Thursday, March 30, 2006

Alone on planet earth? - Why are we forsaken ?

Someone was talking to me today about feeling alone and depressed, feeling so ill all the time and wondering if God really cares. Does His promises only apply to other people? And then feeling guilty for questioning and having such thoughts which she equated with lack of faith ---- Here is what I replied:

I don't think there is a one of us who haven't had our times of feeling just like you are now, wondering how God can care about us yet seem so far away and so silent. Then we look around us and hear about Suzie and Joan who don't seem to have a care in the world and when they do they seem to get instant deliverance from them. Why not I ? we ask. Sometimes life sure doesn't seem fair.

Just today I was talking to a lady who has FM who thinks of herself as a Christian but doesn't seem to quite understand all that Christianity is about. I was telling her that sometimes it seems that our sufferings are actually for someone else's benefit. Now doesn't THAT sound crazy?! But if you stop and think about it I think you'll note that most of us have had some friend, some family member who knows how in pain we are etc and wonders what it is that keeps us going ---and THEY see God's presence. Sometimes while we feel like we're a burden to others it is exactly just that, that the person needs to be challenged with / tested with at that moment. Sometimes it's a church that Jesus is asking "Do you love me? Do you really love me? Take care of my lambs.". Sometimes it is a spouse or a parent.

But seldom is God talked about that way today. Instead most prefer to hear about a candy coated God who dispenses happiness, money and fun stuff at our every whim instantly. They do not understand that as unjust as it seems to us it is the place of a man's soul/ heart that He is most concerned about. Building hearts and love takes exercise just like muscles and when I look around me at today's world I see a lot of wimpy muscles out there... lack of compassion and grace for one another, lack of concern for the weaker ones. Who could those who love the Lord learn about laying down one's life for his brother, giving when it has to come from something more than out of one's excesses, go out of their way to do for another when it isn't to their convenience?

We are the sick and infirm, the poor and the needy. we didn't choose to be. We didn't declare it or demand it and surely didn't desire it. We just are. But perhaps in God's world it takes both... those who are called to give and those to whom things need to be given??? For who could they help out if there aren't those who need helped?

Just yesterday when my daughter was stressing the heck out of me I got a jolt in my head that said "patience! you're learning patience". I said "what??!!! just how much am I supposed to need?" He said "more than you have!". And the thought came to me "love the unlovable. It's easy to love the loveable! ... " and I thought surely I want and need unconditional love and of course we think of God as the One who is probably the only being who truly have unconditional love for us... Parents come in there second. Of course I knew I loved my daughter no matter what she does. She's my daughter. But this new notion of loving the unlovable... Sometimes she does seem a bit unlovable considering her behavior towards me... Perhaps I needed her (a daughter like she is) to teach me a thing or two to make me better???

Maybe sometimes we are the fruit stressors?

(fruit testers? aka our being around exposes the imperfections in of those in "you will know them by their fruits")


Monday, March 27, 2006

03- 27 - My Disappearance - Hermit Hybernation

Well, Did you miss me? If you've been reading my blog you noticed I've been missing in action here. I'm sure it didn't take you much imagination to surmise why. Yup, ye old "slam 'em, knock 'em down flat, boomerang, Flatten-her-out crash" come rushing over my in one huge slapping wave the other day.

And here I was soooo thrilled to be able to do more than put the dishes in the dishwasher for the day's task! Should have known better after all these years. I'm going to do the wifely thing and blame it on hubby. Yup, it's all his fault! You see last week dear hubby decided to grab one of those hand held steamer cleaning thingies at Canadian Tire. You know the one? It's like a spray bottle that you plug in, it heats up and out comes small bursts of steam as you pump the trigger. Works fairly well if you can keep squeezing enough. Sadly neither of us have much continuing oomph in the trigger fingers.

