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The worst kind of flare and FMS


Well, I made about a million phone calls, and got my car back from the shop. Yeah ! So a few things going right for the day. Tonight we have ritual, for Mid summer, and for the first time in a long time, I need it. It has been a pretty stressed out few weeks. Flare from hell going on.

Tired, does not even begin to cover how I feel right now. It is like someone staked me out under our hot Texas sun and let me bake for a week. Crisp fried to a crackly crunch. As far as my nerves go anyway. I have not had the shakes, in a long time.

Now, those of us with FM, know exactly what I am talking about, but for those of you who don’t, what that means, is the system is so overloaded that: Noise makes you jump, lights stab your eyes, your hands and limbs literally shake, when you try to use them. A mouth like sandpaper, skin so sensitive, that even the wind blowing on it, makes your nerves  jump. Muscles under the skin do this little dance, for no good reason … and all of the tingling, crawling sensations it’s possible to have. And of course, the pain is way over magnified too.

Now the why of all of this is simple, its the nervous system, gone completely haywire, over amplifying  signals all over the place, to where nothing is being felt even close to normal ( or at least, as normal as it gets for us with FM ), as its all in major overdrive. It is the worst kind of flare one can have and I am in it. With little to do, but grit my teeth and hang on, until it passes.

The pain all of this brings, thankfully, I can at least tone down, even if I cannot get rid of it entirely, as my doctor finally gave me some real painkillers, wimpy though they maybe. I take two of them at once, as one at a time every 8 hours, doesn’t even put a dent in it ! But I behave, and only take two in any given day, which is just what she allows for.

So taking it as easy as I can on myself here, which is not saying much, as there is a lot to do, and I will just try and hang together long enough, to see the things done, without working myself right into my bed.

Actually bed sounds good, right about now… but “things to do and people to see” as the saying goes, so will have forgo that..for now.

More soon..

Esta

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External stress, overload and FMS


I feel beat, busted and generally, infuriated, and trying hard to just, chill out. As I know full well, I am not helping myself here. But, let’s face it, sometimes life hands us things, that would piss off the Good Humor man ! Today was one of those days. We with FM, do not deal with overload, very well. That said, and more on it further down, a peek into my day. Pardon me while I vent a moment.

My car has been acting up pretty bad and I put it in the shop. Now some 6 mts ago, I had the front tires replaced, and a new ( to me anyway) rim put on, as the old one was bent.( With the pot holes we have here in Texas, no surprise ) But anyway, so replaced rim, that should have been the end of it, right ?

No such luck. When my mechanic got into the front end work a few days ago, he found that half the spindles the lug nuts go on, were broken ( including one they had recently replaced) and that both rims, were broken. Not only that, he found that the rim I had replaced, was the wrong size for my car.

Now, understand, I was back in that tire shop, no less than 5 times after getting the rim, as the tire would not hold air and the slight shake in the front, that started when they put it on, just got worse over time. Which they insisted, was not their doing, and had nothing to do with their parts.

My car man, who does all my car work ( but does not do tires ) is such a blessing, as he went out of his way, and took time out of a very busy shop, and came with me, to confront the person who sold me this rim. He even had his people, come to my house and get me.

He did his best, with his fellow shop owner and long story short, he was NOT impressed with the other shop owners behavior. I will not say what he really said, but let’s just say it was rude, and let it go at that. I could not follow it all, as they all spoke Spanish. But I know in general, what was being said.

So now, the entire front end tie rod ends, have to be replaced. Which I cannot lay at the tire stores door, as much as I would like to, As I was told of this problem, some time ago.

I am real suspicious of the fact that it started to “show “problems AFTER they got their hands on it, but cannot stay for certain, they created them. But their error’s did not help matters, and accelerated it into a major problem, long before it needed to be, that I can say, and have it be a fact I can be positive of.

Their error’s were A: the rim was the wrong size for the car, as I said. And the man who took it on and off, umpteen times, really loves his air wrench, as in grind, every time he put it back on. This despite me telling him over and over, don’t DO that. Not to mention, I have my doubts on how well he can use a tire machine, as if you do it wrong, you can mess up a perfectly good rim.

Now, as if all of this were not enough, the owner of the tire shop, seemed bound and determined to try and sell me a set of brand new rims, for a $100.00 bucks no less ( credit on the old used rim and normal price on the other new one ) I told him no way, I could not afford that.

