How to cope with POTS When Homeless! (For real)

Now, I've gotten pretty used to my heart rate going wild at this point, & usually just try & keep going about my business, maybe taking an extra beta blocker. But sometimes, POTS symptoms come in a package deal.

Chest pain, a nasty feeling of pressure on your carotid artery, numb/tingly feet & hands...along w/the usual tachycardia.
Times like these, I find it is a must to not just lie down, but lie down flat. Sitting scrunched up or half reclined in a car chock full of personal belongings just will not do. So...here is a nice compromise!

Find a nice park with grass not too far from the parking lot.

Lay down a blanket, preferably not one you'll be sleeping with.

Spread a jacket over your skirt if you are wearing one & you like.

Lie down & enjoy the view. Trees, grass, sun, wind... Little squirrels playing peek-a-boo...

Actually, kinda nicer than lying in bed staring at the ceiling, willing your heart to slow down, chest to stop hurting, & neck pressure over your carotid to ease up!

Any Tips?

Oh wow. Seriously. I'm looking for tips. I have a dilemma, and it's beginning to overwhelm me right now. I'm just so tired lately. It's a different tired. I think. I don't know anymore. But I think it's different, because I want to sleep. It's all I want to do. I think usually, or at least more prevalently, when I'm tired, I just feel exhausted, but I couldn't sleep if I wanted to. No, this is different. It's not like I'm sitting down and dozing off...but I do want to just do nothing. Got my "food money" today. Had a nice shopping list I made myself make last night, because I'm trying to minimize the running out the last two weeks of the month. Usually I'm rarin' to go. I mean, it's the only real shopping I get to do, lol! Plus I've been low on stuff, and eating lots of unhealthy stuff, and my stomach is starting to act up. I woke up at a decent hour, and mentally wanted to go (mostly to get it over with!) but my body seemed to be saying to take it slow. So I convinced myself I would go out & get breakfast (which as it turns out they didn't have, because, as I found out a couple hours ago, I looked at the wrong chain's website) and bring it home & eat it. My thinking was maybe I just needed some fuel. So I went out, in SWEATS (gasp! No really, that's a big deal for me, my Mom, bless her, brought me up with a healthy sense of vanity, lol) and NO MAKEUP (I at least always wear eyeliner & lipgloss) cuz, after all I was just going to a drive-thru...but like I said, I went to the wrong one, so at a loss for another option, I gave in, swallowed my vanity and went to the grocery store in the same parking lot to get some breakfast food of some kind. I realized I might as well pick up the double gallon of water they wouldn't have at the health food store-ish place I'd planned to do my grocery shopping at, and then figured I might as well get everything I could get there...Then I came home to resume the rest of my plan, but nope. Can't seem to get back out. I did fill out some & fax some forms for my attorney & e-mail them, but for the life of me I can't get my butt out either to the laundry room, or to the store. I just want to go to bed. (Granted, filling out those forms really kicked my butt, Dysautonomia I guess? I felt like I couldn't breathe, and it didn't let up until I reclined my recliner ALL the way back and lay there for awhile. It's like...an anxiety attack I guess is the best way to describe it. But anxiety attacks don't get better just from lying down, so it's gotta be that. Man, I wish I had a doctor that treated just that....

So I don't know if keeping up with all the doctor's appts is wearing me out, or if it's tapering off the medicine that was causing the anemia, or the sudden shift from summer to full-on winter weather or some of all of the above but it's getting old! I'm trying to spread things out and simplify wherever I can and keep organized but....I'm getting overwhelmed! On the days I have doctor's appointments especially (I usually try & run an errand or two while I'm out) I am just desperate to get home and get in bed! My kitchen actually smells from the dishes not being done and I got tired just now doing one so I could have bowl of soup...cuz I'm suddenly freezing, and somehow spending $40 at the store didn't get me anything microwaveable and slightly healthy. I just microwaved it, reclined to write this in my chair while it was heating up, and now I don't even wanna eat it, I just want to go lie down and take a nap. Maybe I will save it for later and take a nap, call it a day. After all, I WAS thinking earlier how I can't wait for it to be time for bed so I can go to sleep and forget about getting anything else done...Maybe that's the answer? I have a doctor's appointment early tmo afternoon, but I can probably find something to wear amongst the clothes I still haven't put away from last time I did laundry, lol. Sigh...Strangely I'm calm lately though. Thank goodness for small favors...
But anyways, yeah, what do you guys do when you feel like a soggy vegetable?

Sleepwalking through Life

I just took half a tranquilizer. I feel so overwhelmed, it's almost a scary feeling because I feel strangely calm, but with undertones that I could lose it at a moments notice...maybe that's what my new psychologist was referring to yesterday when he said I seemed so calm describing my illnesses, my life, and how it's all affected me. I was tired, and getting to his office 20 minutes away by 1pm took a lot of planning and will power. I think THAT'S the problem. I am running on pure will power lately, so it's bound to make me a little zombie-ish. Have to, have to, have to, must do... I feel like I just need a few days, a week, of doing NOTHING, of everything being easy and effortless. I've been keeping busy. Trying to have a social life, because I don't think I'll make it without one; I can't keep wishing my family would be there for me. I need people who have the capacity to give a damn. But the cost is high. So exhausting.

I'm tapering down on the anti-viral, as per my doc's instructions, and I'm starting to get sore throats again daily, and hoarseness, feeling like I'm coming down with the flu, but then it goes away. (And comes back, the very next day.)

Pain is back full force. It's a whole new type of pain, that makes the aches and pains that (fortunately) were the whispers that I'd learned to live with from the Fibromyalgia seem insignificant. I feel like I have lobster or a scorpion attached to the top of my spine, I swear I can feel the vertebraes; they hurt and they are wrapped in barbed wire, making the skin around them raw and sending shooting pains to random areas of my upper back, almost to my armpits, and sometimes down into my fingers even. I can't even get comfortable lying down much of the time, and my recliner was off-limits until right now. And normally I need to lie down often...Fine, I'll adjust, I'll stay upright longer to ward off that discomfort, but then I start looking for things to do, which is easy, because there are dishes and laundry, but then, if I do those, it will aggravate my back. Catch 22. Yes, I've been pulling out every trick in my dusty pain-management archives of my brain...heat, no, ice sometimes, capsaicin, when desperate and willing to risk the stomach effects, daily anti-inflammatory, shiatsu massager if tolerated, TheraCane for what that doesn't get, an extra muscle relaxer or more than one narcotic class analgesic a day, which I usually would hesitate to do...Fun times are here again! lol. It's ok, I'm seriously laughing, what can I say, maybe my therapist is right and I am getting somewhat Zen? Sometimes? What can I do, one must keep on keeping on, or so they say...

I'm waking up SO tired again. I've slept till 1pm twice this week, and still woken up tired. So much to do at the beginning of the month when I get my little government check. I desperately have wanted to do nothing most of the week and inevitably find that there is something I HAVE to do. Doctor's appointment's to keep. Oil to get changed for the Smog Check I can't afford for the Registration I also can't afford. And then I know telling the shrink that my very soul is tired was right on, because making myself go back out to get some food (can't cook with all the dishes dirty) after 20 minutes of indecision so bad it almost drove me to tears, I pull out of my carport and tear off my sideview mirror on a pole that's always been there, which as it turns out, makes driving so much harder, and adds more money to the things I can't afford but must somehow come up with column. (No, not to worry, I wasn't on any medications I shouldn't drive on at the time. Just a fully natural daze I guess. Plus the neighbor parked her car too close to mine, making me veer to the left myself after pulling in.)