So of course he had to demonstrate it on the stove top. So proud he was of the fact that I could now simply wipe the grease away without worry of harmful chemical cleansers, without excuse of MCS reactions to noxious fumes, which obviously I never endeavored to play guinea pig with. Yes sir, my dream come true (rather HIS dream I'm sure!) ...a clean house without fumes of doom! But alas, we both neglected to calculate how deceptively WORK was hidden in this task. Work, that word that to those of us with CFS/FM equates to expenditure of much valued, short supply energy.

And so it was that the back screen door got cleaned that day, and then around the sink. Afterall we did have to experiment with this new little gadget that was suppose to make life easier, right? I didn't notice how tired I was much less how quickly what reserve I had was draining out of me, though the swaying should have given me a clue. [note* I've noticed that when i'm overly exhausted and having to finish a chore, such as standing in line at a check out, I tend to sway, shifting weight from leg to leg doing this continual motion dance to remain upright. I've come to think of this as some automatic mechanism that amounts to kicking up adrenalin until such time as I can lay flat or fall flat on my face.]

Perhaps it says something about the state of our home when the two of us were so excited and rejoicing over three 3 foot by 3 foot spaces of shine? (more on the revolt of the dust bunnies on another day). Ok so I confess, we were impressed and that is not to say that this little gadget is the end all solution of housework helpers. Gimme a maid instead any day !

So now you have the picture. Three small spots of cleanliness and one very wiped out CFS lady. I was drooping but proud of my accomplishments and guiltless enough to plop into bed as my reward. However-----

The next day i awoke and stumbled into the kitchen for my morning cup of coffee. (it's decaf btw). I was stunned. I was unglued. By the time I arrived in front of the sink near the pot I was absolutely depressed. I could NOT believe just how far it was from the bed to the kitchen that morning! It felt like ten miles. Half way there and I wasn't sure I was going to make it, I was that exhausted, weak. (it's about 20'). I hugged myself telling myself I must not have had enough sleep and would perk up after a cup of java. No such luck.

By late afternoon it was obvious that the heaviness was not about to lift that day so I resigned myself to the fact that it was just going to be 'one of those days' and flopped back down on the bed. Now I have many of these wiped out, heavy, totally exhausted days but it's rare that I am so bad that even talking requires too much energy. It was one of THOSE days. I was so bad that even inhaling and exhaling seemed to require more energy consumption than it felt like I had...

Three days later and here I sit. I'm still wiped and unable to do anything. This is the price of CFS, that non-existant illness that exists only in our heads according to many of those researchers -med types out there. I'd love to have them experience the complete lack of oomph we have for just two weeks of their lives. I think they'd start screaming "uncle" and immediately demand funds poured into real research. Today is the first day I've recovered enough to type a few lines on the computer. Forget doing anything more than walking to the bathroom.

Many PWC's do have depression. There's that old chicken vs egg argument about depression and CFS. I personally can say that I don't suffer from depression usually. In fact I was certified sane and non-clinically depressed by a certified psychologist paid by Social Security to evaluate me. I'm certifiably sane. How about that! But even he acknowledged that these kind of chronic conditions and all the ramifications to lifestyle will and does cause depression at one time or another. It's bound to. I don't usually get depressed, I get angry! LOL I do get frustrated, irritable, sad, bummed and anxious however. Some of that is emotional reaction to the situation but some is directly related to a particular physical, biological reaction (symptoms). For instance certain chemicals cause symptoms that occur with accompanying brain reactions that bring anxiety and/or irritation. Perfumes, for instance, make me irritable along with closing my airways. I used to think I was irritated because I couldn't breath until it occurred to me that the anxiety was part of the reaction itself. Reactions that cause my nasal passages to swell also cause anxiety whereas colds that stuff up my nose do not. But there is one instance where I do get depression and that is when the sheer exhaustion slams me. Again I discovered through years of observation that rather than being depressed because of the fatigue I was depressed with the fatigue, ie happened simultaneously. Whatever causes the exhaustion also causes depression. As well it IS depressing in that way that involves thoughts floating around one's mind to be totally wiped out unable to do a thing for days on end.

