Sorry it's been so long since I've posted.
I finally, FINALLY, after over a year now since I first filed with the aid of a lawyer.... actually I think it's been over a year since I was denied and subsequently appealed, received a notification from Social Security that I have a hearing date scheduled for January 20th.
While this is, generally speaking, good news, I'm not exactly jumping for joy.
The truth is, I've been living with this horse hockey my body throws at me for 18 years, and in all of that time, every benefit I've ever received from the government - be it local or federal, and really, the only ones I've ever gotten approved on have been local, being foodstamps and, until more recently given the change in laws here, Medicaid - has been fought for tooth and nail. Food stamps weren't as difficult as Medicaid. Getting Medicaid for the first time, I was denied, and had to appeal with assistance from a group that worked through a hospital to help people such as myself.
Now, with the change in laws here, you can't really get Medicaid if you aren't a mother or aren't receiving Social Security benefits.
I've been trying for years now, literally, years, to get Social Security. I've applied and appealed, and applied and appealed again. Every time, I was denied. Every time, they say I'm healthy enough to work. They don't live in this body, they don't live with my brain. How the hell can they know I can work based off of a 10 minute physical exam from a doctor that has no rapport with me, and whatever they decide is worth listening to in medical records, which apparently is nothing at all?
The system here really isn't at all fair. I would honestly love to work. I really would. But it's just not a realistic undertaking. Employers don't want someone who will be erratic in their availability, and who has so many doctor-ordered restrictions.
The appeal hearing will be different in the sense that I will be able to speak for myself, I'll be able to offer my side of the story, they'll have a face to go with all of that paperwork, and they can get more insight other than just what's written down. In spite of that though... I just can't muster any real optimism. I can't.
Those of you reading this that know me well, you know how big of a deal that is. I'm forever the optimist, the positive one, the everything happens for a reason type. But this? I just feel like it's a higher step to stand on before I get knocked down to the bottom of the stairwell again.
You're probably wondering why I even bothered trying if I don't think I'm going to win. The truth is... I'm trying because I have to. Because I don't really have any other choice or any other options available to me at this point in time. I have to keep fighting, even if it's a futile battle, and hope that maybe sometime, somewhere down the line, someone will hear my voice over the din and actually listen and understand.
Who knows, that may even be this judge that I see in January. I doubt it. But, maybe.
The thing is, all of these denials, all of these hoops I've had to jump through for every little scrap the government wants to give me... it's sucked the positivity and optimism out of me when it comes to anything related to things like that. It's just... I'm going 'well, I may as well do it, I've got nothing better to do, right?'
I know that sort of attitude won't help. I know that sort of energy won't help. But I literally cannot help it. I try to have faith that it'll work out, and I pray constantly that it will, but there's only so many times I can get kicked in the teeth before I start putting my hands up before the boot can reach me.
Thursday, November 5, 2015
Thursday, October 1, 2015
The Trouble with Body Temperature
(Note: Temperature measurements are in Fahrenheit)
One thing many people don't know is people with chronic illnesses like Lupus, Fibromyalgia, and Hypothyroidism tend to have abnormal body temperatures. Some may run a 1-2 degree higher-than-normal body temperature, but more often than not, our bodies run cold, unless we're having a flare at which point they tend to elevate, or, of course, unless we're sick.
My normal body temperature hovers between 96.8 and 97.2 degrees. The only time I run a "normal" temperature is when I'm having a flare. Then it's right back down again. The issue is, however, when I'm sick, if my temperature is over 99, I'm running a fever. 100-101 for people who run a 98.6 temperature is considered a low-grade fever; that's a 1.4-2.4 degree difference. At 96.8, 99 is a 2.2 degree difference, and at 97.2, it's a 1.8 degree difference. So while 99 isn't considered any form of a fever in the average person, it is for me. When I hit 100-101, I'm in intermediate fever range, and if I hit 102+ I'm in high grade fever range. It's just how my body functions and a tip-off as to how severe my infection actually is.
The problem with this, however, is the fact many doctors will shrug off a 99 degree temperature as a 'fever.' They'll definitely shrug off a 98.6. I'm fortunate in the fact that I see my doctor often enough that they have a long record of my body temperatures. They see that I run cold, so when I came in the other day and I was running 99, the nurse actually said, 'You have a mild fever today.' I swear, my jaw almost hit the floor. I was not expecting that. But it made me immensely happy.