Now reality hits. How the hell am I going to get through all the doctor's appointments I have scheduled for myself this month? (They do kinda have to be now, case is waiting for it) 2-3 a week for a month, topped off by Thanksgiving and birthdays all around, for myself included. Thank goodness the Physical Therapy is right around the corner, but still, I'm not used to being out & about and having places to be feel good or not, so it takes far more out of me than it should. (Or else I'd gladly volunteer, that dilemma is what keeps me away from that, as well as school, so exhausting to deal with letting people down. Right now is about survival, I think that's enough, no?) No, people aren't as much a challenge as they used to be, I was a much bigger recluse last time I had PT regularly. Then, I was just so happy to be around people my age, such a rarity, and they were good-looking, chatty, and gave me massages & made me feel better! And thank goodness because I was becoming a bit tooo eccentric!

Lately I've been graced with kind people and easy conversation almost everywhere I go, now that I think about it. I was actually able to have a slice of pizza at Costco, completely relaxed one day recently, just people watch and feel completely calm and at ease...was it the Pharmacy Tech that shared his experience with the two Capsaicin creams I was trying to decide between? The smile and gracious politeness of the checker, or the easy conversation with the pizza girl? Maybe my energy has shifted and they are just reacting to that. Whatever, I'll take it!

It's later, lately, when I get home, that I can't turn it off. Everything is going but deep inside I'm so exhausted and somehow I can't stop the overdrive and it's hard to handle. Life seems like a big storm of chaos this month, and I'm expecting surprises to boot and there's nothing I can do but walk through the storm, and see what I encounter, hopefully stay in the eye for a bit when I can.

Good news is, I haven't gotten AS sick as I'd feared getting off the anti-viral, though, strangely, supplementing with Zinc seems to be helping a great deal (just ran out and already noticing the difference, ugh) and the Nattokinase & Indole 3 Carbinole supplement I took seem to have done the job, very slight discomfort this month, compared to last, for a much shorter time (although I was on various analgesics before & at the time) and also hardly any worsening of autonomic function, just bit of dizziness, but not even almost completely blacked-out-eyeball-squeezing, headache-inducing kind. Well, I'm sleepy, which is happening early a lot lately, and I'll take it. Going to see a Chiropractor tomorrow, yay? My head keeps telling me this will likely help, even if painful at first (I usually feel like my back is in pieces when I get an adjustment after not having one in a long time, and then better later) but I've never had quite this type of pain before, usually it's muscular, this seems to be all bones and nerves so I'm a little scared. Whatever happens, I MUST get to Costco sometime tomorrow, too, running out of essential meds & toiletries, ugh, wish I could do home delivery! And that damned mirror...Oy. A credit card and someone to help me run errands would be SO handy right now...

Surviving Showers & Kitchens

All I have to say, is BLESS you Adrienne Dellwo. Any time there's even seemingly obscure facet of living with FM or CFS that makes me feel ridiculous and wonder if I'm the only one, she writes an article on it. Not just that, but her articles are well researched, and authorititave.

Tonight, I was thinking jeez, this is so ridiculous, why does it take me so long to get everything done? I can't even rest properly, I go till I can't stand it then I lie down when I can't stand the fatigue/and/or pain anymore, but half the time I get up before I feel all the way better, so I do a bit more, and repeat. And I wonder why it's so hard for me to find a moment to return calls. Everything must be prioritized. Dinner must be eaten, therefore it must be cooked. Even eating wears me out. Little things. Taking out the trash. Cat's litter must be cleaned. Heart's pounding; medication must be taken.

As for showers: I'm lucky it doesn't seem to be that difficult for me lately, because there have been times when just standing there seems like too much, and I'd give my left foot for one of those shower chairs. I almost don't even shave my legs in the shower anymore, my balance is awful and I'm afraid I'll hurt myself. But still, once I get out, the first thing I do once I'm either wrapped in towels or dressed,is lie down! And like it says in the article, there's the temperature thing. In the summertime, I HAVE to have the A/C on after I shower, or else it's useless. And if I have to use a hair dryer or iron, ugh. I may still overheat. Part of the reason I stopped trying to go out to meet people. I get so tired just getting ready... It gets so old and exhausting trying to manage SO many little things. Ah, this is starting to feel a bit whiny. I'll just post the links now, lol.

http://chronicfatigue.about.com/b/2010/11/16/problems-showering-with-fibromyalgia-chronic-fatigue-syndrome.htm

http://chronicfatigue.about.com/od/copingwithfmscfs/ss/cooking.htm

Why is it...

That I'm still surprised that folding laundry totally wears me out? My feet hurt, my legs are sore, my back is sore, I'm sweaty and out of breath (thought that might be my allergies, since the cat is in here). I'm exhausted, and it seems so crazy.

I asked myself the same thing a couple of weeks ago after a trip to pick up some groceries. How is it that something so basic wears me out? And then, how is it that I'm still surprised!?

I don't know...Maybe I just thought since I got a lot sicker for awhile, and even being on my feet was exhausting, that when I got better it would be better. But that doesn't really make sense does it? Because it was challenging before, too.

Sometimes I wonder if in that jumble of cognitive dysfunction there's some kind of disruption in the learning process. (I say this because I seem to also have a much harder time getting anything out of talk therapy anymore...it's like i forget what I learn, so I can't apply it, whereas before it would all click and I could use it, apply it, for years.)

I've had FM/CFS for 7 years now; albeit I've had my ups and downs, but I can't seem to accept so many of my limitations, and I really think it's caused problems with adjusting to my new life... I've gotten better about some things. I use my handicapped placard. I even use GoCarts at the stores if I'm not feeling great. I've learned to ask for accommodations when I need them. (I went to a concert recently and was amazed when I investigated accommodations just how easy it was to get them and what was available, and felt so blessed that they made it easier for me to go and enjoy myself doing something I used to do in my pre-illness days.)

But I still feel guilty asking for help with a lot of things, I still have frequent barely subconscious wars about whether I am letting myself get lazy, or I should try harder. I grew up being a tomboy. I liked to play with the boys, did sports, like running, hiking, mountain biking...I always believed I could do anything a man could do. And now I feel like such a wimp! I can barely carry my own groceries, nevermind the laundry!

Anyone else experience these issues? How do you cope?

Sometimes I so want to go all Buffy the Vampire Slayer on CFS

That's how I felt today.
I just had a compelling urge to karate-kick CFS. But, unfortunately for me, it's invisible! And not only that, it's an illness, so you really can't, I mean, maybe if it was Cancer or something, you could remove a tumor, put it in a jar, and do it, or the karate-kick could take the form of radiation or chemo, but, that's probably not gonna do much here.

I guess I was just upset. I needed to do some research online, and my father wasn't home with his laptop, and my body was sending me the really annoying, barely perceptible but extremely insistent message that I should lie DOWN! ASAP! And I was trying to keep on doing what I was doing, but I couldn't focus, and I kept feeling worse. That's Orthostatic Intolerance for ya.

