As I've mentioned in previous posts (I think), my chronic pain started after a whiplash injury when I was ten. I honestly don't remember much of my life before that - just bits and pieces. I mean, I was ten 18 years ago! That's a fair bit of water under the bridge. So when I see posts from newly diagnosed CI patients, talking about what's changed or what they've lost, I have so much difficulty truly relating to them, because I never had any of that to lose.
I don't know what it's like to have a career, or even a part time job save for the few failed attempts I made. I don't know what it's like to be able to complete further education - both times I went to college, I had to drop out. I didn't feel like I lost anything, it just felt like business as usual. I'm so used to my chronic illnesses and pain getting in the way of everything that when it does, most of the time I don't even blink.
That doesn't mean I won't listen, that I won't try to understand, because I always will. It's just hard for me to understand people losing things I never had. I suppose to a degree I've become complacent. I expect it to get in the way, it gets in the way, I move on. Don't get me wrong, it's unbearably frustrating at times, and it's always hurtful when people get offended or angry when I have to cancel plans... but, I don't have that deep sense of loss that so many of you do.
I don't know if that makes me fortunate or not.
To an extent, I understand I've missed out on a lot of fundamental aspects of life, and that to a degree, the fact I don't know how to properly adult at the age of 28 is a result of that. I've had my own struggles, I've had my own disappointments.. but.. I've come to accept my illnesses as a fact of life, and I see them as a way to help others. I've had so much experience under my belt, learning how to cope, learning what works for me, what medications are good and what medications have side effects that far outweigh the benefits, home remedies for various aches, pains and other woes, that when someone asks 'do you know of anything to try for x? It's driving me crazy!' I usually have a suggestion or two to offer. I can also offer them a person they can vent to about their pain and about the lack of understanding of able-bodied people, because I get it.
I'm honestly okay with that. If being that person, the person people come to for advice or to act as a soundboard, is who I'm meant to be, I'm good with it, because even though what I do may not have value or worth to some, if I can help even one person, it's all been worth it.
Thursday, July 30, 2015
The Parts of Depression No One Tells You About
I think honestly one of the hardest parts of depression is the overwhelming self-deprecation. There have been so many times I go to make a post on Facebook or Twitter, or something of the like, and I delete everything I've typed thinking, 'No one cares. Who wants to hear you whine? God, stop being such a pain.' I always feel like even mentioning my depression, or my chronic pain, to anyone save one or two people is just unnecessary whining, like they're just listening to be polite, or sitting there silently hoping I'll shut up.
It's a very lonely feeling, even if you know, logically, that it isn't true, that people do care, that people do want to help and to listen... it doesn't matter. Because logic plays no part in depression.
No one ever told me how overwhelmingly isolated and lonely I'd feel, I never heard about how instead of crying and feeling sad all the time like I always thought depression would be... that more often it's this heavy, incredibly empty feeling that feels like an invisible weight in the center of your chest that's threatening to consume you and everything you love and enjoy. No one ever told me that I'd constantly feel like a burden, or that I wasn't good enough, or that I'd outright hate myself at times just because of who I am and because of things outside of my control. No one ever told me that the good days would be great, but that sometimes those days would make the bad ones seem even worse because people don't understand that just because you were fine the day before doesn't mean you'll be fine the next. No one ever told me that the days my pain was at its worst, I tended to be at my emotional best, because at least then I was feeling something, even if it hurt.
There are so many things that I never knew until my depression escalated. I never realized that I took for granted the simple act of enjoying something I'm doing, rather than just sitting there doing it to pass the time. I also never realized how much this monster in my mind would effect my self-worth - of which I have very little at times, or my relationships with friends and family. How much I'd want to just completely isolate myself and hide myself away because the world beyond my little sanctuary makes me feel more alone and without value than ever. What value does society place on someone who can't work? Not much.
As far as romantic relationships go, I honestly stopped even trying... who wants someone that they'd have to take care of, that's both physically disabled and dealing with depression? At least that's been my thought on it. I don't know, maybe I'm way off. Maybe I'm not. I honestly have no idea.
No one ever talks about how much of your life depression will get into, how many things it'll tear apart and break down, how much it'll hurt, and how often you'll just become completely numb where you stop feeling and stop caring about anything.
Maybe they should start.
It's a very lonely feeling, even if you know, logically, that it isn't true, that people do care, that people do want to help and to listen... it doesn't matter. Because logic plays no part in depression.
No one ever told me how overwhelmingly isolated and lonely I'd feel, I never heard about how instead of crying and feeling sad all the time like I always thought depression would be... that more often it's this heavy, incredibly empty feeling that feels like an invisible weight in the center of your chest that's threatening to consume you and everything you love and enjoy. No one ever told me that I'd constantly feel like a burden, or that I wasn't good enough, or that I'd outright hate myself at times just because of who I am and because of things outside of my control. No one ever told me that the good days would be great, but that sometimes those days would make the bad ones seem even worse because people don't understand that just because you were fine the day before doesn't mean you'll be fine the next. No one ever told me that the days my pain was at its worst, I tended to be at my emotional best, because at least then I was feeling something, even if it hurt.