( Not to mention, those used rims they all sell, are pure profit, as they cost them zero, as they are traded in when someone buys new rims, so he had already made money on it from me. Then had the gall to act like he was being generous, in that he would “credit” me the money I already paid him. In short, he was giving me almost nothing with that deal, he was just trying to make another $65 bucks off of me. The grand total of his so called discount ? $ 15.00 bucks ! )

To my mind, he owed me both rims, and the price of the spindles, at the very least. As the rim on the other side, should not have broken, and likely would not have, if not for his man’s mistake of putting one on the other side, that was the wrong size, making the whole thing, shake.

So, he finds yet another used rim and replaces the one I bought, for free as he said, which it was not, as I had already paid for it,( which I will have to keep a sharp eye on, as I no longer trust them ) and then has the nerve to tell me, that “sorry, don’t have another one for the other side, but you can still have the deal on two new ones for $100.00”

He told me this, after my car man left, as that was not how I understood things, while my car man was still there. So he was trying hard to cover his own mistakes,  and to make sure I never came back in again with rim problems. I can appreciate that from his point of view, but to try and make a profit on me, again, besides ? Can you say, rip off ? !

Now by this time, I am ready to spit nails. As this man, whose employee, totally messed up with the first rim I bought, aggravated, if not outright caused the front end problem ( to the tune of $300.00 + for repairs ) and then he DARES try and get me to pay for new rims !

No offer to even pay for the broken spindles, no offer for even token help with the price of the damages done. Never mind the fact that me running around with the tires in that condition, they could have literally, flow off the car, at any time, risking my life and anyone around me.

Which, if I wanted to press the matter, might be a good case for a lawsuit. I thank all the Gods for watching over my little car, that such an event, did not happen,

Well, by this time I had had enough of dealing with this man. I said to him, put the old one back on, I am leaving and you will never see my face again, while inside I am thinking ( insert many nasty words here ) and left, for a tire shop across the street I had dealt with before.

They remembered me and even gave me a good deal on a decent rim and made very sure it fit right, before they put it on. They even balanced it and all, for free for me. Thank the Gods for “Good” business persons 🙂  as I really needed that just then.

What this has done to my FM:

Now mind you, this was after getting almost nothing for sleep the day before, and a very busy day ( see my last post before this one, for details on why )  so I am wiped, flared, and felt like general crap, as soon as I opened my eyes this morning. It is over 105 degrees out there to boot, and I am having to deal with all of this!

I feel like they put ME under the car and used my head for the tire jack. Home now and feeling a little better, re hydrated, some pain killers taken and telling them to “hurry up”. But my point is, not to just tell you of a dreadful day, but to point out just how easy it is, to get into a major overload with FM, just in day to day living.

As these things happen. It’s hardly the first unethical business I have ever run across and I will take the proper steps, report them to the BBB, things like that, but the stress my body was already under for lack of sleep, spent all day at the clinic getting tests done etc the day before, now being combined with major emotional stress, and a body that was trying, desperately, to adapt to heat that is the highest yet, this summer. I am in a massive flare.

We with FM, just cannot deal with too many stressful things, at once. I was already stressed over having to put yet more money in the car, in the first place.

Our bodies, are already under massive body stress, on any given day of the week. Then I made the mistake, and I will admit it was a mistake, to let the Tire shop man, upset me.

What does emotional stress do to us ?:

Taking  just the body effects, they look like this…

Frequent headaches, jaw clenching or pain

Gritting, grinding teeth

Stuttering or stammering

Tremors, trembling of lips, hands

Neck ache, back pain, muscle spasms

Light headedness, faintness, dizziness

Frequent blushing, sweating

Cold or sweaty hands, feet

Dry mouth, problems swallowing

Frequent colds, infections, herpes sores

Rashes, itching, hives, “goose bumps”

Unexplained “allergy”attacks

Heartburn, stomach pain, nausea

Excess belching, flatulence

Constipation, diarrhea

Difficulty breathing, sighing   

Chest pain, palpitations

Frequent urination

Increased anger, frustration, hostility

Depression, frequent or wild mood swing

And that is just some of them. So no, we can ill afford, to allow external events, stress us out, no matter what the provocation is. Now, do we all do this ? Sure, but realize what it will do to yourself, and back up and back off, as soon as you get your wits about you, and you will fare better, over all.

More soon..

BB

Esta

Limiting yourself and FMS


Well, got up too late to get all the phone calls I wanted to make today, as I had other things that HAD to be done today, too. If I have learned nothing else with having FM, is that some days, you just can’t do it all.

That used to really piss me off, but getting all stressed over it, would just make ME feel worse, so what’s the point ? My to do list sometimes, is like a rock hanging over my head. And some days it seems like the rope is a bit frayed and is libel to drop on me, any moment. But again, what good does it do to fret over it ? How much energy I have in a day, is limited, and once it is spent, that is it.

