an explaination of sorts -
Feb. 15th, 2005 11:05 amwhy is being in the cold *such* a big deal for me? Why do the weather changes matter that much to me? What exactly does it mean when I am having a "flare up"?
One of the biggest things about having chronic fatigue is that I am in pain pretty much all the time. It is pretty rare that I feel *no* pain at all. I know lots of people in a similar place, for various reasons. I have *no concept* of not being in pain in most of my body. *none*. I have had this since i was 9. I don't *remember* what it was like to not hurt constantly.
So let's talk about that pain. Most of the time it is a dull ache everywhere. Like, um, the ache that you get when you do a lot more physical activity than you are used to - the next day you ache in those muscles just like I ache all over most of the time. Then there are times when the barometric pressure changes, higher or lowers. At these times, my pain increases ten-fold. So what we *NOW* have is more like the pain you get when you stub your toe hard enough to make it change colors, but not break it. Being *exposed* to extreme temperatures (like the 40 minutes in the icy cold this morning) means that my pain goes up even further. Like papercuts in saltwater, everywhere.
The Chronic Fatigue (and Fybromyalsia as well, which I do NOT have - but I include for reference as we all know several other people who do have it) makes all of the nerves in your body really sensitive. This means that on REALLY bad days all I can do is sit in the bathtub to stay warm and refresh the water a lot, because putting on CLOTHING of any kind is painful.
For those of you that are *unaware*, I have had 2 heart attacks, a hysterectomy (with about 14 years of severe cramping due to my guts being all tangled up), and dislocated my knee 4 times. I know pain. I have had cuts and scrapes and scratches, bruises and burns (sunburns that were BLUE** even).
I would put the pain I am in *currently* (since the prolonged cold exposure this morning) on par with the Blue Sunburn. Or, for better reference, I put at 8 on the scale of 1 to 10 where 10 is the WORST PAIN I HAVE EVER HAD (which would be the cramps I used to get morphine shots for when I had periods, just an FYI). Other pains on this scale: Hysterectomy 5, Heart Attack 7 (but it had that added "wtf is happening to me, this is fucking freaky, ack" to it), dislocated knee 4, fractured wrist 6, the abdominal migraines I get 9 (they SUCK and I really hope this morning does not throw me into migraine city), getting my hand slammed into a car door 8. The difference being that this happens on a fairly regular basis and stays at about that level for anywhere from an hour to a week.
I would be *STUNNED* if the same scale were not accurate for everyone else I know with these afflictions.
Now then, all that said, the ADDED BONUS is that because my body is very busy expending energy by causing all of my nerves to SCREAM AT THE TOP OF THEIR LUNGS AT ME, it doesn't have the energy it needs for much else. Like, oh... staying awake at work. (seriously, it is becoming an issue for me. I blink and nearly fall over it is so bad, and I can't stop yawning. It is making me crazy. I am sucking down caffeine like it is oxygen and it isn't helping).
So *that* is why the weather changes are something worthy of commentary for me and anyone else with similar afflictions. I know arthritis sufferers are in a similiar place with weather changes and their pain, I believe (please correct me if I am mistaken, I would like to know for sure) that for arthritis sufferers that pain is only in the areas the arthritis affects.
and I am not spelling this out so everyone can feel sorry for me, and this isn't whining (oh, pooor meeeee, oooh the paaiiin that is my liiiiffffee *ahem* :P - seriously, when I am whining, you can TELL, it usually includes phrases like "NOT FAIR"). It seriously just occurred to me that most of you probably had NO CONCEPT of why I was on about this or what the hell any of this meant. Some of you may have even thought I was being a big baby about it. Go back and re-read the other things on the pain scale if you do, and consider the fact that I took those things in stride when they happened, just as I am taking this in as much stride as I can.
I do the best I can with what I have to work with. Now you know what I have to work with.
**Sunburn colors go: pink, red, dark red, purple, black, blue, white. If you go to white you might as well just right that part of your body off forever because it is going to need a graft.