This is the value of finding a doctor that you can trust, that cares and knows you and your history, and has good people working in their office that pay attention. They're hard to find, God knows. I went through so many doctors for so long, and all of them ran so many tests on me, I looked like a junkie from the track marks on my arms (not hyperbole, it was horrible... I would actually get suspicious looks from security guards and police officers at the college I was at, at the time) and the ones that didn't know what to do with the results just threw pills at me that either did nothing or had side effects that were so terrible I had to stop taking the medications, at which point they would get frustrated and give up.
I wouldn't give up the doctor I have now for the world.
As it stands now, I'm sick, and I'm running a temp of 99.6. If I'm the same or any worse in the morning, I'm going to give his office a call and see if he wants me to come in.
My recommendation to any of you reading this who have abnormal temperatures but have difficulty getting it through to your doctor: Keep a temperature record. Keep a thermometer by your bed and take your temperature before you get out of bed in the morning, and write it down - time, date, temperature, every day, and show it to them. Doctors only see your vitals when you're in the office; if you have something that's different when you're not there, whether it's your temperature or your blood pressure, make an at-home log. Be an active part of your own health care, and you'll make headway. I promise.
One thing many people don't know is people with chronic illnesses like Lupus, Fibromyalgia, and Hypothyroidism tend to have abnormal body temperatures. Some may run a 1-2 degree higher-than-normal body temperature, but more often than not, our bodies run cold, unless we're having a flare at which point they tend to elevate, or, of course, unless we're sick.
My normal body temperature hovers between 96.8 and 97.2 degrees. The only time I run a "normal" temperature is when I'm having a flare. Then it's right back down again. The issue is, however, when I'm sick, if my temperature is over 99, I'm running a fever. 100-101 for people who run a 98.6 temperature is considered a low-grade fever; that's a 1.4-2.4 degree difference. At 96.8, 99 is a 2.2 degree difference, and at 97.2, it's a 1.8 degree difference. So while 99 isn't considered any form of a fever in the average person, it is for me. When I hit 100-101, I'm in intermediate fever range, and if I hit 102+ I'm in high grade fever range. It's just how my body functions and a tip-off as to how severe my infection actually is.
The problem with this, however, is the fact many doctors will shrug off a 99 degree temperature as a 'fever.' They'll definitely shrug off a 98.6. I'm fortunate in the fact that I see my doctor often enough that they have a long record of my body temperatures. They see that I run cold, so when I came in the other day and I was running 99, the nurse actually said, 'You have a mild fever today.' I swear, my jaw almost hit the floor. I was not expecting that. But it made me immensely happy.
This is the value of finding a doctor that you can trust, that cares and knows you and your history, and has good people working in their office that pay attention. They're hard to find, God knows. I went through so many doctors for so long, and all of them ran so many tests on me, I looked like a junkie from the track marks on my arms (not hyperbole, it was horrible... I would actually get suspicious looks from security guards and police officers at the college I was at, at the time) and the ones that didn't know what to do with the results just threw pills at me that either did nothing or had side effects that were so terrible I had to stop taking the medications, at which point they would get frustrated and give up.
I wouldn't give up the doctor I have now for the world.
As it stands now, I'm sick, and I'm running a temp of 99.6. If I'm the same or any worse in the morning, I'm going to give his office a call and see if he wants me to come in.
My recommendation to any of you reading this who have abnormal temperatures but have difficulty getting it through to your doctor: Keep a temperature record. Keep a thermometer by your bed and take your temperature before you get out of bed in the morning, and write it down - time, date, temperature, every day, and show it to them. Doctors only see your vitals when you're in the office; if you have something that's different when you're not there, whether it's your temperature or your blood pressure, make an at-home log. Be an active part of your own health care, and you'll make headway. I promise.
Monday, August 3, 2015
Growing Up Chronically Ill
I started having chronic pain at the age of ten, thanks to a whiplash injury triggering the onset of Fibromyalgia. Chronic pain became a fact of life for me; needless to say, I kind of grew up pretty quickly because of it. I have no recollection of what it’s like to be a ‘normal kid’ or a ‘normal teen.’
