Just call me Jiji

…me, just pretending to be me ….now, where did I put that cape??

My Superpower is Invisibility

When people pick the power of invisibility as the superpower they would most like to have, I am dumbfounded!

I am dumbfounded because I have that power and it really sucks!

I have invisible disabilities.

For those of you who are new to the term;  invisible disabilities ,as defined by the Invisible Disabilities Association (IDA), refers to such symptoms as debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions and mental disorders, as well as hearing and vision impairments.  These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.

Someone can have invisible disabilities whether or not they also have a visible impairment or use an assistive device such as a wheelchair, walker or cane. For example, whether or not a person utilizes an assistive device, if they are debilitated by such symptoms as described above, they have invisible disabilities.  (click What is an Invisible Disability?  for more).

My invisible disabilities include every one of the symptoms mentioned above. And it sucks. BIG TIME!  Especially when they hit me all at once.

But wait, there is more…

There are other symptoms that are not mentioned….

..Feelings of incompetency, self-loathing, worthlessness, loneliness, guilt, frustration; feelings of being forever misunderstood, and more…

Those are currently, my additional symptoms, at least.

I seem to be going through something right now. I don’t know what it is exactly, but something is happening to me. I have been “OFF” for the lack of a better word, for a few weeks, longer even; it’s just that it seems to be all rushing at me at a faster pace now.

I’ve been having these feelings of being out of control.

.. Out of control of my life – my health, both mentally and physically, my routines, my emotions, my daily living even. I feel as if I am not functioning properly or normally at all anymore.

My standard go to has always been… “Oh it must be my fibro”; “after all it is the change of seasons”; and “don’t I always have a tough time transitioning at this time of year when things get so busy?”  (-yes that is me talking to myself)

But this is different. Something is different – yet strangely familiar.

One of my major complaints is how I a have been increasingly and incredibly more forgetful; I mean scary forgetful. In the last 2 months, I can point to several instances ~ like making plans with a friend to meet up and then forgetting about it within the hour, having an important meeting scheduled in my own home, with Leon’s behavioral therapist and answering the door in my pajamas because I completely forgot about it, even though I had just confirmed it the night before, having whole phone conversations with someone and forgetting that I spoke to them, taking my meds and then forgetting if I did or not (..okay so that’s and old one), going to my doctor –to discuss this very problem, as well as get the flu shot, and at the end of the appointment when he says okay; “ now go downstairs to the lab, for the blood tests and I will call you with the results”, I respond with, “okay, is that where I will get my flu shot as well?”, and he responds, “Jill, I just gave you the flu shot, you have a band-aid right there on your arm, don’t you remember?” …..umm no, no I didn’t remember. That it just one example of how I am forgetting, from one moment to the next.

Then there are the days were I really just can’t get my act together. One little thing happens and I am thrown off all together. Last week I spent an hour looking for a sippy cup that had the very last drop of milk in it for Kiera. No exaggeration, I was running around the house like a chicken without a head, looking for this damn sippy cup that I had just poured, which in the end turned up in the crib with her, yet I don’t remember ever giving it to her. And while I am crazily looking for the cup I am doing a million other things, or at least I am trying to. My fatigue has been increasing too lately, so while in the mitts of trying to get things done I have to sit or lie down and rest my body and my addled brain, every so often. I just can’t seem to focus on any one task. I am all over the place, so much so that I finally remember to take my medicine, and it’s not until after I throw them to the back of my throat and just start to pour the water into my mouth that it dawns on me that –whoa, whoa, whoa, wait a minute, something doesn’t feel right; were those my pills that I just popped into my mouth? Or were they Leon’s?  Pa-Tooey I spit them out and sure enough they were Leon’s. Crap! Instead of taking my two cymbalta and one lyrica, I almost swallowed two concerta and one clonodine –SCARY!!!

And somehow stuff like this keeps happening, not as serious – or as dangerous as all that, but concerning none the less.

I go through my days feeling all discombobulated and completely out of sync. Nothing seems to fit right.  

So what is it? Is it the fibro getting worse with age? Is it hormones? Am I premenstrual? IS IT ADHD…? Is it all of the above?

The more info I get on my son’s disorder the more insight I am getting about myself! This is not unusual by any means. I see in Leon all the things that I did and went through as a child (only without the right tools or coping mechanisms); I see and relive the frustration of it all. When I say I know how he feels, I really, really do. I see so much of me in him, and I see so much of his ADHD in me, then and now. –AHA! So THAT explains it!

  These feelings of incompetency that I have been feeling lately are not all together new either. They feel like growing pains. Growing pains that I felt back in high school.

I’ve been feeling that A LOT lately.

These old feelings of being incompetent or like I’m a “Fuck up”, which was my choice of words back then, like I just cannot fit in no matter what I do, like I just never ever can get anything right, like people think I am a complete ditz because I can never really retain any info or because I forget things a lot (like make plans and then get sidetracked too easily or forget them all together). My lack of ability to train my focus on one thing makes me look careless and scatterbrained, messy even. I can’t get it together enough to keep a clean house without clutter everywhere you look. I feel stupid, and awkward and like my life is not my own, I am not in control of it.

I can look back and say, that while some of those feelings, back then, were your standard run of the mill growing pains, but most of them were and is ADHD.