And so here I sit telling you all this while that super duper melt-em grease steamer sits idlely on the counter reminding me that there are many other unclean spots that beg shiny-ness. (I love adding words to the english language! : ) )

Hopefully tomorrow a bit of energy will show back up??


*ps - hubby is on week three of a bad ear problem. I'm trying to decide if he was just baiting me by trying it out on the stovetop or if he really was just curious to see how well it would work. A shiny thing in a world of dinge looks so out of place!

**PSS - your comments would be soooo appreciated! Leave 'em below!

Monday, March 20, 2006

That Thing We Do and Don't Do -aka Whining ?

I was thinking about what I would blog here today and caught myself thinking that I'd better not do the very thing I'd said was part of the purpose of this blog, sharing with others the truth about daily living with cfs symptoms and all. I wasn't going to whine... I wasn't going to post about my day to day yuckies because no one wants to hear a whiner whine all the time. Isn't that the way we feel so often? Stuff it in. Hold it back. Keep it mum. And here I'd said that the one reason I had thought about blogging was to tell the things that don't get told on e-lists! What was i thinking so that other's would know they aren't alone.

Funny how influenced we get by culture even though we may never hear it put into words. Of course it's equally incorrect to tell someone to their face that we think they're whining too much, unless they're our child of course. And that's most likely where we get that idea. On the other hand, we've all known at least one of those annoying whiner types who seem to do nothing but complain and feel sorry for themselves. Thus we curb and restrain our own expression of woe for fear WE are one of those annoying people.

This tendency plays right into another problem we run into so often, family and friends not understanding us. Could it be that we think we've conveyed information to them when we really haven't? At least not at the gut level, or being oh so very careful not to talk about symptoms too often for fear of scaring them away? If we don't know something we can't act on it. Same thing is true for family members and friends when it comes to understanding our condition.

Where is the balance between the two, not telling and telling too much? In this culture of ours with our brave and strong heros we don't want to acknowledge weakness. (probably true in many cultures old and new). Survival of the fittest. And so we look the other way when we see someone with no legs and we keep our mouths shut when our owies are troubling us. Being vulnerable is scary. Even appearing vulnerable is scary.

I've been reading an interesting book on raising kids . He talks about how kids need to be attached to their parents and how when they've replaced their attachment to parents with friends they start acting out. One of the things he points out is how vulnerable kids are in their need for closeness and attachment yet how hard they try to hide their vulnerabilities from their peers. Thus they come off as uncaring, unfeeling, mouthy, and hard headed. They never let on their fears or appear weak. Kids can be cruel, and they know it. But how do we overcome that as adults? With peers and bosses we sometimes don't. But sadly this too often holds true with family and those who are closest to us. Sometimes those people help keep us mum too...

I can also tell you that exposed vulnerabilities in our loved ones can make us very uncomfortable, very weak ourselves! I can think of three extreme instances to share with you when I felt very much that way, totally helpless. The first time was at the same time when I became ill and had a teeny tiny baby laying in ICU. He was so vulnerable, so small, so in need of others - me. And I felt totally unable to help him. I felt helpless in my distress. The second time was when my son became ill at age 15. He was so sick, so vulnerable, so weak. But I could do little for him. The last time was when my husband was barely able to breath during a forest fire we had a couple years ago. I sat and watched him struggle to breath, wanting so badly to help him breath yet could do nothing for him. I felt so helpless, so weak, so vulnerable myself because I feared loosing my loved ones in each case, or at the very least not being able to do much of anything to ease their suffering. That is how it feels when someone close to us is vulnerable and we know it. It's frightening because it exposes our own weaknesses.

And so we all dance around this circle of revealing and hiding, sharing and keeping silent... We don't know when nor how much to share so we tend not to share much at all. And I will add, sometimes there are some things that are just flat difficult to know how to share, and some things, like pain, are just impossible to share - but we can try to find words to explain it best we can.