Grrr. Finally, very frazzled, I got up and lay down. But the frazzled wasn't going away, and I just kept wanting to karate-kick SOMETHING. I couldn't hold still, and I was just so frustrated. Finally a little desperate and unable to lie still, I put on some meditation music.

That has been my saving grace lately, meditation music. Something about those frequencies of sound seem to penetrate and resonate deep within me, and smooth out all the chi that is wrinkled, depleted, or bouncing off the wall. Okay, so I may have taken a Xanax as well. It seems to be a typical thing with me. I get worn out, and I know the only thing that will help is rest, but my mind is still bouncing off the wall, and I can't rest, I keep thinking of things I wanted to get done, or feeling like I should be multi-tasking. Being productive used to be my favorite thing, what made me ME. And now it seems it just drives me slightly mad. Or maybe it's what keeps me going? I can't seem to decide. This week, it seems like I've gotten a whole lotta nothing done. I can't seem to focus. And then, I get tired before I've managed to redirect and refocus to get anything done...I was feeling a bit better after laying there, listening to the music, half conscious, for who knows, an hour or so...

Then I went to the doctor. This doctor, he drives me crazy. I go in, and he asks me what I want him to do for me, like seriously. Not like, "Hi there, what can I do for you today hun?" But I tell him what's wrong, and then he asks me, "Okay, so what would you like me to do?" "Umm, I I was kinda hoping YOU could tell me that?"
(I had a UTI.)
Last time I was there, because he told me to follow up on some test results (for the third week in row, they'd always mess up, or not do them all, or...) And he asks me, "So what medication would you like refilled?"
I look at him, kinda confused...
"Vicodin?" he offers.
I tilt my head and look at him, and say, "Uh...no...that's okay..."
(Did I mention when I went online to check this guy out, there was a blurb from someone saying how he seems willing to give out prescriptions like candy?) I only went because he was one of only two doctors locally who take the County Sponsored insurance plan I'm on...and I already didn't like the other one. Her English sucked.

So I'm thinking, okay, so everytime I go he wants to run tests, take the same x-rays over and over again, and he offerred me Vicodin and I refused. So the last thing I figured I'd have to deal with is him accusing me of drug-seeking...

Well, not quite that, just when I asked him for the scrips, he told me these drugs were addictive, and if I wasn't already I would be addicted to them, and didn't let me get a word in edge-wise until he asked me what I would do if he didn't give them to me...(I'm going to a concert tomorrow, a very big deal for me, and one of the situations where I just take medication because I KNOW I'll be needing it...I rarely take hardcore pain killers when I'm at home, mainly, I use them for when I have to go somewhere, which is why 30 pills last me about 3 months...Normal dosage is 1 every 4 hours, and if I take 2 in one day it's a rare occurence, last time, it was pain from the UTI that wouldn't leave and only after Tylenol ceased to cut it.)
Haha, so do I sound defensive already?

You bet. I live with an illness nobody understands and that (at least at the moment) is invisible to the eye of any casual observer, but that a specialist was quoted in the New York Times as saying that she would prefer to have AIDS than have, because her AIDS patients are healthier than her CFS patients, and most of them can work and have a normal life, while the CFS patients mostly can't!

(Incidentally, I have to agree...If you have AIDS there are so many programs, too. Programs to give you medical care for it, programs to help you pay for your medications, programs to give you a place to live...and if you do get full-blown AIDS, I don't really see a Disability judge turning you away, saying you are too young, or your doctor is being overly generous in his assessment of your disability. So...)

Okay, sorry, this is beginning to sound like a whine-fest. I said I got defensive!

Everyone's going all crazy about this XMRV virus...but at this point I'm afraid to even get my hopes up. Besides, I already know I have another virus, and I can't get the medication for THAT, because I can't afford it. Incidentally, it's an AIDS and Hepatitis med. And if you have AIDS, and can't afford it, they'll hook you up. But if not, you're outta luck.

As for my doctor, I explained to him that I hadn't taken the Vicodin in two weeks, and hadn't experienced any withdrawals, plus, 30 pills lasts me at least a couple of months, and the other med, I take only at night and have gone without for 3 nights, at worst, I got to sleep a bit later, and if he liked I could bring in my medical records so he could see that I take them only as much as I say, and call my previous doctors. Grrr.
How ironic that he was offering me pain meds I didn't need last time!?!
Thank goodness the other reason for my visit was to get a referral to a Rheumatologist! (He looked surprised, asked what for, and looked surprised again when I said, "Because I have Fibromyalgia..." Yup. Seriously. That's why I took my records with my original diagnosis of FM from back in 2002.)
They can take care of all my meds, and hopefully I won't have to go back there for a VERY long time! (Fingers crossed.)

I so wish I could go in that mosh pit tomorrow. Concerts used to be such a release for me...Ah, well, I'm just happy to be going :)

Pace Yourself

Easier said than done right?

Well for me, this has been a huge issue lately. I guess I crashed a couple months back, kinda have to face it, now. It seems odd, because I never seemed to crash like most people with CFS & FM do. If I really pushed it, I might be out of commission for a a couple days, a few at most, and rarely. (Unless you count the 3 occasions when I crashed after going back to work for a few months.) This time, it seems endless, and I'm being faced with the fact that I'm NOT going back to normal anytime soon.

Monday, it took just a trip to the drugstore and browsing through their clearance items, and looking for a supplement to set me off into a downhill spiral. By the time I was on the way to my car, I was feeling woozy, seeing spots, sweating, heart was racing, out of breath, and I'd be willing to bet my blood pressure was plummeting. I rested for a couple of minutes, and unwisely talked myself into going to the next store. I ended up lying down in the car for about 30 minutes, went in, and barely made through the checkoutline before I broke into a sweat and collapsed into the car again. Tuesday I felt like hell. The next days were better; as long as I did next to nothing. Any activity (even getting dressed) left me breathless and weak with my heart racing and exhausted. My blood pressure was having trouble staying up, and the head rushes were getting so persistent that I started getting headaches.

Today, I was frustrated and a bit depressed, and finally decided, screw it. I'm just going to stay in bed all day! (After a brief sojourn on the living room recliner w/the laptop.) I was upset, but finally, after a good free-write and some soothing meditation music, I gave in. It felt good, and I ended up embracing it. I started thinking, hmm. Maybe this is what the doctors meant by resting...Two doctors have told me that. Take it easy. REST. I'm not good at resting though. I feel guilty when I rest. (I think I possibly feel guilty for being alive if I get nothing "useful" accomplished, but...)

Then I read this article titled Find Your Limits - How to Put the Push-Crash Cycle Behind You.
Just the title intrigued me, because I've often lately come to the realization that I don't KNOW how to pace myself, I can't get a handle on it, because I keep trying to be normal, but I HAVE no normal these days...

This article makes things far clearer though; it really makes a lot of sense. Apparently the author runs a website and has courses on pacing and dealing with Chronic Illness. They're not free of course; but if it can help me get a handle on things...maybe it's worth it.

Hmm. I had a realization. I feel kind of ridiculous doing nothing. I'm trying to get over it. Just to see. (Or maybe it's my way of saying SCREW YOU, I can't do what I want, so I'll do NOTHING!) It's occurred to me that maybe part of me doesn't believe I'm sick, because people around me don't seem to (and maybe that's the answer to all the questions I've been asking lately?).

