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!


Anonymous Anonymous said...

Hi Zona,

i came upon your blog last month and have really "enjoyed" reading your posts- in other words, i *totally* recognized myself in your descriptions and in all you shared. it has been a help to me, as not many around me (even those who love and care about me) do not understand my lack of energy, coz my personality is such that i would usually enjoy socializing and doing outings etc. but i just cannot follow the same lifestyle that i used to have.

and yet i'm only 23. and yet i do not have chronic fatigue (at least it hasn't been diagnosed!) but i do have crohn's disease, spondilarthritis and fibromyalgia -way enough already to cope with.

it's probably better to tell you more about myself, etc. by e-mail(instead of on the blog), so here is my address: hoping to hear from you sometime -if & when you're energetic enough to reply!!

take care ~ kris xx

2:04 PM  
Anonymous Anonymous said...

Hi Zona,

this is kris again. forgot to mention that the reason why i finally wrote to you is.. that i read your last post. about the joy and the stress of considering your bro's visit. and how wiped out you were afterwards.

well -it just happened so that, last week-end, i was gonna have family members over (that i hadn't seen for about 6 mths). well, before my visitors arrived, i was feeling soo sick i didn't know how i could handle it. somehow i made it through...didn't cook anything but went to buy something -couldn't handle cooking either. = i was feeling shaky, nauseous etc.

afterwards, of course i was glad they came... but i was so angry that i hadn't cancelled for my body's sake. coz now, which is 4 days later, i'm still feeling sooo wiped out!!! i haven't been able to do anything! so... was it worth the effort, those 2 hours together, for feeling sick and exhausted the following week!? so hard to know which to satisfy: the mind and heart (yearning for social life and company) or body (yearning for rest)?!

just sharing my thoughts with you...kris xx

2:10 PM  

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