Handicap Placards and Spaces

Handicap Placards and Spaces 

Handicap placards. Not all spoonies have them, but many - likely a majority - do. But with that placard, that handy little blue parking space that becomes so crucially important to us especially on harder days, comes a lot of myths and expectations from the able bodied world.

People expect those with handicapped placards to look a certain way, or perhaps walk a certain way. They expect them to be in a wheelchair, or have a cane or crutches, or to use a walker, or perhaps to limp or waddle. They expect them more often than not to be older. So when they're confronted with someone who may be younger and who may do none of these things, they instantly assume that you're using a parent or grandparent's placard illegally.

I've seen links circulating on places like Twitter and Facebook about people that have had notes left on their car or people that have been told off for parking in a handicap spot with their own placard because this person didn't fit that angry person's expectation of a disabled individual.

So, if you're an able-bodied individual reading this post, I urge you to read on with your eyes and mind wide open. Because this is something you really need to understand.

There are many, many people out there with handicap placards that appear perfectly healthy. They don't often use assistance devices, though sometimes they may. They don't always limp, though again, sometimes, they may. From the outside, they may look to be just fine and dandy, perfectly able-bodied, and they may seem like they have absolutely no business having that handicap placard that's hanging off of their mirror.

However, that does not mean they are using someone else's placard. That does not mean that this person is an able-bodied individual. That does not mean that they should park in an abled space. For people such as myself, those extra feet between a disabled and abled space can mean the difference between getting everything on a shopping list and skipping the majority and getting only the bare necessities because of the extra walking. This isn't hyperbole. Those few feet make that much of a difference. We don't park in those spots because we're lazy. We don't park there because it's fun, or because we want attention. We park there because we have to. Because we need to. Because if we don't, the next time we go to that store, our shopping list may wind up being twice as long, or we may have to have to ask a friend or family member to go to the store for us to fetch the items we were too exhausted or in too much pain to get for ourselves. Can you imagine, just for a second, what that's like?

"Hello, Jan? I went to the store earlier today, but I just couldn't manage to finish up my list, would you mind picking up six or seven things for me after you get off of work before you go home to your own family/homework/other long list of responsibilities?"

It's never a good feeling to ask someone who you know is tired, themselves, from a long day at work, who has an evening of housework or familial responsibilities or what have you waiting at home for you, to stop at the store that you were just at to get things you couldn't manage to get. You feel so guilty, you feel like you're imposing, you feel like you're being lazy, and you feel so  indebted in ways you know you likely won't get a chance to repay.

It's possible that you may have one or two people that understand what you're going through who would be willing - I say willing there, not necessarily happy, haha - to go that extra mile for you. But for many, that isn't the case. Many spoonies have no choice but to do it all themselves because they are the only people they can count on, because no one else in their circle of friends and in their family gets what they're going through, and nobody understands the fatigue and the pain.

So, in conclusion of that train of thought... those few feet.. can make such an incredible difference in the life of those people. It can make the difference between completing a shopping trip, and feeling like a failure. I know the times I have to call it quits early on a shopping list, I feel like I failed. Like I let my conditions beat me. Logically, I know I shouldn't feel that way, that it's counter-productive. But I do, and I can't help it. I know there are others that feel this way, too.

To those of you out there who are able-bodied and park in handicapped spaces just to be lazy:

Re-read this post. Think it over a minute. Then take a minute to put yourself in the shoes of a spoonie. Think of yourself in a totally exhausted state. I mean ain't-slept-in-days sort of exhausted. Then throw pain in on top of it. Anywhere you please, it's different for everyone. For me, it's my knees, my hips, and my lower back most prominently. Yep, everywhere that sucks the most for walking and standing. My neck and head, too, thanks to my Chiari malformation. So, imagine the tiredness, and then this on top of it:

I have a near constant feeling of aching pressure in the base of my skull that radiates as tension down my neck and into my traps. My back muscles are almost always in knots in spite of being on muscle relaxers, though the lower back is worst for this, and I get random, sharp-shooting pain in my thoracic spine that radiates into my shoulders and arms thanks to degenerative discs, and a firey, electric sort of pain into my behind and down my legs at random called sciatica when my lower back spasms. My hips feel like the sockets of the joints are being ground against with a dull blade every time I take a step, with the occasional stab if I turn funny, and my knees are, no matter how I sit, stand, lay, or walk, in a constant state of aching that never goes away. Prolonged walking and standing makes this aching escalate into a nauseating throbbing, and when I finally sit, it turns into hot pins and needles as the swelling in my knees cuts off circulation from said position change.