Article: When Working No Longer Works

This article struck home big time. I went back to work 3 different times after being diagnosed. I hadn't realized how much of my identity and self worth were dependent on my job until I couldn't do it. Especially when it became apparent that I was only hurting myself by continuing to try.

Also, to add to the identity crisis, I had been determined to be financially responsible and successful...I had just gotten my first solo apartment, and was a little over a year into my first car loan.

I still struggle... I can't reconcile myself with being poor. It's not what I envisioned for myself, and it's VERY stressful, having to try and juggle things I need and stretch dollars, and most of all, feel constantly deprived of things most people my age take for granted; going out with friends, buying clothes, the newest techno-gadgets...I'd also hoped to travel...Instead I'm juggling prescripton prices, and drowning in copays and other medical expenses.

Instead, I find that my twenties have slipped away, and, far from having bought my first home, I've moved in with one of my parents, in a new town, far from the friends that helped make life with chronic illnesses bearable. Not to mention that instead of getting better I'm getting worse...

And to top it off, I get to put up with people judging me. I had one aunt imply that I moved in to take advantage of my father. My own mother told me to go back to work, because it's okay for her to be disabled because she's of retirement age, and when I've had the gall to ask for help cleaning up, my father told me it's all in my head.

I'm finally beginning to understand that I can't expect people to understand, not my illness, and not my not working. Why should I care anyhow? They weren't there when I made the decision to stop, hoping it wasn't too late to prevent another crash. They weren't there when I tried to act like it was okay because it was the only sensible decision to stop banging my head against a brick wall. They don't know that despite my outward non-chalance, I took a nosedive into a deep depression, or the panic I felt at the uncertainty of my future, so much so that I actually got even sicker after I stopped working... They don't know, and I'm tired of trying to explain myself.

Agh. Sob story, I know. I'm trying to get more positive, I swear!

So anyways, here's a great article from the Fightingfatigue.org blog, I feel for the author, but at the same time, it's good to hear someone describe something I've been through...

ME/CFS & Fibromyalgia: When Working No Longer Works : FightingFatigue.org

Apathy and Houseguests

I've been feeling so worn out lately. Not just physically, but spiritually as well. I'm maxed out on Zoloft, but I think I may still be depressed. It's weird, there's no rhyme or reason to it...Friday I had to lie down about a dozen times or more before finally being down for the count. (Dysautonomia I guess, still waiting to find out if it could actually be a Thyroid disorder; my T4 came out low, BUT I was having all the symptoms of HYPER-thyroidism: rapid heartrate, hair falling out 10 times worse than usual, gaining & losing weight rapidly, being too hyper to relax even though i was burnt out, dry skin and nails...I checked and it is possible to have both if you have a Thyroid Disorder.)

I got up this morning, and for the life of me, I did not feel like doing anything. I even skipped my meds, which I usually take the second I get up. I can't handle being completely useless though, so I went & took them, made myself breakfast, & after a break, took a shower. So much to do around the house, but I got overwhelmed just thinking about doing anything, so I decided it would be enough just to get myself past this dip and keep myself from falling further into a funk.

I ended up just feeling stressed out. I thought of driving to the beach, taking an impromptu trip to see my peeps in L.A., but in the end, all I ended up doing is dropping off some books at the library, and picking up a few things at the dollar store.

I had spent some time on the computer, but the ergonomic mouse I borrowed from my Dad sets off my tricep pain, which totally stressed me out, too much fighting going on...fighting to keep my mood from falling, fighting my body wanting to lie down, fighting to ignore the pain and concentrate on the other two, while cajoling myself into doing something productive.

Things seemed a little better after I got home though.

And then I was having a nice conversation with my Dad, and he springs on me that we are going to be having a houseguest next month. I knew that, and I was warily looking forward to it. (I don't know if this person likes me much, and I wasn't sure I'd be able to be a very good hostess...) I LOVE being a hostess, and hardly ever get the chance to do it. But on my own pretty much? This was going to mean getting up at a decent hour every day, making breakfast, cleaning up...Stuff I barely manage for myself, okay, actually, don't manage very well at all...but still, I was willing to try. I'm dying for some company, and have been dying to get to show people around my new county...It gorgeous here and I love sharing it...and unfortunately, haven't gotten the chance to do it yet, really with any of my closest friends or family because a 40 minute drive is just too much for them...(That's another story though.)

Then today I find out it's not going to be a couple days to a week, like I'd assumed...but possibly 2-3 MONTHS! WHAT?!? And no one thought to ask me if I could handle this? WTH? I explained the drawbacks to this for me...I'm one of those people who needs alone time to recharge, even before I was sick. Plus, well, I have a hard time seeing people when I'm feeling really bad...I mean, lately, I've often thought about what I wouldn't give to have someone visit me, especially on days when I'm practically glued to the bed...but unless I was violently ill, I'd have to make sure the place was relatively clean and tidy, and even if I was violently ill, I'd probably put on a fresh pair of PJs and do my makeup, make my hair presentable, if only in a ponytail...

It's this bizzare personality quirk I have a I guess...I don't mind telling people all about my illness, but I don't really want them to see it. It's like a dirty little secret or something. I just feel very self-conscious, most of all when I'm in pain. Then there's all that guilt, too. I don't want people to feel sorry for me. Sympathy, kindness, and consideration would be nice, but pity, no. And I feel weird asking for help, or letting on that I can't handle something that I know shouldn't be a problem for someone my age...I feel like they'll think I'm being a baby and presume I'm lying. (Which has been known to happen!)

So anyways, the idea of having a houseguest for months seems pretty overwhelming. My Dad says there are other alternatives, but now I already feel like the bad guy. One more thing that I should be able to do that I can't.

Well, hopefully he'll handle it tactfully for once. And who knows, it might end up being nice to have company...either way, I'm a little nervous about the whole thing...but I guess it's too late now...just amazes me that none of these problems were taken into account, I wasn't taken into account, or consulted on the matter...

I have GOT to start looking at affordable housing apartment complexes & got on their waiting lists. The second I get my SSDI approved, I'm out. The fewer stressors I have, the better, so if I can be free of my dysfunctional family dynamic, that would be GREAT...

Fun with weird symptoms...

Well, I guess they would actually fit into the broad spectrum of Dysautonomia. I haven't checked my blood pressure today, mostly because I didn't want to see how fast my heartrate was, but I'd be willing to bet it's pretty darn low, and dropping steadily the more I stay upright.

I hate it. It feels so scary. At least the episodes of super-fast heartbeats are understood, mostly, and still, they can be a bit unnerving when they get fast enough and last long enough.

But it's this other stuff that kills me. It's almost like a feeling that some unseen force is strangling me, smothering me from the inside, and someone let too much adrenaline loose, and I have that crawling almost rushy feeling from my chest down my arms, and up to my neck, which wouldn't feel so bad if I needed to run somewhere, fast, but since I don't, takes on a whole other sensation. I feel compelled to lie down, but just lying down won't do at this point-- I have to lie down as flat as possible, with even my head elevated hardly at all. My muscles are shaky. I was feeling like I couldn't breathe,or a similar kind of desperateness, and the panic this all incites makes me want to do anything but lie down, I feel like I have to do something, find some way to make it stop, but something tells me my body is nearing the edge, and if I don't lie down, something bad will happen, I don't know what, but it's like some kind of explosion building up...getting ready to short-circuit my body. I can't tell if it would be my heart, or my blood leaving my head and making me faint (I see spots) but it wouldn't be good, and it would definitely not feel any better than lying down flat trying to breathe and distract myself from the uncomfortable sensations...So that's what I did, but it's still scary and it takes willpower to stay calm, and as I'm dealing with it all, I have to find some way to distract myself w/this blessed laptop, although my arms feel weak and tired like I'm lifting weights.

