point to. What I do have, though, a place to call home, food in my belly, a couple people I can call friend, is enough. I'm not sure I could have said that before. It really is, enough. Anything else from here is icing. Anything.
Been thinking. Been tired.
I figured out that the best way to take my medication is to take a xanax with the first excedrin (caffiene & acetamiaphen). And then if it's a bad day, take another xanax after the 3rd excedrin. This actually prolongs the pain medication's effectiveness since the xanax will take care of the muscle tenseness, so the excedrin just needs to work on the pressure and random aches.
I was actually starting to feel better before the last slew of 90 degree weather hit.
The weather in the bay area isn't any better for my head than the weather here. The key is the temperature. If we were having a 75-80 degree normal summer I'd be feeling much better. My decline right now is all to do with the temperature and it's physics associated increase in air pressure than the humidity or anything else.
I'm hopeful the drop in temps this weekend will allow me to be productive enough to do laundry and clean, and maybe putter about the yard.
I encountered the Spoon Theory which is very helpful in explaining why I keep looking at people (or thinking that they have) like they've asked me to grow another head when they ask me to do anything.
I've dipped my toes back into interacting on Facecrack, but still not posting status updates.
Beyond that I'm really tired. Which is frustrating, but i'm getting used to it (the tiredness as well as the frustration).
I'm leaving tomorrow morning, bright and early to visit my former housemates in SF for 5 days.
Technically, the day i come back (Tuesday) will take all day. But this will be my first real vacation in years. No easy access to home, no particular point other than hanging out with friends.
Let's see if i can just relax!
I don't think I can explain how wonderful it is to be around a group of people, even if it is virtually, who get excited when they feel well, to do house work.
I swear, every time someone in the group has a good day, they immediately get happy to be able to clean part of their house. I don't think people without an illness that saps all your energy can understand how great being able to just vaccum, or do dishes, or clean the cat boxes is.
Don't get me wrong, I was a slob before I got this illness, I'll continue to be a slob if it goes into remission. But I was a slob because I was lazy, not because I was physically unable to do the work.
When I got my house I was so excited by nothing more than having a place to putter about for the rest of my existence. It's just really upsetting that right now I can't do that, because if I expend energy on puttering, I lose control of my faculties from fatigue. It's just really nice to be around people who get that.
I don't think I can explain how relieved I feel. I needed the week of xanax as a tool to rewire my thinking about my symptoms. And now, while I still have symptoms of the IIH I still feel so much better.
My problem was never anxiety. My problem was my reaction to my IIH symptoms. I was so completely misinterpreting my symptoms that I was making them worse. Correcting this reaction is making such a huge difference.
Three years ago when I first started having muscle aches around my head and fatigue, it never occured to me that there was a physical reason. Those symptoms were always an indicator of a mental problem. Except my depression wasn't acting up. So I assumed that my brain was getting worse somehow and the symptoms were a result of that. I gravitated to some kind of anxiety issue even though I couldn't pinpoint anything thought-wise that was going on. So every time I'd get tired or start getting achy I'd get up and exercise and try to push through it. That's what made everything worse. My body needed rest and I wasn't giving it any. So I ended up exhausting myself so badly that I did have a hysterical anxiety reaction every few months. Not because I had an anxiety problem, but because I was that exhausted. It's the same reaction that anyone without a mental illness would have had to being exhausted.
For the last week I've been reacting to my muscle aches and my fatique as precursers to headaches. And it's been working like I'm taking a drug. I feel normal for the first time in years. I've been taking more pain relievers and have been tapering off the anxiety meds. I should be off the anxiety meds within the next week and will know for certain after being off them for another week. That's when I'll present everything to my doc and I'm thinking it will make way more sense to her as well.