This is just on an average day. This isn't even a bad day for me. So I want you to think about that, try to imagine that, and then think about putting someone through that much pain just so you can save yourself a few feet for convenience. For laziness. I save those few feet to save myself from agony, from further exhaustion. I'm not trying to be sanctimonious here, but handicapped spaces are there for the people that NEED them. And we do! There are so, so, SO many people out there worse off than I am! In worse pain, in worse states, that your parking in that spot could potentially even endanger their lives.

So please, able-bodied person, don't park in a handicapped spot, even if you're only going to be a couple of minutes.

Thank you, sincerely, for not parking in a handicap space if you can't legally park there :).

Another Flare or Just Too Much?

Pretty sure I'm hitting a Fibro flare.

The past week or two has been great. I've been getting things done. Cleaning, doing stuff for mom while she's been down the past two months with a pinched nerve in her neck, doing stuff for everyone, kicking ass inside the house, outside of the house, you name it.

The past two days, I've woken up completely exhausted, like I haven't slept at all. Yesterday I had a headache all day for the first time non-cycle related since I reached the top of my topamax titration.

I just can't get moving today. I feel so heavy, like I have weights attached to every part of my body, even my eyelids and face. Even taking a breath is harder than usual. I feel so physically exhausted I don't even have the words to describe it. The pain isn't really there, yet. But if this truly is another flare after my brief remission, I know it will be.

I know I probably overdid it in the two weeks that I was doing so much cleaning and other work. But it was stuff that needed done, and stuff that no one else was physically able to do. Even if it is a flare, though, I can't just stop. With the situation at  home like it is, there's too much that needs done that really is depending on me to do it. Mom still has a pretty long road to recovery ahead of her, I think. Dad's war wounds are bothering him more these days. My brother's own disabilities are really limiting his ability to help out around the house. That's three out of four people eliminated.

They do what they can when they can, sometimes they do more than they should, especially dad these days, but thankfully he's listening when we tell him to stop doing something or to take it easy. I kind of have a household riding on my shoulders at the moment, and it's a heavy load to bear, more so with the level of fatigue I'm feeling right now. I know I need to stop and rest. But I really can't, not a lot anyway. There's too much that needs done. I have to push through, I don't have much of a choice.

The only thing that I know to do now is to pray to God that He will give me the strength I need to get through this and help support my family through these rough times. I don't know why He gave me these disabilities and limitations, why He decided I should have these burdens... I was so very angry with Him for so much of my life because of it. But I'm not anymore. I realize that I can help people because of my problems - I can give them advice on what's worked for me and offer suggestions for things that may help. Whatever His plan is for me, I know my disabilities factor into them somehow. I just have to have faith and perseverance to get through the rough patches - and so far, I always have.

Depression: The Roller Coaster Aspect

A lot of people without depression don't realize that for the majority of us, there's an almost bi-polar aspect to it. No, I'm not saying that it IS bi-polar, or that those with depression are bi-polar, nor am I in any way trivializing or marginalizing bi-polar disorder. I was actually misdiagnosed with bi-polar disorder when a combination of birth control pills and undiagnosed/untreated hypothyroidism had my moods swinging so fast not even I could keep up. (I was very nearly committed at one point during an emotional extreme.)

What I mean by this, is how at one moment, you can be just fine, having a good day, you're happy, laughing, the sun is shining, the birds are chirping, you can hear Louis Armstrong singing in the background. That kind of a good day, you know? Then for no reason, and completely out of the blue, all of that disappears, and your mood goes downhill so fast you'd think it was an avalanche.

 For me, it feels like there's something alive inside of my chest, clawing and chewing away at every good feeling until it leaves an empty hole there. It isn't numb, at least not all the time - there are moments of apathy. But it's just...a very heavy emptiness. Nothing is interesting, nothing is fun, no matter how much it normally is. Sometimes I cry, most times I don't, because it's really not a feeling that, in and of itself, is inherently sad. It's just... a nothing that weighs as much as an elephant, sitting right there in the middle of my chest, and it more often than not evokes this feeling of intense frustration and anger that tends to cause me to lash out at those around me for the stupidest things, though for the most part I've learned how to control that, and my family has learned that, when I'm going through this sort of mental problem, to keep their heads down so to speak.