This is the kind of stuff about my illness that I absolutely HATE. I can deal with pain. I can deal with fatigue (thought it sucks, having such an active mind). It's weird stuff like this that unnerves me, brings me close to tears, both because it's scary, and because it makes me feel so incredibly alone, and trying to fix it is rather hit or miss.

I'm guessing this is Dysautonomia, but not having been officially diagnosed(well not sure, I might HAVE been...either way I'm going to work on that next week.) I don't have anyone to treat me for it, or at least reassure me, or advise me, or put me back on the right path when I get so desperate I can't think straight. The one doctor who acknowledges the symptoms as something he sees w/his CFS patients doesn't want to deal with it...so here I am.

This has been the kind of week where the truth very grim indeed. I've spent the entire week fighting. Mostly fighting to be upright. I need to be upright not just to leave the house and go run errands, but to tidy up, change the cat litter, make breakfast, work on my computer, chat with my friends, answer e-mails, be part of the world I still am fortunate enough to have when I can't leave the house and don't know anyone for miles.

It's so hard to get every little thing done when you have to keep lying down! I managed to fold a 1/4 of my clean clothes and put them away, because yesterday something else took priority and it took me all day to do, focusing solely on that, and fighting my body's current aversion to being upright the whole time, PLUS pain, and then not being able to focus, followed by not being able to remember why I'm doing what I'm doing as I attempt to switch tasks. I did it. Woo hoo. One thing accomplished all day long, lol. I don't care, it was a victory.

I guess I don't blame people for not understanding why Fibromyalgia is so disabling for me and not for others. I'm kind of beginning to think that the people who can lead more or less normal lives just don't have all these symptoms. Like I said, if it was pain and fatigue, I could manage. It's all the other little things piled on that make it impossible for me to work more than sporadically, even from home. Memory and concentration problems, tachycardia, orthostatic hypotension...When you add those to pain and fatigue, you're pretty much screwed...

Oh well. I'm trying to stay calm. I'm going to load up on gatorade tonight, rest, watch some good shows or a movie, take my meds and supplements, some extra salt and Monday I will call a doctor I know of who I know will more than likely help me figure out what exactly my low T4 test means as well as give me a referral to a Dysautonomia specialist I researched...Wish me luck!

What a WEEK!

And thank goodness it's over! Even though I've been sick for several weeks now, this past week was the roughest yet. Antibiotics for my kidney infection weren't working, so I had to go get more. At that point, I was overheating, having hot flashes and cold sweats, and feeling nauseous. Somehow, I got myself to the doctor's and even got in a good mood. It was weird. I honestly think after spending so much time home in bed sick and not seeing anyone but my Dad, and briefly, my brain was just craving some human interaction like mad!

I guess that's part of why this whole "sicker than usual" spell has been so tough. Prior to it, I had at least 3 doctor's appointments a week. (No, I'm not some kind of crazy, it was physical therapy, or my allergist, or a therapist, lol. Just trying to treat as much as was treatable any way I could. Physical Therapy did wonders btw, I'll have to talk about that!) So, pathetic as it may sound, at least I got out and got to talk to real LIVE people at least a couple of times a week and feel like part of the world. I used to be okay with sitting at home alone, but it's just so great to be around people, get distracted, joke, laugh...But lately, I've had to give up on that. First because of financial issues, I had to cut back to bare minimum appointments, and of those, I ended up asking to be billed for most of the co-pays. I'm in such a hole!
Then, I've actually, without a doubt, been far too sick to do much. I kept trying, and trying to do stuff, because I'm stubborn, pig-headed, and that whole guilt thing, but after a few weeks of being sick...I could almost say it broke me a bit...but on the other hand, there was some of that whole "if you can't beat 'em, join 'em" thing going on.

I just had to come to the realization that, okay, I'm really, really sick right now. Nothing else to do but face it, especially when it's so bad I was starting to avoid even checking my e-mail because being upright was making me feel so ill.

Ah, yes. Dysautonomia. My blood pressure was no lower than it has been since I started on the Beta Blocker, but I could tell it wasn't staying up. I was having headrushes galore, to the point where I was starting to get headaches again, and being upright, sitting at the computer was making me feel just plain ill. It's almost like this anxious feeling, it seems like it's hard to breathe, the muscles in my upper body get completely tensed up, and I just feel sick. And an overwhelming urge to lie down.
It got to the point where I was getting all shaky, like a few weeks back, so I decided I'd better listen and keep lying down, cuz that stuff unnerves me.

PLUS, the UTI was getting so bad, my back was killing me, all the way around actually, and my stomach was swollen enough so it looked like I was pregnant, though I was hardly eating. (Eating made the pain worse, kidney infections seem to screw up one's digestion; at least with me they do...)

I started to get better after a day or so of antibiotics, but then the Dysauntomia flared back up, complete with a resting heartrate of 130. It was so bad I felt out of breath, like I'd been running. I figured, I've gone up to 150 on the eliptical trainer before (back when I was well enough to do that for 20 minutes or so) and there's a hospital less than a mile away, so if it got worse than that, I'd go.
(I think it may have partly been because I ran out of my Beta Blocker the night before, plus, in retrospect, I now see that infections always trigger the Dysautonomia symptoms.)

So all that was fun. I medicated myself any way I could. I had some Celtic Sea Salt, extra pouches of Emergen-C, and vitamins/supplements galore.

I've come (back) to an old conclusion. I need to help my adrenals. Yes, I may have chronic enterovirus infections, but they don't usually make me this sick. And in the past week, I've had different types of infections...so I knew it was my immune system that was having issues. Plus, the Dysauntomia always gets better when I treat my adrenals. I've had a couple of different holistic doctors tell me I was having adrenal troubles, and I KNOW one supplement for them that was key in getting me out of a Dysautonomia flare that was the worse ever (after my last "real" job).

So even if the virus is the cause of everything, treating my obviously exhausted adrenals SHOULD help right? Adrenals regulate your immune system, your digestion, blood sugar, BLOOD PRESSURE, electrolytes, stress response...all of which I've been having trouble with...I am happy to report, that I was pleasantly surprised to find that w/the purchase of some Whey Protein and a box of Emergen-C, I actually have many of the supplements that can help support my adrenals already! (At least for a couple more days...)

So I'm going to work on that, but most of all, just relaxing and accepting that I need to rest, and it's ok to be lazy. Sheesh, that Catholic guilt really does NEVER leave you! Hoping to start some chair yoga tomorrow. Must find my Zen, wherever or however my life is destined to be...

Gratefulness and Acceptance

Well. So today has been a far better day. I stayed up late last night, enjoying chatting with friends online and playing on one of Facebook's fabulous apps. (I am so grateful for the Internet...I'm not sure what I would've done in the years since I got sick, if it hadn't been for the wonderful people I've met online who have given me the love and support that I haven't always been able to get from my offline friends and family. Seriously. (Although some of them are friends and family as well, love you guys!)