There is so much to discuss on this topic. Perhaps I'll venture into the territory again one of these days. For now I will just add that I thank God that He is the One person I know who is there who understands my sorrows and suffering even when I can not put it into words, even when I don't know if I should talk about it, He already knows and understands. And He doesn't call me a whiner : )

2 Cor 1: 4 Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.

For now I'll close this by saying, "I had a cruddy day today. Better than some, worse than others. I was extremely fatigued, that gotta-lay-down-flat-too-weak-to-stand-up type exhaustion from the minute I got out of bed. It was mostly cruddy due to feeling so disappointed as I had hoped to find a few moments here and there again when I wasn't feeling quite so bad so I could get some much needed housework done. I wanted to do something with my daughter ... So I was tired and cruddy bummed knowing that it was sunny outside and there I lay on my bed, again..." I pray tomorrow brings a few moments of energy.


Thursday, March 16, 2006

Over What Hill? It's more like Mt. St. Helen's !

Today I reached the pinnacle, that phase in the cycle of man - you know that picture that shows a baby crawling, then toddling, then standing on both legs, then hunched over and then crawling again- which made me feel like I'd arrived at that spot where the hunch begins. Perhaps it began a long time ago actually because CFS sure makes one feel like they're ninety even though you might still only be in your twenties. Old age. Yikes!

Why today? you ask. Well, I'll tell you. Today marked the day when I can no longer smile nor can i thhh anymore. You see I lost the last of my two front teeth. Where's Santa when you need him? My uppers are just about gone. Makes for one strange looking smile, warps the dimensions and shape of my face and makes me feel like a poster child for National Geographics. No longer shall I pose for any family picture, at least not when bearing a smile.

Obviously I've been dealing with the disintegration of teeth for some time now. Sadly I'm not alone. My 33 yr old son, JB who got CFS/FM when he was fifteen now has falsies. He only beat me to the punch because of insurance. Unfortunately teeth are not considered a necessity by medical types such as insurance companies including those here in Canada.

This subject of bad teeth has been something I've heard and read about on CFS lists for some years now so I guess it must be quite common place. I can't say I've heard much on MCS lists though it sure wouldn't surprise me if it weren't so for people with MCS too. (ps be ready for abbreviations. Seems we pwc's (people with cfs) tend to use them a lot.) Saves on the fingers and ya, typing does take precious energy. Thus pwmcs now means people with MCS and so on). Back back to teeth... I recall as a young gal we'd look at the horses teeth to judge not only their age but also there health. So there you have it. I'm an old unhealthy nag. What more can I say?? :-p

My poor self image hasn't been helped much by dear Prunilla Fussbucket here (my teenage daughter. You'll get to know the whole cast before long.) Miss Prunilla has been making comments as of late about how I should keep my mouth shut when her friends are around. That's because they've been teasing her about her old mom with no teeth. I feel for the girl, really I do. But I feel more for me. Some days I feel like the old woman in the shoe. Don't have that many kids around anymore but the tongue of that old shoe sure is worse for wear. CFS/MCS has brought me weight loss, to the point of crudely being asked if I was anorexic, to weight gain when I was reassured by hubby dear that I wasn't "that fat" beings that I could still fit through the doorway! and back again. I haven't gone gray but I've gone dark, something equally depressing for a natural blonde. What muscles? I have sags! Nothing is were it used to be nor shaped like it used to be. God bless my 10th grade P.E. teacher who informed us that behind every curve there is a muscle. Well fine. But someone should tell her that sometimes behind those curves there is nothing but flab.

Quite some time ago I found a simple way of dealing with all these ego blows compliments of these invisible illnesses. (too bad the illness isn't as obvious as the effects!). You hang a nice lacy cloth over the mirror. If that doesn't suite your fancy then just use your little printer and the net, snag a pix of your favorite femme fatal, print it off real big and tape that on your mirror. Of course it helps if you have a lot of imagination when you're trying to blow dry your hair but...

Yes, these DD's (dumb diseases) sure take a tole on your ego in many ways. Stay tune to the blog and you're sure to hear more of those ways...

What can I tell ya? These DD's ain't for sissies. Ya gotta have a lot of hutzbah and a self image that relies more on an eccentric imagination than reflections.

