Sunday, November 19, 2006

O Give Thanks For Family and Friends

I had the pleasure this weekend of seeing my brother whom I hadn't seen for ten years. I was thrilled he was coming. I was stewing over him coming. Yes, as with many things about CFS, FM, MCS it is quite possible to have two emotions going at the same time.

You see we're a close family so of course I was absolutely besides myself over the thought of landing my eyeballs on his face again! I was so looking forward to catching up on everything, though we do talk on the phone a lot. But I had to do the CFS thing first...

What's the CFS thing?, you ask. Well it has to do with surveying the house and realizing how it takes us a hundred times longer to accomplish a task than the normal person and wondering how the heck you're going to dispose of the piles in time without ending up majorly crashed just in time for your visitor to arrive! It is a MAJOR problem and one that often causes a slight nervous breakdown. I am no different from the rest of you with CFS. I contemplated that breakdown...

...and I wondered how I would manage to have a day and a half conversation with someone, no matter how much I like them, when even on a good day I can typically only handle about an hour at best. Sigh.

Then there's the MCS thing. What if they arrive stinking of Au De La Pew? Can I toss their clothes out in the rain? Dare I ask them to walk around the house in my silk nightie or strut naked? Oh, so many complications to what for everyone else is no problem at all.

Then there's the more hidden things, the ones that we don't usually think about and if we do have a very hard time admitting even to ourselves let alone anyone else --or in a blog! Hermititis! When one is homebound the majority of the time, having been isolated from family and friends, abandoned by many once they figure out that you can't go out and play with them anymore, one can loose their social grip -- forget what it's like to have a living, breathing, talking person in the room with you at the same time. And you wonder just what you do with them.

I hear others talk about this too, when they dare to mention it. Because we all know how much effort the "researchers" and CDC et al have put into 'proving' we're all just mental cases no one EVER wants to even ponder anything that might remotely be tagged non-physical. And is it any wonder?! If the public had a clue just how much time and money has been poured into proving we are NOT ill, wasted years while people suffered from pain and lack of helpful treatments, they'd understand just how far we would go to avoid these kinds of discussions! But I will venture out and mention it here.

It IS difficult for many reasons, some of them very much physical, biological, like the problem of sensory overload so many of us have, cognitive function, and reactions from fragrances etc. It is also difficult mentally and emotionally in ways too. They say it takes 28 days to form a habit. How many days does it take to break one? We observe how toddlers develop in social skills. It takes a while. Well let me tell you! When you spend the majority of your time alone (save for those who share your abode)you begin to wonder if you even remember what social skills were! You WANT to socialize --- well in ways you do.

For some that desire goes right out the window with cognitive ability and pain-free living as if some area of your brain that carries the 'want to be a part of it' gets skewed at the same time. But ya, some of the time at least I still wish to socialize. But do I remember what that's like? Most of the time when someone is in the same room with me I'm subconsciously trying to look normal, act 'normal'. That takes a lot of effort, effort I don't realize I'm spending at the time. It requires a ton of energy. And so is it any wonder that afterwards I'm wiped out? No. To a "Norm" that might sound ridiculously exaggerated but I assure you it is not. Visits ARE tiring even when you love the person dearly.

And there is one last thing about it too. GOOD stress is just as draining as bad stress. Adreniline pumping from excitement ends up making you feel like you've run head-first into a brick wall.


My brother's gone now and I'm very much missing him already. I'm also missing the rest of my family terribly, particularly the ones I haven't seen in years and those are some of my closest family, my kids and grandkids. Yes, this was indeed a very happy, yet at the same time very sad weekend. Contemplating my brother's visit caused me to contemplate what it would be like to be able to see the rest of my family. Those thoughts brought back in full force the reality of my condition and the consequences of my condition including financial ones. It caused me to recall a time past when visiting was never a problem. When you did things without thought - when you were able to do things without thought. When life was soooo much simpler and sooo much less complicated. When I was a "Norm" who would never have even thought one second about any of this. Well....not about most of it anyway.

I'm so glad he came. I'm happy. I'm sad...


O Give thanks unto the Lord for He is good and His mercies endure forever!

Monday, November 06, 2006

What Does It Matter?