In the Immortal worlds of Westley (Princess Bride) "Life is Pain, Highness". Or at least *mine* is.
One of the biggest things about having chronic fatigue is that I am in pain pretty much all the time. It is pretty rare that I feel *no* pain at all. I know lots of people in a similar place, for various reasons. I have *no concept* of not being in pain in most of my body. *none*. I have had this since i was 9. I don't *remember* what it was like to not hurt constantly.
So let's talk about that pain. Most of the time it is a dull ache everywhere. Like, um, the ache that you get when you do a lot more physical activity than you are used to - the next day you ache in those muscles just like I ache all over most of the time. Then there are times when the barometric pressure changes, higher or lowers. At these times, my pain increases ten-fold. So what we *NOW* have is more like the pain you get when you stub your toe hard enough to make it change colors, but not break it. Being *exposed* to extreme temperatures (like the 40 minutes in the icy cold this morning) means that my pain goes up even further. Like papercuts in saltwater, everywhere.
The Chronic Fatigue (and Fybromyalsia as well, which I do NOT have - but I include for reference as we all know several other people who do have it) makes all of the nerves in your body really sensitive. This means that on REALLY bad days all I can do is sit in the bathtub to stay warm and refresh the water a lot, because putting on CLOTHING of any kind is painful.
For those of you that are *unaware*, I have had 2 heart attacks, a hysterectomy (with about 14 years of severe cramping due to my guts being all tangled up), and dislocated my knee 4 times. I know pain. I have had cuts and scrapes and scratches, bruises and burns (sunburns that were BLUE** even).
I would put the pain I am in *currently* (since the prolonged cold exposure this morning) on par with the Blue Sunburn. Or, for better reference, I put at 8 on the scale of 1 to 10 where 10 is the WORST PAIN I HAVE EVER HAD (which would be the cramps I used to get morphine shots for when I had periods, just an FYI). Other pains on this scale: Hysterectomy 5, Heart Attack 7 (but it had that added "wtf is happening to me, this is fucking freaky, ack" to it), dislocated knee 4, fractured wrist 6, the abdominal migraines I get 9 (they SUCK and I really hope this morning does not throw me into migraine city), getting my hand slammed into a car door 8. The difference being that this happens on a fairly regular basis and stays at about that level for anywhere from an hour to a week.
I would be *STUNNED* if the same scale were not accurate for everyone else I know with these afflictions.
Now then, all that said, the ADDED BONUS is that because my body is very busy expending energy by causing all of my nerves to SCREAM AT THE TOP OF THEIR LUNGS AT ME, it doesn't have the energy it needs for much else. Like, oh... staying awake at work. (seriously, it is becoming an issue for me. I blink and nearly fall over it is so bad, and I can't stop yawning. It is making me crazy. I am sucking down caffeine like it is oxygen and it isn't helping).
So *that* is why the weather changes are something worthy of commentary for me and anyone else with similar afflictions. I know arthritis sufferers are in a similiar place with weather changes and their pain, I believe (please correct me if I am mistaken, I would like to know for sure) that for arthritis sufferers that pain is only in the areas the arthritis affects.
and I am not spelling this out so everyone can feel sorry for me, and this isn't whining (oh, pooor meeeee, oooh the paaiiin that is my liiiiffffee *ahem* :P - seriously, when I am whining, you can TELL, it usually includes phrases like "NOT FAIR"). It seriously just occurred to me that most of you probably had NO CONCEPT of why I was on about this or what the hell any of this meant. Some of you may have even thought I was being a big baby about it. Go back and re-read the other things on the pain scale if you do, and consider the fact that I took those things in stride when they happened, just as I am taking this in as much stride as I can.
I do the best I can with what I have to work with. Now you know what I have to work with.
**Sunburn colors go: pink, red, dark red, purple, black, blue, white. If you go to white you might as well just right that part of your body off forever because it is going to need a graft.