Toothless Zona

Tuesday, March 14, 2006

Twenty Six Years Ago...(How I acuqired MCS)

This will be a difficult story to tell, and not a pretty one nor one pleasant to hear about and most likely will be way too long. My story is typical, yet not so typical. However, in it you may find something that you can identify with as well as get to look inside my head a bit and perhaps understand why I have some of the attitudes I do. So here it is...

In 1979, we had packed our three kids in a motorhome and traveled around the western half of the U.S.A., from southern California to Iowa and back again. I was twenty-nine years young, had gone to college studying computer programming and later television directing/producing between the second and third children. I had taken twenty credits a semester (full load was 12), worked part time and raised those two kids all at the same time. Yes, I was very busy! I doubt anyone would have considered me lazy back then.

The trip was wonderful and exciting. We went from Escondido to Seattle to Lake Tahoe to Wyoming, then Colorado and Iowa with Colorado being home base for the summer. In the fall we went back to Escondido, our plans of moving to Washington being put on hold for a bit longer. I never made it to Washington. I wasn't feeling well. When I found I was pregnant I assumed the unwell feelings had to do with pregnancy. However it was like none of my previous pregnancies when I had felt wonderfully well. I was sick, weary, tired, "off" and having other strange symptoms that I've forgotten about all these years later.

The baby was born four weeks early and had birth defects. He was sent to Children's Hospital which was about forty five minutes from where we lived. I thought I was feeling bad due to the stress, the drive, and having a 3, 7 and 10 yr olds at home who also needed attention. But that didn't explain the rash nor the tingling I got in my legs by the end of the week. Still it had to be stress. Right? The baby was very small and wasn't ok, then I was told he was fine and then days later I was told he wouldn't live. My son died at 6 days of age. The doctor prescribed valium. It finally did dawn on me that the rash was a measles rash. I had been given a rubella shot several hours after delivery, another bad idea but little did I know then.

Three months later I was still feeling awful and getting worse. I happened to go to a wonderful doctor who immediately realized it wasn't just stress I was dealing with. In the end I learned that living too close to an avocado grove where they were doing aerial spraying was the culprit. I'd had pesticide poisoning! I also found out that there were several babies in the area who had been affected as well. Knowing that didn't really help anything much. All I knew was that I had all these weird symptoms and was beginning to react to many commonly used products and developing sensitivities to just about everything.

The house made me sicker and soon we were once again living in the motorhome. By spring we decided to move to Arizona near my parents. That proved not to be the best idea. It turned out that they sprayed the cotton fields there with the same chemical I'd been poisoned with. By this time my lifestyle had drastically changed. I wasn't able to go out much. I felt like my body was revolting against me. But it was just the beginning of my problems.

As impossible as it seemed in 1983 I got even sicker. I hurt all over, was absolutely and totally exhausted to the point that I just laid on my mother's couch and wished the bathroom wasn't 15 feet away. I could barely walk the distance. My throat was sore, my glands swollen. I felt like I must be dying. I began to loose weight, though I had little to loose. I went to a nutritionist, a chiropractor and an MD. The MD wrote out a bunch of prescriptions although he really didn't know what was the matter.

I remained that way for over eight months. Finally some doctor persuaded my ex-husband to move me out of the valley away from the smog and spraying. Sometime before I had that bad crash in 1983 my middle son had come down with a strange virus that caused his spleen to swell. He was sick for several weeks. And then my twenty year old brother come down with rheumatic fever. He had lived with me in California the year they sprayed. I believe these incidences were all related somehow.

We moved to the Arizona mountains in the late fall of 1983 and remained there for the next fifteen years. After a few years I was able to tolerate things a bit better but I still had the exhaustion and other symptoms that I never could relate to anything in my environment. All those years my only diagnosis was pesticide poisoning, which lead to chemical sensitivity. I didn't know another soul who had all the symptoms I did. I did finally met one woman who had multiple chemical sensitivity, referred to as environmental illness back then and we compared notes. But she never had some of the symptoms I did and avoidance did not resolve all my symptoms.