Then, just as quickly, that low can disappear for the same non-reason as it appeared and it's right back to Louis Armstrong again. Sometimes it can disappear after just a few minutes, sometimes hours, sometimes days, or weeks...months.

The thing is, depression doesn't just present as sadness. It can present as anger, as frustration, as intense apathy, as ennui... there's so many faces that depression wears, and it can change its face so much and so fast, half the time I'm tempted to call it Jaquen H'ghar.

I've developed a lot of coping mechanisms over the years to help deal with these lows. I do something productive, whether it's knitting or sewing, or I clean if I'm physically up to it. If I'm having a really good day, physically, I work out or do something labor intensive. Today, I went out for about two hours and raked leaves. I got about 3/4 of our yard done. I know that doesn't sound like a lot for two hours work, but we live on nearly a half acre, and we have nine oak trees and a birch, as well as a maple in the side yard that often blows leaves into our front yard. Lots. Of. Leaves. I'll eat chocolate and binge-watch my favorite TV shows (usually Supernatural; watching "my boys" battle literal demons and monsters, and their own figurative demons, helps me with my own). But sometimes, those coping mechanisms just don't cut it.

Today has been one of those days. Raking leaves really did help for a couple of hours... but then I started the slide downhill again. Chocolate and Supernatural didn't help, so now I'm watching Doctor Who. I can't really knit, as I'm making myself a scarf, but I'm almost out of one of the yarns I'm using, and I need to get more before I can really do much more work on it. So as it stands, I'm sitting here with that monster clawing at the inside of my chest again and there's nothing that I can do to fend it off.

I could try working out, but after working so hard outside, I'll likely in a fair bit more pain than my normal level tomorrow, any more physical stress and I risk triggering a Fibro Flare that'll last weeks if not months, and right now is not a good time for me to be out of commission. My family needs me physically capable of picking up slack for various reasons, and I can't - no. I WON'T let them down, no matter what.

So, that being the case, I'm at a loss. I have no idea what to do to help pull myself out of this slump, and it seems all I can do is just wait for it to pass. I hope to God it does so soon. I'm fairly certain my antidepressants need increased, and I'll be making an appointment with my doctor or his NP as soon as I can to see to that. I should also, or perhaps, first, get my thyroid levels checked; low thyroid hormones can trigger worsening depression, too.

So, if anyone reading this has depression and experiences the same thing I'm going through... you aren't alone in this. I go through it, and so do many others. We're in this together, even if we're thousands of miles apart. We're fighting this same giant beast that wants to destroy us. I'll always keep fighting, and I have no intentions of letting my story end with 'I gave up.' Some days that's harder than others, but I'm so incredibly fortunate to have the love and support of my wonderful and amazing family and friends behind me. I took them for granted for a long time, but eight months without them made me realize just how lucky I was to have them, and have them so close. I'll never take for granted having them right here with me, fighting the same fight I am - the fight against the pain, the fight against the inner monsters, and the fight against anyone who dare say our pain, be it mental or physical, isn't real, because it damn sure is.

The System Has Made Me A Cynic

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.

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.

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.)

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.

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.

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 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.

Chronic Pain: Why Normal People Can't Understand

The fact is when you have chronic pain, not only is it, in essence, difficult for you to understand - 'Why is this happening to me? What did I do to deserve or cause this?' - it is quite literally impossible for people who don't have it to completely understand.

To normal people, pain is fleeting, it's an annoyance, a temporary inconvenience, and a signal that they have an injury. To us, the word fleeting isn't even in our vocabulary when it comes to pain, it isn't temporary, it rarely stops even with medication, and there is no injury the pain stems from. It's just there. Always.

This is a hard concept for people to grasp, they can't imagine constantly being in pain, especially for no good reason. It's because of this that they're so inclined to minimize or trivialize our pain.

'It can't be that bad, stop being a cry baby.'
'I would love to not have to work and spend all day in bed!'
'Pain is a part of life, get over it. If you just got out more/exercised more you'd be fine.'
'I know someone who has x and they work. You're just being lazy.'