This all explains why the one anxiety meds seemed to work for a while and then wouldn't. It also explains why the xanax has been helpful. Part of what the anxiety meds to is to relax you. Relaxing my muscles is really helpful, since the IIH makes the muscles around my head (shoulders on up) really tense. So the drugs would work for a while until my body got used to them and then they wouldn't work anymore because they weren't addressing the actual problem. That's why the zoloft stopped working after a year, and why going on to a different med seemed to work for the short term. The xanax works to help my muscle tenseness because part of what it does is completely relax you.
As I've been tapering off the anxiety meds, i've noticed my muscle aches increase. However, I've also noticed that my mental stability hasn't changed. What I was doing before was noticing my muscle tenseness and then starting to worry about why. Then when I couldn't figure out a mental reason I assumed there was something even worse going on and working myself up into such a state that I literally couldn't think beyond the 'what's wrong with my head' obsession. I haven't been worrying about why my muscles are tense, and just been accepting that it's the IIH and I have noticed absolutely zero mental issues coinciding with the tenseness.
I've upped my pain medication (a proper adult dosage of acetaminophen) which takes the edge off the tenseness and fatigue. I'm taking the pain meds more regularly and that seems to help. If i'm having a particularly bad fatigue/ache day i'll take a xanax to relax my muscles (only happened once so far). I'm going to talk to my primary doc about other possibilities than the xanax when I'm too achy. I want to be using the right medicine for my symptoms.
I'm also trying to find ways to relax. Stress is a major trigger of symptoms. My base level stress is slowly going down since I now have a reason for all of this. However, I'm a really tightly wound individual on my best days so finding a way to be less tightly wound so that I have wiggle room in my stress-o-meter would be really helpful. I should be able to have a stressor added in without having a massive headache every time.
I tried a relaxation yoga class on Sunday. Epic fail. It was not relaxing at all, mostly because most of the poses require your head to be hanging down, which makes all of the blood flow into my skull, which just increases the already too much pressure. But' I'm not giving up, i'll try one more yoga class, then i'll try some tai chi or whatever i can find in walking distance. I need a once a week meditative class to help with the stress. So i'm going to try a bit of everything until i hit something that works, that's not competitive and doesn't engage my ego.
This is the point at which I feel like I'm whining (aka. I'm sick of having to think about it therefore everyone else must by tired of hearing me talk about it).
However, I've got to go through the same obsessively ordered internal vetting process that I went through when I originally processed my mental illness to ferret out all the minute details of this illness and how it has impacted my life, and how I have misinterpreted it so that I know how to remap my thinking and reorder my life so that it becomes something so normal for me that I don't have to worry about anything getting to such a point that it becomes an emergency without me being aware of it. I need to learn how to incorporate the little things that my body needs every day in order to a) keep everything in check, and b) be aware when things improve and when they get worse.
The first part of this endeavor is to separate out what I've been misinterpretting as mental illness related symptoms that are actually IIH symptoms. I've never had a body-wide pain/muscle control issue. So when all the symptoms started appearing about 3 years ago, I immediately figured this was mental illness related and acted accordingly. When the symptoms didn't get any better, it never occured to me that there could have been another explanation. I just figured that my mental illness was getting worse for some reason and still kept looking for the reason.
This ended up making things worse. The right course of action to take if the symptoms were mental illness related is the exact opposite course of action to take when the symptoms are caused by the IIH. Symptom caused by the mental illness? regardless of the symptom part of the solution every single time is to get up and get your body moving whether you feel like it or not. Symptom caused by the IIH? regardless of the symptom part of the solution every single time is to rest and not force your body to do more than what it really can do right now whether i want to do more or not.
I have to learn the delicate balancing act between the two now. This is something that my fellow LJers moominmuppet
have had to do for a long time now. I really have always known that it's a really difficult balance to keep. But intellectual understanding is always different from visceral. I really appreciate your support. It means a lot.