There are so many things that I never knew until my depression escalated. I never realized that I took for granted the simple act of enjoying something I'm doing, rather than just sitting there doing it to pass the time. I also never realized how much this monster in my mind would effect my self-worth - of which I have very little at times, or my relationships with friends and family. How much I'd want to just completely isolate myself and hide myself away because the world beyond my little sanctuary makes me feel more alone and without value than ever. What value does society place on someone who can't work? Not much.
As far as romantic relationships go, I honestly stopped even trying... who wants someone that they'd have to take care of, that's both physically disabled and dealing with depression? At least that's been my thought on it. I don't know, maybe I'm way off. Maybe I'm not. I honestly have no idea.
No one ever talks about how much of your life depression will get into, how many things it'll tear apart and break down, how much it'll hurt, and how often you'll just become completely numb where you stop feeling and stop caring about anything.
Maybe they should start.
Wednesday, July 29, 2015
Chiari Migraines & Other Things
I don't know how many of you have a Chiari Malformation - I know something like 1:1000 people have it. I'm fortunate in the fact I have a Type 1 Malformation; the herniation of my cerebellar tonsils isn't as severe as it could be, but I'm also highly symptomatic. I deal with neurological issues in my arms and legs (nothing like throwing an object you went to pick up), extremely painful, light-and-sound sensitive migraines, the works. The migraines can last anywhere from a day to a week or more. Sometimes after a week long migraine I'll get one day of reprieve, and boom, here comes another one.
The irritating thing about Chiari migraines is the fact that there is very little to do about them. I've tried different pillows, different medications, applications of heat or cold, nothing seems to fully treat or prevent them. I'm finally starting to come out of a migraine that was so severe the idea of drilling burr holes in my head to ease the pressure with my dad's power drill was highly appealing. The slightest sound was deafening, the tiniest light excruciating. I couldn't let anything touch my head without intense pain.
Even without having Fibro, without having IBS, CFS, Hypothyroid, HMS(Hypermobility syndrome), depression... the Chiari Malformation would be more than enough to knock me on my ass on the regular. And these government people keep telling me I can work? I can't even shower every day! I can't even EAT every day! Hell, I don't even get to sleep every day no matter how crippling the fatigue and exhaustion is.
I would love to have these people hooked up to one of those simulated pain machines while being kept awake for 3-4 days to simulate the fatigue, mental confusion, brain fog, and exhaustion so they can get an idea of what it's like for us Spoonies to try to do anything. They have so little empathy, and so little sympathy. It isn't entirely their fault I know. To normal people, pain is temporary. But how can they sit there and ignore the doctors saying I can't work? The thick medical files showing my symptoms, their progression, the limitations of my condition..? I don't understand. It's so frustrating, and so disheartening at times. Invisible illnesses are always difficult to bear, because to the rest of the world, we seem fine.
I'll always keep fighting, though - fighting to accomplish things, fighting to be seen and heard, fighting for understanding, fighting my depression - because the day I stop fighting is the day this myriad of acronyms I've collected wins. I'll never let that happen; not as long as I have the will, the ability, and the strength to do anything about it.
The irritating thing about Chiari migraines is the fact that there is very little to do about them. I've tried different pillows, different medications, applications of heat or cold, nothing seems to fully treat or prevent them. I'm finally starting to come out of a migraine that was so severe the idea of drilling burr holes in my head to ease the pressure with my dad's power drill was highly appealing. The slightest sound was deafening, the tiniest light excruciating. I couldn't let anything touch my head without intense pain.
Even without having Fibro, without having IBS, CFS, Hypothyroid, HMS(Hypermobility syndrome), depression... the Chiari Malformation would be more than enough to knock me on my ass on the regular. And these government people keep telling me I can work? I can't even shower every day! I can't even EAT every day! Hell, I don't even get to sleep every day no matter how crippling the fatigue and exhaustion is.
I would love to have these people hooked up to one of those simulated pain machines while being kept awake for 3-4 days to simulate the fatigue, mental confusion, brain fog, and exhaustion so they can get an idea of what it's like for us Spoonies to try to do anything. They have so little empathy, and so little sympathy. It isn't entirely their fault I know. To normal people, pain is temporary. But how can they sit there and ignore the doctors saying I can't work? The thick medical files showing my symptoms, their progression, the limitations of my condition..? I don't understand. It's so frustrating, and so disheartening at times. Invisible illnesses are always difficult to bear, because to the rest of the world, we seem fine.
I'll always keep fighting, though - fighting to accomplish things, fighting to be seen and heard, fighting for understanding, fighting my depression - because the day I stop fighting is the day this myriad of acronyms I've collected wins. I'll never let that happen; not as long as I have the will, the ability, and the strength to do anything about it.