These are a few of many things that I've had said to me. What they don't understand is how severe the pain of chronic illness victims actually is. Some of us have broken bones and not realized it until the swelling and bruising kicked in because we just assume pain is related to our condition. This isn't an exaggeration; we are so conditioned to our level of pain that broken bones are only middling on our pain chart.

That's another thing, too. The pain chart. You know which one I mean, the one at the doctor that has silly faces that are numbered one through ten, and they use it to gauge your pain. The problem is, my 5 may be someone else's 10. My 10 might be someone else's 'I would rather die than experience that.' This is what makes chronic pain so hard for even doctors to treat and understand. They can't gauge our pain because we are so accustomed to it we don't have the same perspective on it that others do.

It's so frustrating, and so disheartening that people would rather minimize our pain than try to understand. They can't understand, not really. But they can try. Trying means so much, it really does, because it means you see and understand that we're sick and in pain, even if it's invisible, even if we have our mask and armor on protecting us with our smiles from the rest of the world. Sometimes just listening when we're complaining can help.

But all in all, the best thing anyone can do is not trivialize the nightmare that is being trapped in a body like this. They can't imagine our pain, and I wouldn't want them to, but just by doing something like acknowledging that this truly is a nightmare, that we are in a living hell, you're taking that trivializing away.

My Little Secret

I have a secret. It's small, to some, but to me, it's my world. People see me smiling and laughing, always ready with a friendly word or an ear to listen. They assume, because of my demeanor, that I'm happy.

My little secret is that, inside? I'm screaming. I don't smile because I'm happy, I smile to protect myself from a world of people who can't, don't, or won't understand. A world of people who say,

"Well, you don't look sick." and "It can't be that bad, you're being a baby, you need to grow up."

 A world of people who assume I'm lazy when in reality I'm fighting a battle they could never imagine.

I have more than one invisible illness. On the outside, most days, I look fine. Some days I limp, others I waddle because I limp on both legs. Some days I need a crutch, and others, the motorized chairs in the stores.

That last one is the hardest. I'm young, and appear healthy, so you can imagine some of the looks I get when I have to use a chair. People seem to assume I'm lazy or that I don't need it, that I should give it to someone who fits their mental picture of what a disabled person looks like. You don't know how hard it is to face those looks if you haven't faced them yourself.

I'll tell you another little secret; I'm glad you can't see how I feel. If you could, you would see a body covered in bruises and burns, wrapped in electrified barbed wire that of its own accord tightens or eases at random, giving a few moments of relief before it erases them with the next wave of sharp, stabbing, shocking pain that doesn't ever fully go away.

I don't know what life without pain is. My journey started at the age of 10 with a whiplash injury. Life got progressively worse from there. I remember waking up when I was 13 and I couldn't feel my legs, it took over an hour for me to be able to get out of bed. Doctor after doctor, test after test, looking like a junkie from the track marks in my arms from the blood draws.
Medications that sometimes helped and sometimes didn't, medications to treat the side effects of medications, I had a small pharmacy on my desk.

Those were my teenage years, and my early 20s. That was, and in many ways, still is my life. Except now, I'm 28. I can't work, my chronic illnesses cost me a marriage after only 8 months. I don't know what a normal life is because I've never had one. Ever. Best of all, according to social security, I'm not disabled. Never mind the two to three inch thick folder of my medical records. Never mind my doctors stating I can't work. I'm young, so I must just be lazy.

The thing is... I would be okay if it was just the pain. But it isn't. The overwhelming fatigue makes everything so much harder, even just sleeping because I wake up feeling as though I haven't slept in days, and it only gets worse as the day progresses until I barely have strength to move. My motor control goes to hell in a hand basket, so just picking things up is a craps shoot as to whether I'm picking it up, dropping it, or throwing it across the room.

What's the point of all of this, you ask? It's a plea. From me to you. If you know someone with a chronic illness, listen to them. Don't just hear, really listen. Learn about their conditions, find out if you can do anything to help, even if it's just being a sounding board for them to vent frustrations to. And last of all... If you should happen to see a healthy looking person in a motor chair, or parked in a handicapped space, please don't assume they're lazy, or healthy, or fine. Because they just might be fighting a battle you can't see.