My blood tests showed no Lyme disease, low vitamin D, and some other medical gibberish that I didn’t understand, basically they are normal. It ruled out other possibilities and I am now being treated for ADHD with Strattera.  Well, in theory anyway, I’ve been putting off starting it because the side effects are scary ugly and I want to do it at a time when I don’t have a lot of ‘other’ things going on and I can deal with them more easily. –yeah good luck with that.

What does all this have to do with invisible disabilities?

Both Fibromyalgia and ADHD are invisible to the naked eye. You cannot look at me and see that I have these dysfunctions. When I am in pain you can’t see it. When I can’t concentrate on the words coming from your mouth you can’t see it. When I am feeling weak or fatigued you can’t see it.   

And with that, the invisibility of it all also comes those feelings. Feelings of incompetency, self-loathing, worthlessness, loneliness, frustration; emotionally instability; feelings of being forever misunderstood, and feelings of guilt.

They affect my mood, my relationships, and my ability to function “normally” out in the world and at home.

Out in the world – I worry about my relationships with my friends, especially the newer ones. What do they see? What do they think? With all these changes that I seem to be going through right now is it easier to just step away from me? – Can you tell I am feeling a little insecure?

I know my lifelong friend and family will always be around no matter how cuckoo I get. But lately I feel as if some of my other friends might be withdrawing. It is probably just my imagination.  But I have felt more left out as of late –Ahh, feels High School all over again

With  majority of my friendships being with women of girls, it is only natural that they get together more often with their girls and Leon being a boy isn’t invited and therefore I don’t get spend that time out with my friends either. They talk openly about their plans, and I enjoy hearing about what’s going on with the kids. But I’d be lying if I said I don’t feel a bit of envy. Especially when plans are made without the kids, and I am not even asked.  It’s really not a big deal, normally this type of thing really would not bother me, but I am not feeling all that normal right not – at least not what is normal for me anyway. I am just feeling very self conscious – more so lately because, as I am feeling more and more out of sync, I just know I must be coming across as flighty and unreliable and lazy.  Face it my life is becoming this huge mess and I can’t seem to get it together enough to clean it up. If my inability to pull myself together because of my fibro and ADHD is being misinterpreted as me just being a loser, then it’s no wonder I feel misunderstood, and lonely. It’s no wonder that I feel like a loser.

At home – my house is never clean, there is always clutter everywhere, and boxes, always boxes. Storage boxes, for The Kids Kloset, Halloween, presents to be wrapped, decorations to be put up, decorations to be put away, old photos to sort, etc, etc. There always seem to be a parade of boxes in and out of the house, and always smack dab in the middle of my kitchen. We get rid of one and the next one comes in. It’s ugly and it’s messy, and always in the way. Worse than boxes is the paper work, papers everywhere – some in boxes even that I just can’t get to. I feel as if I just can’t keep up with any of it. By the end of the day I am too spent to cook, or pack up the day, or even talk; breathing is the most I can handle.

 Ron tells me it’s because I have too many things going on, like taking care of Leon, the babysitting, PTA volunteering, and getting ready for the holidays or some other project.

I am a mom, I take care of my child, we have our challenges of course, but every parent faces challenges, whether it be chauffeuring them from one activity to another or from one therapy session to another; I babysit, that is my job, that is how I make my money, it helps us afford some of the little (very little) extras in our lives; I volunteer with the PTA, it keeps me connected to Leon’s school and gives me a social outlet; and getting ready for the holidays (or any other event whether it be a trip or preparing for the consignment sale) is just some of the little extras that come with life to make it more interesting and enjoyable.

But seriously does that sound like a lot? It doesn’t, it sounds like normal everyday life to me, no more, and no less than what any other normal person might do in their life, right?

Here’s the rub – I am not like any other ‘normal’ person. I look like one; I walk and talk, like one. I even act like one. But what you don’t see is what is invisible. You don’t see the pain throbbing in my legs as I stand there talking to you, or in my arms as I try to carry an empty trash can back to the house, or my hands that look perfectly plain on the outside, but feel so swollen on the inside that I sometimes wonder if they might not just burst open one day. You don’t see the fatigue that forces me to sit or lay down every 20 or so minutes the evening or the day after I’ve had a ‘good’ day of pushing it all aside to do ‘normal’.  You don’t see that even though I am smiling and laughing, and enjoying myself, I still feel the pain in my limbs that can only be described as shards of glass traveling through my veins. You don’t see how confused and foggy I get because the buzzing of the light and the ticking of the clock are louder than anything else going on so whatever it is that you are saying  to me is going in one ear and out the other. You don’t see what is invisible.

What you do see is this person that can’t seem to get it together.  Is she lazy? Is she a slob? Is she a scatterbrained? Is she unreliable? Is she stupid? …

Nope but she is feeling a little invisible right now.

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One thought on “My Superpower is Invisibility

  1. Cheryl Risden on said:

    This is me. I can understand how it is. My 6 year old has sensory processing disorder and I am getting a serious feeling of dejavu. I see how she feels because I remember. Im trying to deal with fibro / ME / CFS a husband with Parkinsons a child with SPD and hearing loss a d a tantrumming 5 yr old. I just can’t get my act together. Ive had costochondritis for 3 wesks so been bed bound for 2 and a half weeks so not only can I not cope with every day stuff I now have a buge backlog that will never be caught up on. Oh and constipation is no longer the joke I thought it was when im drugged up with mrphine.And why can’t anyone else hear the buzzing of the church lights like I can.Oh wait, I know its because they are normal or are they suffering from some other invisible illness that I can’t see????

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