In the Immortal worlds of Westley (Princess Bride) "Life is Pain, Highness". Or at least *mine* is.
no subject
Date: 2005-02-15 07:45 pm (UTC)This is true, for osteoarthritis. (I can't speak about rheumatoid arthritis, which I am grateful about.) I have it bad in both thumbs (as does my mother, who is probably going to need joint replacement), and it's starting to creep into my other fingers, but it's *only* those joints that hurt. But, when it's the hands, that kinda limits a lot of things. Cold = not so good on the pain scale. Cold + wet = lotsa hurt, plus limited mobility. Cold + wet + falling barometer (as in, when it snows, which is one of the reasons I don't like the stuff) = my hands are close to useless. (It's become close to impossible for me to actually write on paper in cold weather--my hands can't take it.)
I know nothing I can say will make it better. When you hurt, you just hurt, and cope as best you can. But explaining it so people understand is good.
no subject
Date: 2005-02-15 07:55 pm (UTC)I am sorry to hear it is creeping up your fingers. that sucks. :(
and yeah, Snow=THE SERIOUS SUCK.
There are times when I really *can't* leave my apartment. Hell, I can barely move *in* my apartment (hooray for laptop computers that can be used in bed).
It just occurred to me that there *were* people on my friends list that had no concept at all what living with pain meant. Let alone that having CFS or FM *means* living with pain. It is the biggest frustration to having these illnesses for most of the people I have spoken with - the fact that the problem is mostly "invisible" (not easy to see for the outside observer) - It means that we are often labeled as "lazy", "weak", or "whiney" because it is really HARD for us to do the things that people who don't have this kind of pain do without thought. These are people who have never had to *crawl* into the bathtub or out of it in their lives.
I am just glad that I have managed to keep my eyes from watering too much from it. ;) It makes it hard to get work done when I can't see the screen. :D
I am thinking that I should probably just break down and *take* some drugs for it. I just *hate* taking drugs all the time. Swollowing pills is an expenisive and annoying hobby.
I hope you are doing okay today yourself. Does it help if you can keep your hands *warm*? I know that it helps me if I can keep all of the parts of my body on an even temperature keel, and my mom has arthritis and I know she uses a heating pad to loosen up her joints. Does that help you too, or is it more a matter of humidity and barometric pressure?
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Date: 2005-02-15 08:10 pm (UTC)Humidity and barometic pressure cause the most noticeable changes--I can get sore thumbs during summer rainstorms--but cold worsens it because it slows my circulation and therefore my ability to keep myself warm.
I have the beginnings of arthritis in my left hip as well, and an injury to my left knee, both of which can sometimes complain about cold/damp weather.
I don't like taking a lot of drugs either, and have actually been working on cutting back my ibuprofen intake (I'm so far not on any 'scrip meds for this stuff, thanks to a smart doctor who taught me how to take OTC meds intelligently). But sometimes, it just hurts too much, and the meds will ease it.
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Date: 2005-02-15 08:17 pm (UTC)no subject
Date: 2005-02-15 08:35 pm (UTC)no subject
Date: 2005-02-15 08:20 pm (UTC)It should kick in at about 12:40. only 20 more minutes.
It is good to know that keeping your hands warm does help. It certainly makes you much easier to get gifts for suddenly! I am thinking you need some microfiber yarn mittens for when you are *not* typing. :) Now I am wondering if they *make* them. *sigh*
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Date: 2005-02-15 10:33 pm (UTC)Yeowch.
Date: 2005-02-15 07:50 pm (UTC)I have Fibromyalgia. I understand what you are saying when you state that all your nerves are screaming at you at once at the top of their lungs. I so hear that.
I don't have CFS though, but it is very similar to Fibro and I know a few people with it. It truly sucks. I feel your pain, eh, sort of. :) Let me know if you ever need an errand run or something because you are too hurty. I understand and would never accuse you of whining over it. I keep my mouth shut about it these days too and suck it up.
But it just isn't FAIR. *grumbles*
Re: Yeowch.
Date: 2005-02-15 08:23 pm (UTC)And nope, it isn't fair. But nothing is really. *sigh*
I guess my getting it so YOUNG really made the lack of fairness in life sort of a given for me. I hadn't even reached my prime yet, when I was "cut down".