1989 was another terrible year. Again I lost weight and became extremely ill, not that I had ever been 'well' since I first became ill. My middle son was 15 and around the same time I found myself going downhill rapidly he started having symptoms. He was down for months. The doctor tested for mono, and was thinking about 'valley fever' and TB. My poor son, who'd been a strong teenager who liked to play sports and lift weights suddenly couldn't move off the sofa. He had all the typical mono symptoms and then some.

Around the same time I had gotten some 'blood blisters' in my mouth. I had gotten them off and on for quite some time but never happened to have them when I was in the doctor's office until that time. The doctor told me I had CEBV (chronic epstien barr virus) which is what they called CFS at that time. He'd thought I'd already been told I had it or would have tested me and told me before! He ran the tests simply so that I would know for sure. But even though my son had been ill and we shared some symptoms it didn't occur to me that he had something that wouldn't go away, much less that he had what I did. It just didn't click in my head. My son had already been ill for a month or so when I finally got a name for my illness in addition to the MCS.

My son remained very ill for many months then seemed to partly recover only to crash again. He went that way for several years, feeling like he was getting better only to find himself feeling awful again. He got married in his early twenties and several years after that I was diagnosed with cfs and fm.

(I warned you this was going to be long! :) so now I'm going to make a huge leap to some twenty years later. One day I'll back track and cover a few other things by topic about these earlier years).

Like many homes, unfortunately, my ex-husband couldn't handle having a sick wife. He'd had enough problems being a husband to a well one. And so after years of illness we got a divorce. That took a huge stress load off of me (there were other problems before the illness) but of course being single and unable to work and having a child there were other stresses to deal with now. Finances had always been a problem and was a much bigger one being that I was to ill to work. I won't talk about disability benefits at this time but it may well be worth discussing later.

Jumping ahead a few years.... I met my current husband on a CFS group online. Three years and two visits later we finally were able to be in the same place at the same time and got married. Did I tell you my husband also has CFS, FM and MCS ??? And yes, this makes for other complications! But ten years after we met and we're still together... !

So now you know a bit about my background and next time I can start out by imitating Joannie Rivers and ask "Can we talk???"

Whew! This is it ! All done.

Who me, A blogger?? aka Insanity sometimes strikes twice in the same place

So why would a lady like me take up blogging? I'm no one in particular, not a celebraty, not even the unknown comic so why set up a blog? Well... I'll tell ya (ya I knew you'd wanna know!).. In all the years I've been on the net and belonged to e-lists and chat groups I've found myself retelling tales a hundred times and my fingers are tuckered from all the tellin'. Having a blog will let me type once and then just post the site, don't ya think? LOL

But there are other ulterior motives too... I have CFS, FM and MCS, which is the main subject of this site. I've noticed that on e-lists and chats those of us who have these terrible "invisible illnesses" have shared info, encouraged one another, compared notes - to a point- but even there it's very difficult to get a full picture of just what it's like to deal with these illnesses daily. I've always wished I had a window (or a very talkative friend!) who would let me catch a glimpse of their reality, see what it's like for them day to day to live with these illnesses... Come to see if I'm all alone or not. And since I've really not found a guinea pig quite willing to bear all to me like that I figured, ok, others are probably wondering just like I do soooo... ok... I'll be the guinea pig.

So here I sit typing out this intro for you all (wake up! not time to doze off yet i'm not done!) so you'll know what to expect in days ahead here----

Perhaps I should warn you though...? I tend to get passionate about some topics and have a tendency to talk about those topics, sometimes a LOT! So here you may well find my comments and opinions, observations and yes, sometimes moments of sanity when I share what I think about anything and everything from politics and disability related things to what it's like living on pennies, the affects on children growing up with sick parent/s ... who knows? You'll just have to drop back by and find out for yourself !

So there ya go. My very first blog! (gee I'm sort of proud of myself! I typed this without previewing or taking a nap! ---ok so you noticed that ;-p. Well hey, I have CFS /FM and mcs... I'm tired!)