Fragile: Handle with Care

Fragility:

My existence has become fragile. Leaving the house presents a plethora of challenges from being sensitive to light, being sensitive to excessive motion and sound around me, all the way to the fact that movement is extremely difficult and very, very costly. Here’s one such example of just how fragile I am and how quickly my day can take a dramatic and ugly turn for the worse.

I meant to post this here a while ago, but as many of you experience as well, my brain is too busy trying to make it through the day that I don’t have much left for functions not related to daily existence. For some of you, you may not have yet noticed the effects of stress and/or anger. I noticed in the first 5-6 weeks of all this.  For me, having had a severe reaction, the effects of stress or anger are nothing short of horrifically ugly. Still, 5 years later I struggle with this daily.  Please, I would love to hear from those who can relate. It took me about 3 weeks to stop shaking and for the added pain and electrical sensations to begin subsiding. Just about this time, the flood hit Boulder – which only served to make things worse for me physically.

And again, every time my baseline gets lowered, it takes longer for me to get back to my previous baseline. Most of the time, I never make it back to my previous baseline. My new baseline is permanently lowered and the cycle of one step forward, two steps back begins all over again.

I wanted to post about this and my thoughts on it. But when my baseline gets lowered (like it was that day) I essentially am forced to crawl back into my shell until it gets better again. My brain and eye abilities follow my baseline too, so when things get worse, I get real quiet. Just the opposite of what you should be when you need help.

Even making food for myself becomes prohibitively difficult during those times. I’ve learned to deal with the daily fluctuations and the downward trends, but after 5 years it’s getting more difficult to cope. Especially since many of my basic needs still are not being met. ** I STILL DON’T EVEN HAVE A COMFORTABLE BED TO SLEEP IN!!! **

After 5 years, we’re still simply not getting the help we need. Makes it tough to get out of bed everyday when you know that no matter how hard you fight, you still can’t succeed without the basic help you need as a human being. Then, when I DO force myself to get out of bed everyday without fail, things like this can immediately destroy any progress I’ve worked so hard to make. Just erases it completely and sends me into a very frightening downward spiral of pain and neurological issues.

Doctor visits are no different. They leave me in the same state.I guess my point in posting this, besides just sharing, is that I would like to hear from those who have reactions like mine to stressors and/or anger. I know why this happens, Neurologically speaking. I was fortunate enough to have a Neurologist explain that part (at least). But I’d still just like to hear from others about their experience with Neurological symptom increases with stress or anger.

From my Facebook post – 6 September 2013

Yesterday was a very rough day, some people’s souls are just so ugly.

As you know, I rarely get to leave the house. These last 10 months or so have been rough as I’ve experienced some fairly big setbacks, but I’ll get to that another time. 

Yesterday, Nikki had a root canal and had 2 wisdom teeth pulled. She was a mess, and it was time to pick Aedan up from school. There was no other option, so I drove her to the school. Besides the physical challenges I face daily, I would have been mentally unable to get through that on my own, it’s too much for me to process. The world still happens too fast and my mind and eyes both become quickly confused and overwhelmed. Just like many of you are experiencing.

I parked in a Handicapped space and made it about 50 yards to the door Aedan comes out of. For the last few days, the light tremors had come back. I was already shaking a bit. I made it back to the car, clearly having a difficult time. This was NOT one of the many times this might appear invisible to others. Once I got back to the car, there was an older woman walking around my car, clearly agitated. She asked who’s car it was. I responded that it was mine and I started to try to get in.

She stood in my way and demanded to know if I had a Handicap sticker/placard. I said no. I have permanent Handicap plates. Two of them in fact, front and back. I expected that to be the end of it. But apparently ugliness knows no bounds.

Instead of walking away after seeing my plates, this woman actually had the audacity to block me from getting into the car and proceeded to tell me how I took the spot of a little girl in a wheelchair and how that since I decided to park there, they had to wheel her further. She went on and on… I was stunned. 

In front of me was this woman who was hell-bent on badgering a clearly and severely handicapped man (with PERMANENT handicap plates) for parking in a Handicap spot.

First, my brain was too confused to respond. My brain knew what it wanted to say, but once again, I couldn’t speak. That in and of itself is a hugely frustrating part of this sickness. But worse still, is that instantly all my electrical pain, shakes, confusion, etc all became dramatically worse. I immediately found myself in an electrical storm of intense, shaky pain. This is how my body responds to even minor stressors now. I learned about stress/anger and it’s horrific effects within the first 6 weeks of becoming “floxed”. Now 5 years later, it still has the same effects. 

I wasn’t then and still am not too upset about what happened. I wasn’t even that upset at the time, just more in shock I suppose. But even minor stressors will trigger an instant and massive increase in all types of pain, mental/visual and mobility issues. Almost 24hrs later and I’m still shaking and trying to cope with the substantially increased difficulties and pain. Thankfully I’ve learned how to control even small amounts of anger most of the time. If I did allow myself to get angry or more upset than I had been, I would be in a far bigger physical nightmare than I am at the moment. 

This is less about that woman and more about what I’m left to deal with in the aftermath. She struck a chord though in that like the rest of you, I have fought to be believed since day 1. So to have yet another ignorant person insinuate that I’m fine struck a nerve I’m sure. Like most of you, having Doctors be entirely unwilling to believe that something this horrific can possibly happen has taken a toll. And I’m sure subconsciously that bothers me more than I realize. But the black and white of it is here I am, almost 24hrs after one person made brief but insensitive comments, I am paying dearly in tortuous pain and a frightening increase in symptom intensity. For no reason. 

I remember this, this is what I’d feel after every single Doctors appointment. This is one reason I had to give up on Doctors. I could no longer afford the intense increase in symptoms and difficulties after Doctors arrogantly dismiss all that we try to tell them. 

I’m not sure this makes sense or that there was a clear point. I don’t want this to be my first post in 3+ months, but I have to get this off my chest. This is how my life has become, and how easy it is to get physically hurt now. I think most of you would understand or have similar experiences. Thank you for reading, and I hope I’ll be able to post more soon. Until then, thank you all for the kind words. 

Love for you all.
Michael
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One thought on “Fragile: Handle with Care

  1. Anonymous says:

    I too have been floxed like you from avelox and your story is so identical to mine…. I am ging to email you for more info.. . I can make it maybe 50 yards and then I gotta sit down too. I have had people actually take pictures of me with their phones when my husband parks in a Handicapped spot for me because I don't look the part. It's horrible to be treated that way. I use crutches if it's a bad day or more than 50 yards to walk and that helps with the stares and stink eye I get. They have no idea the pain we are in… and the years we have suffered. Hang in there and let it go!! I just tell them I have a neurological syndrome like MS and they seem to get it then and it ends questions. Be strong…

    Like

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