All we can do is our best. If it isn't good enough for some people, they can fuck the hell off. Because doing your *best* is just that. And you can tell them *I* said so. :D
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Date: 2005-02-15 07:50 pm (UTC)I'd like them to have to shoulder even half of this, just for a week, so they can get somewhat of an idea what it's like to live with constant pain.
Bitter? Why yes I am tody because it's one of those days for me, plus I'm sick and I just want to go home and work won't let me and I know the longer I sit here, the worse it's going to get and the more miserable I'm going to be.
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Date: 2005-02-15 07:58 pm (UTC)and yeah. that is a lot of why I am posting this. It doesn't make me whiney that people don't see my pain, it makes me ANGRY that they treat me like a whiner because I can't do stuff.
*gentle hugs* soon lady, soon you will be able to go home and wrap up tight in soft blankets. :) Or crawl into a bathtub.
no subject
Date: 2005-02-15 07:56 pm (UTC)Have you tried Jin Sjin Jyutsu? It was one of the only things that worked on my back and migraines. Unfortunately, my practitioner moved out of state. I did find a listing for one in Seattle though.
no subject
Date: 2005-02-15 08:27 pm (UTC)I've never heard of it, or at least not by this name. What is it?
I have done:
-Medicinal Roller Coaster (wheee, it's the parade of drugs!)
-Vitamin therapy (which helps)
-food elimination diets (over and over... once every 8 years. BLEH!)
-Chiropractics
-Massage Therapy
-Yoga
-Meditation
-REiki
-Primal Scream Therapy
-Escapist Therapies (like total emmersion video games, eg.)
-Herbal/Shamanistic therapies (including Chinese herbal medicines)
-Occupational Therapies
-Positive Thinking and Actualization
-Zen
-Accupressure
So, I have no idea if I have tried it. About the only thing I haven't tried is accupuncture. But it is out of my price league currently.
no subject
Date: 2005-02-15 09:04 pm (UTC)Thanks to Sarah, a lot of Pete's freaky stomach problems have settled down.
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Date: 2005-02-15 09:31 pm (UTC)no subject
Date: 2005-02-16 12:16 am (UTC)I was thinking about this while I was out and wishing I was home. I realized that I might have sounded like I had a solution, I don't, not really. I assumed that you had most likely tried everything under the sun that you could find to try. It doesn't look like you came across it from your list.
I only know about it because my back was so terrible that my yoga instructor told me that I wasn't able to do yoga and referred me to my old practitioner.
There is a book about it called The Touch of Healing written by Alice Burmeister/Tom Monte. It doesn't have nearly enough information. However, it is a good companion to Jin Shin Jyutsu treatments.
Jsut a thought and I hope that you feel at least a little better soon.
no subject
Date: 2005-02-16 01:46 am (UTC)I write more in other people's LJs than I do in my own, because yours is better
Date: 2005-02-15 08:04 pm (UTC)I have a very high pain threshold. I ignore a lot. I'm good at sublimating pain. And this is bad, on a scale of "uh" to "FUCK THIS."
I need to post something soon about "NO, I am not DEPRESSED, I am in PAIN and my reactions to things reflect that." I am not a deliberately stupid, bad, difficult person, or at least that's not my aim. I'm just dealing with something nobody seems to understand. I wouldn't wish this on anyone, but I do wish people could somehow know what it feels like, and the effort I'm making.
My clothes hurt.
Re: I write more in other people's LJs than I do in my own, because yours is better
Date: 2005-02-15 08:34 pm (UTC)I figured it would be useful for all of us with this to have it written out somewhere that could be pointed at. Later I will also be writing about the Saintliness of those that live with those of us in constant or chronic pain. Spydrman is pretty amazing to have stayed with me this long, all things considered. I am not always nice or fun when I am hurting. And he takes really good care of me and has realistic expectations of my capabilities when I am low (so much so that he has a tendency to reality check *my* ambitions on occassion).
and for the hurting clothes:
#1 - I feel your pain, litterally.