Saturday, July 25, 2015
The Woes of Medication Schedules and Sleep Disorders
I have to wonder if people that don't have conditions that cause sleep disorders, people without chronic illness, doctors, pharmacists, and those who develop medications realize how difficult it is to try to take your medication as directed when your sleep schedule is completely random. For instance; I take my 'AM medications' - including my thyroid medication and a 12 hour BP medication- at 9 in the morning, and have an alarm set for this purpose. I take my 'bedtime' medications at 9 at night - which includes another BP pill and a medication said to 'take at bedtime.'
Now, the thyroid medication is supposed to be taken on an empty stomach, and the 'bedtime' medication I believe is meant to help me get to sleep as well as its intended purpose of alleviating nerve pain. Fantastic.
But the problem is, sometimes I'm just getting to sleep at 9 AM, and just waking up, or having recently woken up, at 9 PM. If I were to take the thyroid pill on an empty stomach in that case, I'd have to go 8 waking hours (as that's generally the recommended time for an 'empty stomach') without a bite of food, and I'm hypoglycemic. Not happening. Then for the bedtime medication, it makes me groggy for several hours after I take it, regardless of caffeine intake.
This makes it so ridiculously frustrating for me. I know the thyroid medication is most effective on an empty stomach but I can't go that long without food, and even though the bedtime medication does make me groggy, I can't get back to sleep - God knows I wish I could.
Sometimes I honestly will lie in bed trying to sleep for 5-6 hours, crying half of the time out of frustration. 'Why can't I just be at least remotely normal?' I'll ask myself, and I honestly have no good answer other than 'You lost the genetic lottery.'
My schedule is so ridiculously erratic. Some nights/days, I'm lucky if I manage 4 hours of sleep after a 24+ hour stretch of being awake, only to repeat the same span of time or longer of being awake. Typically at that point when I can sleep, I'll sleep anywhere from 9 to 16 hours, only to then be awake another 24-48, and sleep 6. You get the picture.
It isn't that I'm not actively trying to sleep during those long stints. It isn't that I haven't tried taking things to help me sleep; I've tried Melatonin, Valerian, sometimes both at once on top of my bedtime medications, which while it does make me ridiculously groggy like I'm in a lucid dream, I can never actually sleep. It's like my brain just makes up its mind to hop around like a rabbit on speed no matter what I throw at it, and it's dragging me along for the ride, the sleep deprivation and exhaustion causing my Fibromyalgia and numerous other conditions to worsen in response, so not only am I bordering on catatonic half of the time, I'm in fairly severe pain on top of it.
I don't know how many of you reading this - if any of you - can relate, but I hope someone that reads this does, so that you know you aren't alone. Sometimes that's the hardest part; that feeling of isolation and loneliness that you're the only one dealing with something. I'm here to say that you aren't, and I hope by sharing my own struggles here, that I've helped you, even a tiny bit. Feel free to share your stories with me in the comments on any of my posts; I'd love to hear them.
Now, the thyroid medication is supposed to be taken on an empty stomach, and the 'bedtime' medication I believe is meant to help me get to sleep as well as its intended purpose of alleviating nerve pain. Fantastic.
But the problem is, sometimes I'm just getting to sleep at 9 AM, and just waking up, or having recently woken up, at 9 PM. If I were to take the thyroid pill on an empty stomach in that case, I'd have to go 8 waking hours (as that's generally the recommended time for an 'empty stomach') without a bite of food, and I'm hypoglycemic. Not happening. Then for the bedtime medication, it makes me groggy for several hours after I take it, regardless of caffeine intake.
This makes it so ridiculously frustrating for me. I know the thyroid medication is most effective on an empty stomach but I can't go that long without food, and even though the bedtime medication does make me groggy, I can't get back to sleep - God knows I wish I could.
Sometimes I honestly will lie in bed trying to sleep for 5-6 hours, crying half of the time out of frustration. 'Why can't I just be at least remotely normal?' I'll ask myself, and I honestly have no good answer other than 'You lost the genetic lottery.'
My schedule is so ridiculously erratic. Some nights/days, I'm lucky if I manage 4 hours of sleep after a 24+ hour stretch of being awake, only to repeat the same span of time or longer of being awake. Typically at that point when I can sleep, I'll sleep anywhere from 9 to 16 hours, only to then be awake another 24-48, and sleep 6. You get the picture.
It isn't that I'm not actively trying to sleep during those long stints. It isn't that I haven't tried taking things to help me sleep; I've tried Melatonin, Valerian, sometimes both at once on top of my bedtime medications, which while it does make me ridiculously groggy like I'm in a lucid dream, I can never actually sleep. It's like my brain just makes up its mind to hop around like a rabbit on speed no matter what I throw at it, and it's dragging me along for the ride, the sleep deprivation and exhaustion causing my Fibromyalgia and numerous other conditions to worsen in response, so not only am I bordering on catatonic half of the time, I'm in fairly severe pain on top of it.
I don't know how many of you reading this - if any of you - can relate, but I hope someone that reads this does, so that you know you aren't alone. Sometimes that's the hardest part; that feeling of isolation and loneliness that you're the only one dealing with something. I'm here to say that you aren't, and I hope by sharing my own struggles here, that I've helped you, even a tiny bit. Feel free to share your stories with me in the comments on any of my posts; I'd love to hear them.
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