Known VS Unknown Environments and FMS

Known VS Unknown Environments Why we tend to stay home. Isolation or control ? I happened to hear a comment the other night on a movie about a blind man.  It was his Mother telling his new girlfriend ” do not base his ability on  what you see him do at home, in an environment he controls” And it rattled  around in my brain, until I realized, just how that applies, to us.

A large number of us, prefer to stay at home … period. To the point where  some of us, are downright agoraphobic. The line from the movie was not the  first time I had seen this effect, in action. As I recall seeing the same  effect, with those I used to teach.

I was a one on one life skills teacher for persons with Disabilities.  I noticed, that when they were at home ( once they got used to the apartment ) they seemed to do pretty well. It was when I got them outside of that  environment, that their over all state and general performance, suffered. 

Once they were used to certain stores and the like, their abilities improved,  at least in that place, but if I took them somewhere they had never been,  again, performance suffered.

So I had to ask myself, in what way does this apply to our tendency to be ” stay at homes” ? Now, it is a given that often times, we just don’t  have the energy to face the chores in the outside world, that is nothing more than fact. But how much of our reluctance, is also due to the fact  that we have NO control over that environment ?

Sensitives : For example; If here at home, it is too hot or too cold, I can walk right  over to the controls for the AC or heater, and change that. I can strip down or dress warmer, in short, I have some direct control. But what if I am out and about ?

Now, I am stuck in whatever I happen to be wearing, having to  deal with often sudden shifts in temperature ( say from the AC in the car, to out in the heat to now back in the AC in the building ) and that’s just  one aspect, the ambient temperature around us.

Light: Now I don’t know about you, but the horror of florescent lighting  is enough to drive me about bonkers. Yet, such lighting is in most public buildings, or doctors offices, so yet another thing, my body does not like, and reacts rather badly to, that I have no control over. Not to mention, we do not do very well in bright sunlight either.

Rest to action phases: Now, at home, if I need to rest, I can just stop  whatever it is I am doing on most days, and go lay on the sofa and watch  TV or read a book. I can even go take a nap if i want. When I am out ?  None of those things apply.

Smells: At home, we can to a high degree, control what we smell.  Outside and going about, we have little to no control over the major  assault on our senses from all manner of things, from the detergent  aisle at the grocery store, to the woman sitting next to us on the bus,  who bathed in her perfume. Let us not even get into the nasal assault  we suffer when walking into any doctors environment.

Noise: Now this one I know for a fact is an issue, as I wear an MP3  player around my neck with ear clamp headphones, literally everywhere I go, to block out the noise all around me as any failure to do so, and I come  home even more wiped out, than if i didn’t block it all out.  And again, in my own home, most of the time, unless the TV is on,  which is rare, the only noise is the AC running, as total quite,  is preferred. ( Which is why noisy neighbors about drive me crazy )

Desensitization or over excitation: Now some might say, we are creating our own problem, by exercising such strong control over our home environment, as it does not prepare us for the assault on the body in the outside world. And in my personal case, they might even  have a point, as in my current situation, I have almost total control over  most aspects of my home environment, but what about those of us, who have a  house full of kids, husbands, wives, pets etc ?  Granted, even they have some greater control over their personal space,  but not nearly so much as I do … yet… they suffer the same issues  as I do, when they go out and about.

So what are we really dealing with here ? A case of, we shelter ourselves  and therefore suffer more when we go out, or a case of we would suffer even more, if we did NOT control our personal environment, as then we  would have NO respite from it ? Even in most of the rules, regarding persons with disabilities,  there is always a clause stating that they should have in all cases,  where possible, the”least restrictive environment “.  

In fact, in persons with the more common disabilities, there are major  protocols in place, to reduce the distress of the shift from a controlled  to a non controlled environment. A read of the research shows clearly,  that you can find notations to health professionals, in plenty for just about everybody.. except us. Now, the more severe the disablement, the more  complex the protocols, but to my way of thinking, perhaps there needs  to be some created, for us.

For example: At the doctors office, less bright lights if you please,  which makes it a need to…. Lose the waiting around for hours in crowded noisy waiting rooms,  put us in a private room to wait, with dimmer lights Let us sit with our feet up if we need to, as for most of us the forced legs  down position for hours means, we will fall down when we go to get up. Simplified forms to fill out or have the nurse just ask the questions  and fill it out for us Bring us warmed blankets, if we have to wait, so we don’t get chilled,  as most doctors offices are like refrigerators.

Just these things alone, would make what can be a horror of pain  and distress, a typical visit to a doctors office, into something  a lot more comfortable to endure. And I think it is high time, we started asking for them.

More soon….

How we pay for goverment services, with time spent

Well some very good news and sorta good news going on this week. I am still waiting for all the things that have been on hold for almost 2mts now, but some progress has been made.

And the mate finally got approval for funding, at least for most of his retraining. As well as, he blew a few minds today, when he not only finished the first test they gave him in record time, he aced it as well. So they were rather impressed 🙂 

The sheer amount of time both of the above has consumed to even get to this point however, is astronomical. Now, anyone in our shoes, who is having to depend on any federal or government agency for aid to do anything, knows full well what I am talking about. As the price we pay in time, and sheer frustration, is almost beyond counting.  