#2 - they make microfiber chenile type yarn socks. You need a pair or 20. I need about 15 more pairs (I currently have *1*). They are available at Target and Fred Meyers at least (about 6-8$ a pair). They ROCK, really really ROCK. If you can spare the cash for them, get a pair.
#3 - I wish I could afford to have all of my clothing made from microfiber. Most of it polar fleece microfibre, or the stretchy microfiber - so that it does the squeeze total contact thing - I like that constant pressure better than the random, can't anticipate it, pressures.
Re: I write more in other people's LJs than I do in my own, because yours is better
Date: 2005-02-15 09:07 pm (UTC)Re: I write more in other people's LJs than I do in my own, because yours is better
Date: 2005-02-15 09:21 pm (UTC)Re: I write more in other people's LJs than I do in my own, because yours is better
Date: 2005-02-15 09:28 pm (UTC)I am currently wearing a lot of GAP (Goth American Princess?) Body stuff - pajamas, really, but they come in black. Super sheer cotton with a lot of stretch. What works best for me is rayon jersey with some lycra in it, the mothwing-soft thin kind. I can feel my way down a rack of clothes and know what'll hurt and what'll be tolerable. Fall of the House of Usher and all that. Mmmm hmmm.
Personally, I like heat very much. It sinks in. I'm not good with the glare in my eyes, though. The sun at that IDIOTIC new building is messing me up badly. Everytime I read another puff piece on it, I'm thinking "yeah, and I'll write the followup story." They need to fix that fucking place.
I always edit out swearing and obscenities -- I'm on constant guard against using the word BULLSHIT BULLSHIT BULLSHIT with management type people, so yeah. Maybe I'll borrow from it and write my own explanation of my specific situation.
Re: I write more in other people's LJs than I do in my own, because yours is better
Date: 2005-02-15 10:15 pm (UTC)and when I am at home i have taken to wearing my stretch velvet clothes inside-out.
Can you wear some sort of anti-glare glasses at work? I have anti-glare sunglasses that I picked up for just this sort of deal. I am going to be popping them on shortly, actually. senses are highly overloaded.
and yeah, reworking it for your specific situation is a good plan. :)
Re: I write more in other people's LJs than I do in my own, because yours is better
Date: 2005-02-16 01:34 am (UTC)Oh, I'm wearing some pretty good sunglasses, and I just got a big hat with a swoopy brim. It's all ridiculous, of course. This is library work. I don't know what they're smoking in Amsterdam, but blazing glare in the eyes isn't my idea of "natural lighting." Idiots.
On that note - I think I'm going to design some clothes specifically for coddling nerves. Swoopy soft mothwing stuff with no hard edges.
Re: I write more in other people's LJs than I do in my own, because yours is better
Date: 2005-02-16 01:47 am (UTC)no subject
Date: 2005-02-15 08:59 pm (UTC)It is good to be reminded that lack of pain is not the default condition for some people. I feel fortunate that, for me, it is.
Be well.
:) thanks!!
Date: 2005-02-15 09:26 pm (UTC)and yeah, too much hot is just as bad as too much cold. And it is like a different flavor of pain, just as strong. The pain I feel today is like a broken/shredded/torn sort of pain. The pain I feel in high heat is like an acid/burning/searing sort of pain. Both equally ugly, but slightly different flavors to them. Or, to put it another way, this is a purplish red sort of pain and that is a toxic yellow orange sort of pain. Both make me want to scream and claw my body apart cell by cell though. *sigh* Not that I COULD or WOULD, I just WANT TO. :)
and I am really glad that your default setting is painfree. I wish it was true for ALL Of us. :D
*and* I am being as well as I am able.
Re: :) thanks!!
Date: 2005-02-15 09:31 pm (UTC)Re: :) thanks!!
Date: 2005-02-15 09:39 pm (UTC)And that subconscious anxiety/fear is crippling.
no subject
Date: 2005-02-15 09:32 pm (UTC)I've found certain little things that help a bit with some of the problems so that's nice but it's still always there.