Pushing myself into a flare, which means crash and burn, is not productive, as then NOTHING gets done, so one learns to except the limits, and consider what you are able to get done for the day, the best you can do, and that’s all anyone can ask of us, even ourselves.

More soon..

BB

Esta

Letting the Dragon that is FMS, sleep


I was able to get up, before the alarm went off today.. yeah ! Now I know it seems a silly thing to be happy about, but it is one of those rare events. The storm blew itself out to sea, and it’s a bright sunshiny day out there, which is slated for the entire week. So here is hoping the flare settles out.

I manged to get some work done today, and was going to go shopping too, but I figured naw, why push it. Starting to feel half way human, and I do NOT want to walk over to the Dragon that is FM, while it’s just starting to doze off and kick it and wake it up. It is not wise 🙂

Letting the Dragon, sleep, a thought near and dear to my heart, I have a whole page on it, on my FM site, but what it basically means is, finding a balance point with FM. To find a level of activity and medications, that lets the beast at least doze, and no one in their right mind, is gonna walk over and whack it one, by overdoing it, if they can help it.

Now, this stance is good for us, even if it is real tough to learn how to do for what are generally type A personalities, which is most people with FM, but it is stance on life that is very hard to understand, for other people.

On days like this, when you say, no, not doing X ( fill in the blank) as you have reached a point of, not entirely miserable, and if you happen to say that out-loud, you often get.. the look.

Now the look can be for a variety of reasons, but most often it is due to the fact, that you seem, perfectly normal, and in fact, you seem to be doing pretty good for the day, so they often cannot understand why you do not just get up and hustle.

Now, when you have been in a major flare for days, ( weeks etc) tempting that to return, is just not something a sane person, is going to do. And hopping up and running off like the energizer bunny is almost a sure bet of going right back into the flare, that you are just now coming out of.

But dang is this hard to say, even to yourself. You cannot help but think, ” but I have things to do !”  as your to do list, stares you in the face. But you have to come to the realization, it’s either walk softly, or FM will be the one with the big stick and it will not hesitate to whack you all over your body, if you tempt it.

Now, I have to go out tomorrow anyway, to a doctors appointment, which will likely be a “sit down and have tea” talk, before we get into anything major, so tomorrow is soon enough for the shopping ( besides, it saves gas and given todays prices, thats a real consideration ) So today, I will let the Dragon sleep and hope, I dont wake him up, tomorrow.

More soon…

BB

Esta

Rationing out energy and pacing yourself FMS


Pacing yourself, is a major deal when you have FM. Just to give you an example, let me tell you about my day. I am more than a bit wiped out right now, for what I consider, a productive day. I got all the calls I could make, done.

My Doctor has a approved a re-visit to the GI clinic and I am going to have to strong arm them, into doing something about the GI issues. The household aids I asked for, is being handled, and other appointments I can make to deal with other issues have been approved, I have a list lined up for tomorrow, plus I got some shopping done and my medications picked up. This for me, is a busy day.

Now notice, we are talking two stops with the car, shoving around a heavy cart, and half a dozen phone calls, and I am sitting here, so tired I could likely nap, if I lay down. My day started, 3 hours ago, and I have just about used up my store of energy for the day. Unless I can recover a bit, we will see.

This is normal, if you have FM. One burst of on the go, is about all your good for, on any given day. Now, I could keep pushing myself, however that just courts the infamous Push-Crash cycle, that we with FM, are so familiar with. Where you extend beyond your energy ratio for the day and Crash and burn, into a flare and wind up spending days or weeks, in misery. So if you are wise, you learn to pace yourself.

To many people, this pacing is unacceptable, it means to many, that we are lazy, unmotivated, or just plain malingering. I know as have been told all of these things, to my face, by laymen and professionals, alike.

To them, to limit myself means, I have “given up” and ” let the FM win”. News, it is not a game, or at least, not one you can win if you wanna look at it that way, as FM holds all the cards here, you either play the game by its rules, or you pay for it, dearly.

A wonderful way to explain this concept was given to me by a fellow FMer, a lady who has Lupus, started the movement, called spoons. She was looking for a way to explain to her best friend, what a day living with a chronic disease, means.

She gathered up all the spoons in reach  in the restaurant she was sitting at, and told her friend that each one represented energy one needed to DO anything. She gave all these spoons to her friend, and then took one away, for everything that would cost her energy. Her friend finally began to understand, what it meant to ration out what energy you have. Please read the full story.. here

More soon…

BB

Esta