This week coming up alone, will mean a ton of phone calls for me, and perhaps a trip to the medical records dept, to snap at a few laggards, personally, as by and large, they are the hold up on my part.

And he will spend hours upon hours with yet more body testing, days worth for him. Although, why they even need all the extra testing now, since they do have approval for at least the bulk of his retraining, makes me wonder. 

It could come to serve us later down the road, so I will not complain too much, but I cannot help but think it is yet another agency, who is making sure they keep their jobs, with the veneer painted over it all of so called “helping” others.  As all the testing is costing the state 1000’s of dollars.

( And we wonder why the state is broke ?)

But, on the side of blessing, some progress has been made and committed to, now it’s a matter of following through on all of the steps needed, to see it completed. But it has been a very wearying serveral mts, for us both…

Welcome to my world.. 🙂



Up all night and FMS

Well, good news and bad news today. The good news is, I will not have to mess with my food benefits again, until 2013.. so yeah 🙂 The bad news is, I am back to being up all night.. sigh….

This is the thing I wanted real sleeping pills, for ! I am racking my brain here, trying to figure out just what is setting this off. Even with my other medications,  I am tossing and turning like a top and having to get back up, repeatedly.

Now mind you, this is despite the fact that while I am up, reading, watching TV or whatever, I am sitting there falling asleep, but .. big but here, go to bed and lay down to try and keep that going … and forget it.

I think its the back problem again, as what seems to be the worst, is my lower legs, cramping up, in pain, etc. Enough to where the problems, wake me, regardless of how tired I am.

Which just pisses me off, as I should have already been seeing a Chropratctor over this. However, if you have read my other posts, you know how badly that idea has gone. It is making me real short on my temper ( born a red head and you know what that means )

Now, I know full well that getting upset about it, is not helping matters here, but it is very hard not to, when the delay, is due to other peoples greed or their stupidity, and I am the one having to suffer for it.  

I can deal with just about anything, if I know that all that can be done, is being done. It’s when you have situations like this, when what would help, is not being done, for no good reason. That just raises my hackles up. 

But, I need to get over that and chill, as that is NOT helping my sleep problems, in the least. 

Hail to all my fellow Vampires of the night and may you rest better than I am



Good news and Bad news, back issues, old injuries and FMS

Very tired. Had to be up earlier than normal, ( doc appointment, vein specialists) so I did not do my sleeping meds, so I would not oversleep the time to go, and of course, I slept even worse than usual, as a result.

But have good news and bad news, on what I went to have checked out, which is my lower legs ( which have been cramping, having major pain, numbness etc ) which they thought might be PAD, (Peripheral artery disease ) so it was off to the specialists. ( it took me 6mts to get the appointment ) to find out that the blood flow in both legs and arms, is actually, pretty good. 🙂

Now the bad news is, they surmise that due to the signs and a prior back injury, that it’s my back that is doing all of this. No surprise to me really, given how badly the back has felt, for some time now.

I believe it all traces back to a major accident that happened when I was 14. I totally twisted my back and neck. Now the back, at the time, was able to be put back to a normal curve, after literally several years of treatment. ( it was twisted so badly, that the curve was the reverse of normal, then canted sideways in several places ) So I have no doubt at all, that it suffered damage, in the original injury. I remember the x rays, ugh !

Which means that all of it, has likely gone Arthritic too boot, like most of the rest of my body, and it might have the same issues as my neck has now, which is Spinal stenosis, which causes numbness, pain etc in the arms, neck and shoulders. They were considering surgery on that, but thankfully, Physical therapy works to keep it under control.

This problem is due again, to the  car wreck in my teens. ( a whiplash injury I suffered at the same time as the back injury, and it has never fully healed. The two vertebrae of the C spine, that have the worst issues with Spinal stenosis, are the same ones that suffered the most damage in the whiplash )

It would explain a lot, if that is the case, but it makes the pain, no less. Spinal stenosis can be anywhere in the spine, and what it basically means, is that the bones are pressing on nerves in the spinal column.

I can see more PT in my future. 😦  gahh.. it is helpful most of the time, but it feels like you are being treated like Gumby, in the hands of a demonic child. As Physical therapists seem to have a sadistic streak in em!

But at least I know now, that I don’t have to watch my legs and feet quite so much, for visible damage, due to an impaired blood flow. Which I will admit, had me concerned. As their seeming to fall asleep, and/or going numb on me all the time, made me really wonder about them.

Now, if I can just get past the hurtle of finding a Chiropractor I can see under my health plan, we might be able to really DO something about it all. ( see other posts for the nightmare I have been having on that issue )

Now of course, having Fibromyalgia means that all the pains and issues that are being created here, are having the “volume” cranked up to insane levels. Let’s just say, if the pains were in fact sounds, my  eardrums would have flown out of my ears, a long time ago !

More soon…