Being ill for so long with an illness that isolates you from the world, separates you from the mainstream and away from the hustle and bustles of what we call life can sure give one a different perspective of things.

Some may call it rebellion, I choose to call it having a better view! :) So many things have changed, yet many remain the same, just more exposed like freckles on an unpainted face. I suppose I've always seemed a bit 'different' to my friends. Perhaps that's because I walk to a different Drummer and His beat isn't quite the monotonous march like everyone else's but more a rhythm syncopated by the rhythm of a timeless day.

I suppose until one is yanked off of the assembly line you can't see how automated our lives have become. It's only when we can't do a thing anymore and get hassled about it that we just might stop and question the value of the thing to begin with! And so it is that I've been watching the world out there with a different pair of eyes.

I've been homeschooling my daughter. Strike one. Actually "unschooling" her. Strike two. I don't have a credit card. Strike three. Nor do I get up with the birds, or shop til I drop. I'm not impressed by initials after names. My, that must count at least a whole inning right there! But I don't care. :)

I've watched my kids get older and raise kids of their own. It seems like everyone is so busy these days working, working, working that no one has time to live anymore. And I can't help but question what kind of life is that?! I've seen some go way in debt to acquire a few initials only to work for the following twenty years to pay it back. What good is that? And before you know it we're all topped with gray and all that we've acquired is sucked away, too often due to the abuses on the old bod' from all those years of push, push, push, on medical bills and/or nursing homes...

I've come to view 'education' as the result of curiosity and need to know. I see occupation as something that usually only occupies the majority of your time but I think it should really be something you do to put food on the table, then end, or if you're very lucky, something you enjoy doing. At the very least it shouldn't take up all your time, unless you're an artist. (LOL)

We don't do 'normal things' in this household much anymore, or at least we don't do them in the normal ways. What does it matter really? To some people out there it seems to matter a lot. I know because they're sure let me know it! But really, what does it matter? If our days and nights are a bit skewed does it matter as long as we're getting enough sleep? If my daughter chooses to learn something she enjoys first and hopefully gets good enough at to feed herself with, what does it matter?
And if I don't define living in the same way you do does that make me wrong? After all doesn't this life belong to me? And just perhaps my reason for living, my purpose is not the same as yours.

Someone once refered to God's kingdom as the Upsidedown Kingdom for it seems upsidedown from the way the world opperates. The last are first. The least is the greatest. What the world sees as having no worth the Lord sees as having great value. The older I get, and just perhaps because of my CFS/FM/MCS glasses, that upsidedown kingdom looks more rightside up to me. So much depends on what your vantage point is--- Chronic illness can give one a heck of a view out above the mainstream!

So next time someone comes along and grills me about my daughter's schooling methods or our odd hours or wondering why I'm not panicked to have my clothes smelling like a fresh spring rain of an irish morn like theirs do (stinky is a better description of it)don't be surprised if you see me doing a little syncopated jig while singing "What does it matter?"

Well I've never been to heaven
But I've been in Oklahoma
Well, they tell me I was born there -------(not really)
But I really don't remember
In Oklahoma or Arizona
What does it matter
What does it matter


Wednesday, November 01, 2006

I'm Just a Lil' Yo Yo

brrrrr it's gotten cold ! Last year i felt warm when it was this cold but not this year. I'm freezing!

still very busy here. FOund out my brother might be coming out to visit me in a couple weeks! EEEEK! not enough time to clean...not at my pace ! If he gets to come it will only be for two days. I haven't seen him in 10 yrs so i'm excited!

you know how it is when you're ill? I have mixed feelings about all this. On one hand i'm very excited and elated yet on the other thinking about him being here reminds me how ill i am. I know i won't be able to do much with him...which is an understatement because i spend most of my time on my bed these days and can't do that when trying to visit with him. It's not that he won't understand but more that know how it is...subconsciously we're always trying to behave 'normally' when others are around and that often requires more energy etc than what we have ...esp me anyway.

I've been having weird head pain ... doesn't exactly seem like a headache but maybe is.... off and on for days which is driving me nuts. Think my neck might be tweaked along with my sinuses but not able to get into a chiropractor. I can only dream that that would help! The cold front is making both of us ache a lot. and the stomach/gut problems go on.

So today i don't know if i want to jump in jubilation or have a good cry....