So anyways, today I let myself sleep in. The days have cooled off a bit this week, and this morning felt like heaven, I just stretched all over my nice cool sheets and decided to stay in bed as long as I wanted. When I finally did wake up, I felt surprisingly rested and peaceful. I didn't feel fabulous, but it didn't phase me. It was quite surprising, as I went about my business feeling breezy and relaxed. (The only thing I've done differently, is that I took a supplement called Vinpocetine, which I'd originally bought to try and combat the cognitive dysfunction I suffer from; it didn't seem to help, but it came to my attention that it could possibly be helpful with the Orthostatic Hypotension, by increasing blood flow to the brain. Sounds good, right?)

I had a nice comment from one of those friends who I actually know in person, but who has been an endless source of support and kindness and whom I keep in touch with mostly online, and she spoke of "accepting where you are", which reminded me of a quote from Laurie Edwards (author of Living with Chronic Illness in Your 20s and 30s)that said just about the same thing.

It helped when I read it, but this week...well, I just started seeing things as longer term. For example, I've been sick for a month straight now...Haven't been able to accomplish much of anything, and it was driving me insane yesterday. I kept thinking how it seemed like it would never end, and the fear snuck in that things might continue this way...I began to think that in general, the last years, nothing I try works out. Working, going to school, working from home, dating...
I keep fighting, and I have so much anger inside sometimes...
Today though, reading what my friend wrote, and thinking of all that, I remembered a therapy session where my counselor made a metaphor of my coping style with someone trying to dig a hole to China, lol. I wasn't getting anywhere, so maybe it was time to stop working so hard, digging myself a deeper hole, lol.

Lately, I've felt driven to just giving up. I've been feeling like every single day is such a battle, just to get through...even w/o getting anything significant done. I keep thinking, maybe I should just give up and stay in bed all day, not try and do anything at all. Well, yeah, that may be a slight exaggeration, but maybe it wouldn't be such a bad idea?

Stop worrying about time slipping through my hands, not accomplishing anything that I wanted, stop being so angry, stop stressing...maybe that's what I need to do now.

Anyhow, that heavenly state I was in didn't last. I'm in pain again. It's definitely a UTI, and I have no money for an analgesic from the drugstore, or to go to the doctor. But I'm not that stressed, and I am still SO grateful for my morning of peace and relaxation.

Coping, Acceptance, and Dating

I am utterly exhausted. A problem I have, is I have a very active mind. I raised myself with the philosophy of living life to the fullest...nothing makes me happier than a productive day, working, playing, whatever, as long as I feel accomplished. I can't seem to get rid of that notion, it seems to be an integral part of who I am.
I remember a few years back, when I'd only been sick for awhile, having a summer when I was trying a new treatment, had just recently stopped working full-time, and I was so exhausted from the moment I got up...that all I could manage was to move myself to different upright positions around the apartment. From bed, to my futon. Once I was fully awake, to my computer chair, once my knees started hurting, outside to the balcony onto a chair with a leg rest...back to bed, and so on. All the while I was thinking, planning, brainstorming for ways I could manage to work at home successfully. I was confident I could do it, once I had the energy. My last job had allowed me the freedom to wear many hats, and despite having my brain so burnt out I couldn't concentrate or remember enough to be of any use by the time I went on sick leave, it had given me to the confidence to know that I could do anything I set my mind to. So I planned, & plotted. And waited.

These days, I just don't know anymore... I still have ideas...I just can't seem to set them in motion. When I've come close, I've worn myself out...
The problem I face these days is, that I never can tell how I'm going to feel. I beat myself up mentally, telling myself I'm just not trying hard enough, not getting organized enough, not planning well enough, not pushing hard enough. And then I have a day like today. I sat for awhile to allow my body and blood pressure to adjust. Had breakfast. Checked my e-mail and Facebook. I'm still having unexplained pain (I can't figure out if it's a UTI, or the Endometriosis acting up) in my lower abdomen, which gets worse if I have my knees up in a reclined position, so I gave up on the gym, as the only cardio I can do right now is the recumbent bike (treadmill hurts my ridiculously sensitive feet, plus would allow blood to pool in my legs, if I'm already feeling sick (POTS) then that would not seem like a smart idea...eliptical trainer is out too as the up and down motion seems to aggravate that as well).

So I decided to just try putting my feet up against the wall while lying down, to get the blood out of my legs and back up to my upper body/brain. That seemed to help. So I tidied up around my home, mostly just put things away or in the trash, which consisted of picking up something in one room, taking it to the other room, forgetting why I was there or why I'd picked something up, where I wanted to put it, and repeating with different things in different rooms. Then I'd start to feel sick. I'd sit down for a bit, then get up and start doing things again. Then sit. Check my mail, because my mind was too restless to just sit and watch TV, and my lower abdomen hurt lying down in the recliner, and there was nothing in my bedroom to keep my mind occupied...I made progress though.
Finally, I made it to the bane of my existence. Clothes in my room I'd repeatedly put on my bed to try and fold and put away, but that I'd repeatedly ended up not doing for about two weeks. This is where the guilt and self-reproach comes in.
Until, finally, I'm almost done folding, and I find that my back is killing me, I'm out of breath, and I feel like I need to lie down NOW, and I struggle to finish, but I do, and then I lie down. I don't lie down for long, my mind gets bored. But the fatigue is overwhelming. I'm exhausted, and on the one hand I can't believe it, while on the other hand it suddenly makes sense why I hadn't gotten it done. Maybe I wasn't being a wimp? All the while my conscious mind refused to admit that it knew this was why, my subconscious still believes I am a normal person, that it shouldn't be such a big deal. And this is the dilemma I find myself in. This is the battle I find myself exasperatedly fighting day after day.
It occurs to me that something is wrong with me. That after 7 years of dealing with these health issues, I should have adjusted. I shouldn't feel guilty, I shouldn't be questioning myself, or caring what others think of me. But I haven't, at least, not completely, and I don't understand why or how to fix it.
I'm a problem solver, a fixer, but I can't fix this.
I'm stuck. No matter what plan I come up with, it backfires, because the plan must be different every day. Some days I push, and I reap the rewards. The very next day, pushing might prove to be the completely wrong choice.

I drop myself into the computer chair. I can barely hold myself up, but I need a distraction to stop myself from thinking myself into a scream of frustration.
My phone goes off, and I have a message from a guy I've been talking to, dating being part of my latest plan to make my life worth living again. He's wondering where I've been, if I got his message. I try to think of an answer other than being sick, and I end up overwhelmed and I can't bring myself to check his msg online. I don't want to scare him away, it's not time to risk it yet.
But it all shouldn't be this hard, should it?

Student Financial Aid for the Disabled Links

Interesting stuff. Some of this I knew, some of this I didn't.

Like, I didn't know that although schools aren't allowed to count lower than full-time class loads as full for disabled students who may not be able to realistically handle a full load, they are SUPPOSED (if I read right) to make exceptions to the Satisfactory Academic Progress guidelines if the student isn't meeting them due to illness. And here I thought they were just being nice because I wrote a really good appeal letter, lol.