I was a very energetic and healthy kid till I was 12-13. I got Mono Really bad when I was 13 and as I like to put it I just never got completely better. I can remember what healthy feels like and this ain't it. It doesn't help that I went through a lot of physical trauma as a kid that has added to the various issues.
It's interesting though, I get a lot of people who think I'm faking it because I don't act like I'm in pain all the time and I keep having to explain that I feel like this all the time, if I didn't get used to it and learn to move on with my life I'd spend my entire waking moments in tears and that's no way to live.
no subject
Date: 2005-02-15 09:51 pm (UTC)She had gotten it in her head that because I would go and do things I REALLY wanted to do, that I didn't feel bad those times and, therefore, did not feel bad EVER and was just faking it. *rolls eyes* My mother accused me of being a hypochondriac for about 8 years, pretty much every other day. It is kind of a sore spot for me. Granted, she has apologized profusely to me for it now - and she is VERY appreciative of what my life has been like (she came down with FM about 7 years ago). But it means that I am *HIGHLY* intollerant of people treating me like I am *pretending* to be sick - nigh unto violence, as nothing makes me as mad as quickly.
*hugs* It *is* no way to live. Not at all.
no subject
Date: 2005-02-15 10:02 pm (UTC)no subject
Date: 2005-02-15 10:16 pm (UTC)hallelujah.
no subject
Date: 2005-02-15 09:43 pm (UTC)Mine all started with a full-blown CFS (or something very like it) attack in 1994 - there was a stretch of time that simply sitting on the floor of our tiny place and putting toys into a basket next to me for 10 minutes was a ticket to complete exhaustion, and pretty much every mobile joint in my body screamed constantly, and doubly if it had to actually *do* anything (picture me picking up the coffeepot with both hands and still crying from the wrist and shoulder pain).
It lessened after a year or two, the exhaustion abated to some degree (never returned to my original state though) and *some* of the joints quit hurting. I developed a nifty social life and everything! The past couple of years though, the joint pain has gotten worse... the fatigue was really bad again for a while, but it turned out that was severe anemia, and a hysterectomy fixed that.
Still, a day of doing stuff in Seattle, or going out in the evening, pretty much requires a day of recovery after. A day of doing something physically taxing, you better make it two days.
But yeah, I know exactly what you mean about trying to explain to people what it's like to live with chronic pain. It's almost shocking to me when I take some sort of painkiller, and after the worst of the grogginess wears off, I realize I DON'T HURT! ANYWHERE! for a little while. I can't take ibuprofen or anything like that - ulcers :-(
Maybe we should have a special event just for the owie-goths, go soak in hot tubs somewhere or something like that.
no subject
Date: 2005-02-15 10:26 pm (UTC)The ulcers - ack. ow. ew.
I am glad you got through the worst of it. I made a community for those of us that don't let the cfs/fm stop us from having LIVES. :) you should check it out.
no subject
Date: 2005-02-15 10:35 pm (UTC)I use a wheelchair when I go out shopping and anyplace that I'm going to have to spend a lot of time standing. I used to feel self conscious about that because I CAN walk, it's just that standing for long enough to shop does my back in. And, well, I do a lot of things that someone in a wheel chair shouldn't be able to do, like rapier fighting and working out at the gym. However, I have finally gotten over that, and now do what I have to to ensure that I continue to be able to do those things, which means using the chair. And, anyone who gives me grief (and there have been a few) can just get over themselves.
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Date: 2005-02-15 11:33 pm (UTC)no subject
Date: 2005-02-16 01:44 am (UTC)YAY NEW DRESS!!!
Is it microfiber?
no subject
Date: 2005-02-16 03:26 pm (UTC)And the other stuff? I know you aren't seeking it, but *HUG* that's a lot to deal with, body-wise.
no subject
Date: 2005-02-16 05:02 pm (UTC)It is nice when I *can* stay in the tub all day, alas that is not always available.
and *hugs* right back atcha. Sorry I missed your birthday. :(