The good of all this is that I have a reason now. I'm not really going crazier. I just have another illness that's different to deal with. Knowing this and knowing all the drama related crap that's gone on with regard to me in the last 3 years this is such a relief. My brain not functioning stuff was a result of being so fatigued from the IIH that I literally could not think straight. I kept moving, kept being the Energizer bunny so that my 'mental' illness would get better that I made the fatigue so bad that it was driving me crazy. I think from here on out, my behavior will get a lot better, more stable. I'll be able to go back to expecting to not have a mental episode for years and years. And as a result I'll be able to interact with the general public in a much more normal way and actually increase my friend circle instead of the steady decrease that's happened in the last few years.
That's the ultimate goal. So I'm going to continue to be obsessive about this over the summer so that I can really be on solid footing with everything as quickly as possible. However, I will not move so quickly as to make anything worse.
I'm going to keep a log of everything related to my headaches for a while. I suspect that the anxiety is directly caused by my IIH issues and want to catalog my symptoms when my headaches hit to prove my point.
'Pull on the back of my head' = the feeling that something is squeezing just the back of my head, behind and between the ears, right above where it meets my neck to right below the middle point in the back (where the skull is farthest out). this does not refer to a hallucination that someone is grabbing my head. it is a reference to what it would feel like if there was something that could grab the back of my head.
'Needling at me' = open your hands out, now bring them into a position to mimic a claw, open them out again, claw them again, repeat faster about 10 times. this is the physical expression of what this feels like. this is also incredibly similar in feeling to the 'pull on the back of my head' just internal instead of external
6/4/10 - 2:30 PM I start feeling a 'pull on the back of my head' and/or 'needling at me' feeling. This is where I think my brain is getting confused and is having problems. My first instinct is to assume it's a mental illness pull and to react accordingly. I realize it's happening and instead go into the new fangled IIH mode and expect that it's the start of a headache. I am rewarded in my thinking by getting a headache. The headache comes on very slowly. It starts with the pull at the back and very slowly works up to around my head. The muscles at the front of my face tense up as the pull feeling moves around towards the front. The last thing I feel is the actual headache pain. About the same time the pull starts I start to get tired, at about the same rate as the headache moves. My anxiety is acting up the entire time, however, I'm able to keep it away from the active part of my brain by telling myself that this is being caused by the headache and it will go away once the headache is under control. This tactic works perfectly. I get home at 3:15 and immediately take an Excedrin (caffiene + acetaminaphen) and chill out. At 3:45 the headache ebbs, anxiety seems to have lessened, fatigue is still a problem. This is the point at which I am unsure as how to proceed. I have a history of od'ing on a regular adult dosage of pain medication. However, my headache and associated symptoms are not completely erradicated by one pain pill. Also, it might not matter how many pain pills I take, it could be that there will always be a bit of it lingering until it wants to go away. I believe I will try a half an Excedrin and see if that does anything to help.
4:30 Update - After resting, I got up to go get food. I walked down to Panera to grab something. While waiting for food the headache crept back up the back of my neck to the back of my head and I got nauseous. Nauseous until i got home and sat down.
I think what's bothering me the most about everything that's gone on is that I have this other invisible disease that I can't fully predict. I'm already on constant vigilance mode for my mental illness, so now I have to learn to be constantly vigilant for the IIH. Except there's very little I can be vigilant about. It's going to do what it wants to do and there really is very little I can do about it.
I can, 1) take care of myself physcially, exercise, eat right, etc. and 2) take pain medication more often (just the basic over the counter stuff) even if my headache is low level (this is more for my mental sanity than everything else. i think the low level headache is chipping away at my mental fortitude.)
I just have to let it do what it wants to do and hope it doesn't get any worse. I had a followup with the neurologist yesterday. He told me that my weight was not a factor, that I'm not large enough for it to be. We did a visual field test and I've developed a much larger blind spot in my right eye that wasn't in the previous visual field test. But my optic swelling has gone down, so basically it's monitoring every few months to make sure the swelling is in check and hope my eyes don't get worse.