At the age of 7, I was pulled out of public school for home schooling - my immune system was crap; I attended one more day in the first semester of first grade than I was out sick, if that gives you an idea. So, I had very little socialization with kids my own age, and at 16 I went to an adult education facility to work towards my diploma as opposed to a GED. Around here, that basically means I was suddenly thrown into a crowd of dropouts and people that were expelled - generally not a good crowd. That went about like you’d expect, and I wound up, after legal trouble, getting my GED.
Now, I told you that story to tell you this one.
I’ve worked two jobs in my whole life. Just two. The longest one lasted about two months, and even that had multiple call-offs which lead to my being fired, the shortest one lasted a week because, hello crap immune system, I got sick, and had to call off multiple days in a row thanks to not being able to talk (it was a call center job.) Boom, fired.
I’m now 28. No job experience, extremely limited in what I can do for work - by doctor’s verification and where applicable, orders, I can’t sit for very long, or stand for very long(15-30 minutes). I can’t lift anything over about 15 pounds, I can’t squat habitually, I can’t kneel, I can’t climb ladders or stairs. All of these things are detrimental to my health. I also can’t look down or look up for extended periods due to what’s called a Chiari Malformation - a part of my skull didn't form right and a small part of my brain, the cerebellar tonsils, have herniated down into my neck. Bending my head down or leaning it up applies pressure and tension in this area and triggers extreme migraines as well as other neurological symptoms.
I have Reynaud’s Syndrome which causes my hands and feet to randomly go ice cold, blue purple and black, or sometimes bloodless white, and be completely numb. As if the Chiari didn't cause me issues with my grip let’s throw that in there too. If I worked a desk job, they’d need extra insurance against people having their eyes put out with the pencils and pens I would accidentally throw when trying to pick them up - although I don’t think there are many insurance policies that cover ‘pencil in the eye.’
I have arthritis in my knees, degenerative disc disease in my thoracic spine, scoliosis, the list goes on.
Take all of this into consideration, and please, if you have ANY ideas… tell me what the hell I’m supposed to do for work. Because according to FSSA and the government? I’m not disabled. There are jobs out there I can do! WHO THE HELL IS GOING TO HIRE SOMEONE WHO IS GOING TO CALL OFF ANYWHERE FROM ONE TO TWELVE TIMES A MONTH?! AT RANDOM?! AFTER BEING FINE THE DAY BEFORE?!
Do you see my issue here? Do you see why I’m so continually pissed at the government for making me fight so hard for disability? The state government for taking my food stamps because I’m not working 30 hours a week?
This has been my life since forever, only it’s been getting progressively worse. I have very little self worth because hey what the hell am I contributing to anything? I can’t even earn my keep, I can’t even contribute the $200 a month from food stamps to cover my food in lieu of rent to my parents!
How in God’s name am I supposed to feel anything but utterly terrible about myself about things that aren't even my fault when my government is telling me I can do things that I can’t do? That I've never been able to do! I can’t even provide the necessities of life to myself! Everything I have my parents have bought for me - my food, my clothes, my phone, my furniture (except my bedroom set that I inherited from my grandmother). There are things that I literally need to try to improve my quality of life that I can’t get because I don’t have the money and neither do they!
I just don’t understand how the government can look at the 2″ and change stack of medical records and tell me I can work, tell me I’m just being lazy, tell me I’m not worth the barely-able-to-be-lived-on monthly stipend they would give me.
I also don’t understand how they don’t understand what that does to me. It makes me question my own sanity, whether I really am just crazy, that maybe all of this pain that I’ve lived with for 18 years is all in my head and I’m just screwed up enough to believe it’s real and if I just snapped out of it everything would be okay. But God I know that’s not true. I do. It just. I can’t. I don’t know what to do anymore. I’m in tears as I’m writing this because it just hurts so much. I don’t know what life is. I don’t.Because I've never had the opportunity to really live it.
And I don’t know how to deal with that, either.
(P.S. I apologize for the somewhat disjointed A-to-Q-to-C nature of this post, my brain is just as much all over the place as this post.)
Thursday, July 30, 2015
Being a Long Term Chronic Illness Patient: Why I Have Trouble Relating
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.
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.
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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