Going to school when you're disabled can be really hard. It takes a lot of juggling, organizing, prioritizing, planning, and just plain staying on top of your game.
Even with help from Student Disabled Services.
Sometimes it still doesn't seem like enough.
One of the keys, as with staying employed if you can manage it, is open communication, especially with your professors.
(I got some good tips about this in Laurie Edwards' book about chronic illness in your 20s and 30s which is on my sidebar under the "Books for Coping" section.)
That was a tough one for me.
I was having a tough time admitting to myself I was disabled, and that it really wasn't my fault. It was one thing writing that appeal for the financial aid, or even going to the Student Disabled Services to ask for front of the line passes for the Financial Aid office. (Ugh, and using them. Talk about dirty looks and defensiveness.
)
But actually telling my professors? It's one thing to have an institution feel sorry for you, but an actual person who you'd planned on having a pretty formal relationship with and whom you perhaps respect and admire?
Since then, I've begun to get over that. Obviously I am disabled, or I wouldn't be here writing this blog.

Plus, I've had enough experiences where I have opened up to people, and had things go a lot better that I could have possibly imagined.
Most people really are good at heart, believe it or not.
And if they see potential they will help you. I haven't been up to going back to school since I realized JUST how much you can do for yourself as far as school is concerned all this, but I feel much better armed to deal with things more efficiently now.

So here are the links:

http://www.finaid.org/otheraid/disabled.phtml

http://www.finaid.org/educators/pj/disability.phtml

*Don't forget to get all you can out of your school's Disabled Student Services! (Different names at different schools, but they all have one.) Explain to them ALL the details of your illness, worst case scenarios, don't leave out Cognitive Dysfunction because it's not widely recognized, especially if it gives you a hard time. Examples of things I got help with or got offered are:

Carbon paper to get copies of people's notes when my hands hurt too much to write or keep up (though I only ever used it when my hand were bandaged up, was just too embarrassed by the whole "but you don't look sick" deal, silly I know but...
Extra test time, a scribe/proctor for taking an exam when I had a pinched nerve in my hand, free training & use of Speech Recognition Software & their Special Resources Lab, better parking (most places you just need a handicapped sticker, & you may not even have to pay for parking)front of the line passes for the infinite line at the Financial Aid office (my back hurts really badly after standing in one place for over 5 minutes, and my blood pressure drops, making me feel pretty ill) a special request to allow me to record lectures, and I think they had an electronic word processor or laptop I could have used to type notes (easier than writing, it's the gripping the pen and writing fast that kills me)but I would've had to return it right after, and the class was in the evening, when the place was closed, so no go.


And above all communicate with your professors. (The Special Services office usually only goes so far.)
Example: At a meeting with my Spanish Professor about my final grade last year, I found out I was just 2 points (due to attendance) short of an A...and when I told her I had some health problems and had proof that I'd been at the ER, she gave me those two points back!)

Getting Better

Well, Things are improving. My heart rhythm has normalized. Only two short episodes yesterday, and one today.

I had an unexpected little windfall, and got to go do a little Christmas shopping for those who are nearest and dearest. That made my weekend. It probably sounds a bit trite, but I really don't even mind that much if I don't get anything, it's the giving I love.

It seems I'm also going to get to do the Christmas Eve thing after all. Should be nice, I miss those peeps. Though I do have a bit of anxiety over the whole inevitable what have you been up to routine. Hmm. Well, nothing much...just being sick, losing my apartment cuz I can't work enough to make a living, getting sicker, having to move to another county with my Dad in a Senior Community, away from my newly constructed life, and then getting even sicker...Yeah, that one's definitely TMI.
The other strategy is to go with as much vaguness as possible, and/or whipping out my silver linings and highlight good sounding half truths and let you assume it's all good cuz that's what you want routine, lol.
Ah, life with chronic invisible illness...

The Fog has been kicking my butt this weekend. I couldn't seem to figure out why, what was different, it had been so much better for awhile there. Was thinking maybe the antiviral. Or maybe cuz I stopped taking some digestive enzymes I ran out of?

Then I realized, I took some Gabapentin for my cramps last week for a couple of days. Nothing else was touching them, even my normally low blood pressure was high (I'd never seen it high!) so I decided to try some Neurontin, cuz I was getting desperate, and VOILA! From one moment to the next, the nagging pain was just GONE. It was such an amazing moment. I'm not sure I even realized how bad it was until it was gone, and then suddenly I could breathe normally again and relax, it was like a weight had been lifted. Now I'm pretty positive it's that whole central nervous system pain sensitization deal, there was no reason for that much pain. My body's just blowing it outta proportion firing away w/the substance P or however that works.
But yeah, Gabapentin does a NUMBER on my brain function. I swear, today it was like I'd lost like 40 IQ points or something. I spent an hour trying to keep straight how many presents I needed for who, and they were all the same thing, only like 5 of them, just different colors! And as for making decisions? AHHHHH!!!!!!!

Oh, that reminds me of something I've been meaning to write about: The prevalence of Endometriosis in women with CFS & FM. I've seen figures as high as 50% of all women with Endo having FM or CFS as well. Interesting, huh? Even more interesting, my doctor, who believes a virus is at the root of CFS, claims that the viruses attack the male and female sex organs...
He asked me if I was sure I had Endo, I told him that's what they told me when they did the surgery to extract it...he went in and read the surgery report to me, and lo and behold...the wording the surgeon used seemed to intentionally avoid positively confirming that what she'd found was definitely Endometriosis! I thought that was pretty trippy.

Here's a related article:

http://news.bio-medicine.org/biology-news-2/US-researchers-find-endometriosis-associated-with-wide-range-of-diseases-6660-1/

Next time, I'll be blogging about my lust for electronic PT Type gadgets...I totally wasted some time, with feet killing me and exhausted, lusting over a vibrating neck heating pad (shoulders/neck KILLING me when I'm on here lately) and massaging slippers...Ah, to dream, perchance...

A Bump in the Road

Warning: This will probably not be a cheery post.

I had a pretty good couple of weeks. My head was clearing, the fog was retreating, I had more and more hours were the invisible barriers that sometimes seem to plague my existence were gone. More energy. A life I could live with seemed right at my fingertips, I could touch it but not quite grab it, and I wanted to do as much as I could to make up for months of business not taken care of. I knew it wouldn't last, but that doesn't make it any easier.
That's the kicker with these illnesses. If I were forever miserable, or lost a limb, I think I could learn to cope with that, maybe even overcome it; it's a constant. But going from good to bad at any given week, day, hour, or moment, that is the challenge. And it messes with your head.

That's what's getting me down right now. I'm a problem solver by nature. But I can't seem to adjust and figure this one out. I so would love to be one of those inspirational chicks who lives well with chronic illness. Sometimes, I wonder if maybe they had it easier, in that they had their illness to contend with, but everything else wasn't falling down around them. If that was it, I think I could finally be happy. If I knew I was safe and ultimately would have people to count on to watch out for me if things got too bad. But I don't feel I have that. I'm still in survival mode. (Granted, one never knows what really goes on in other people's lives, we see what they want us to see much of the time, and I'm by no means trying to diminish their success.)

