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.