So days like this, it takes all the strength I have not to go unhinged.
I'm exhausted. I barely slept last night, was woken up by heart palpitations. One of my most feared symptoms, are the cardiac ones, because even though I have an idea what causes it, and I know I'm not alone, most doctors don't. Days like this I spend torn between going to the Emergency Room, and telling myself nothing bad has come of it yet and I should just ignore it. Until, like now, it's definitely time to sleep, but when I lie down there's nothing to drown out the pounding of my heart.

See, I've been to the hospital about 3 times for this type of thing. Once by the time they saw me, it was better (though it came back later, but I wasn't about to go back to wait in the ER again, I was exhausted, and the chairs at county, and sitting for long periods are not Fibro-friendly) another time, I went and they did tons of tests and found nothing much wrong. The one time they seemed alarmed and took me seriously, all they did was temporarily fix it by dripping a saline IV into me for a couple hours and refer me for a test that was done incorrectly and was pretty distressing. (Try hanging upright on a table for 45 minutes w/people staring at you waiting for you to faint, then pumping you w/some drug to try it again, having your heart wig out, next thing you know it seems the doctor is trying to choke you with his hands on your throat digging down into your clavicle so you don't know what will kill you first, your heart and the not being able to breathe, or the doctor who seems to have gone mad but is really performing carotid artery massage to get your heart pumping normally again...)

The idea that I might go and they won't find anything and I'll run into a doctor who still thinks FM & CFS aren't real and that I'm a nut helps keep me home. I'm still bruised from a recent emotional upheaval, and not up to attempting to educate doctors.

I took some medicine, not specifically for that, but meant to address the CFS in general, and it seemed to help, which was very heartening. But it didn't last, and my next dose isn't for hours. I contemplate calling the answering service of the doctor who prescribed it and seems to be able to connect all these symptoms, to get his opinion, but I'd feel bad waking him up, if they even do that...

I'm so exhausted, but if I lie down, it's harder to ignore and it's hard to keep it from freaking me out. It seems different, too. Usually my BP is really low, and my pulse is racing. This time it's just pounding and occasionally the rhythm feels off.
My soul just feels so weary of all of this. Tired of fighting one thing after another. One day to breathe, another to be upright, another the fatigue, or pain, my brain feeling like a pretzel, or just attempting to overcome all the problems that come with not being able to hold a regular job, and having a condition the SSA is extremely skeptical of.
And then come those blessed good days that I'm so grateful for and make me forget the bad ones; until they're over, and the change isn't always gradual, sometimes it just hits you like a pile of bricks and it's like,
"Wait! What happened?"

All I want is to be able to make a living, be reliable, feel like a responsible, dignified, halfway normal adult again, have confidence that I can take care of myself, and move forward with my life and be happy. It really doesn't take a lot to make me happy...I reach out and grab happiness when I can find it, usually, and hold on tight.

I've been considering, and a dear friend today reminded me that there is no shame in taking anti-depressants. But I've been fighting having to add another pill to my array of meds and supplements, especially one that if I run out of will leave me with little electric zap reminders to the brain, tingly lips, and slight episodes of vertigo and the sensation of being off somehow, in its wake. I haven't even been that depressed lately, it's just the emotional rollercoaster...I'm a pretty emotionally sensitive person, and I've been through hell these last couple of years...at times, it could be an asset to feel things so deeply, but right now it seems like just another thing exhausting me, and I wouldn't mind getting off that ride for a bit.

Alrighty folks, my heart seems to have settled down for the moment. Maybe I can sneak off and go to sleep before it realizes I know...Shhhh... ;)

Oh, and any tips from anyone with experience with ,these kinds of symptoms would be greatly appreciated. I know you must be out there, somewhere...

New Issue of Fibromyalgia Aware Magazine out

This really is an impressive publication. I had never gotten a chance to have it until I got some cheap at a support group this year, but now that I've read it, and see how see the quality of the research and articles in it, and how well it addresses the reality of living with FM, I will definitely be saving the few buck for it. It's my understanding they sell them at CVS stores. Check it out this is some info on the latest issue:



from the FMAware.org Site:
The National Fibromyalgia Association has released the newest issue of Fibromyalgia AWARE, the first and only consumer magazine dedicated to the disorder. The issue (Winter 2008 Vol. 18) includes a special section on fibro-friendly exercises.


Featured stories in Vol. 18 include:

* Effective Skills to Relax the Body
* Guidelines for Stretching
* Gentle Body Movements
* Growth Hormones & FM
* Lyme Disease and FM
* Finding a Support Group that’s Right for You
* Research Explores Causes of FM
* Dealing with FM-Related Suicide Thoughts
* Choosing the Right Shoe
* And more

See full text here: http://www.fmaware.org/site/News2?page=NewsArticle&id=8073

When Someone You Know Has Fibromyalgia

Some Friendly Advice when someone you know has fibromyalgia
----------------------------------------

----------------------------------------
by Lisa Lorden, M.S.

"The hardest thing is not to be able to work magic for a friend." - Maya Patel

Chronic illness presents a variety of challenges to relationships at a time when they are needed the most. Some people with Fibromyalgia (FM) feel an ongoing need to talk about their illness and its impact on their lives. At the same time, many people become more distant or reclusive; this is especially true during periods of severe symptoms, because being around others requires energy that is in such short supply. The mere act of having to pay attention, think and respond to someone causes major stress, headaches and other involuntary reactions for them. It might seem as though this person is pushing you away, when in fact, they really are not able to even carry on a conversation during those times. These alternating needs for distance and closeness can be difficult and confusing.

In addition, a person with FM has experienced enormous losses due to illness. Fibromyalgia often affects every aspect of a person's life, causing a decrease in self-esteem. Once strong and self-confident people may feel inadequate and unlovable due to lack of productivity, inability to work or engage in other activities, discouragement about recovery, financial difficulties caused by the illness, coping with debilitating pain and fatigue on a long-term basis, and so much more. Yet the FM patient is not the only one who is suffering. Watching a friend or loved one struggle with an incurable and poorly understood illness often makes people feel powerless and discouraged. But your friendship does matter, now more than ever; and there are many things you can do:

Educate yourself about Fibromyalgia. Read articles about personal experiences and coping. But don't point out how well someone else may be doing with the illness, and don't try to diagnose or even advise them about treatment.

Be patient and caring.

Understand their need for ongoing rest, and solitude at times.

Acknowledge the seriousness of the illness. Validate feelings of loss, sadness, anger, and hope.

Don't expect them to be able to work or even do basic household chores on a daily basis.

Give them privacy and as much independence as they need.

Offer to help in practical and specific ways; such as grocery shopping, running errands, or household chores.

Understand that looking good or trying to be positive doesn't necessarily mean your loved one feels good!

Make plans flexible to accommodate unpredictable symptoms and fluctuating energy levels. Be understanding when they must be changed or canceled at the last minute.

Realize that your loved one may seem "okay" while you're together but then pay an enormous price later for the over-exertion.

Ask questions about things you don't understand.

Enjoy low-energy activities together.

Express gratitude for what the person with FM still gives to you, even though they may not be able to do some of the things they could before.

Reassure them about how important they are in your life.

When you are not sure about how to be helpful, just ask. But don't pressure them.

Be aware of unpredictable mood swings. Try not to take reactions personally that might seem illogical or over-emotional.

Listen while your friend expresses needs, emotions, and thoughts. But don't try to "fix" them, or control their lives for them.

Express your admiration for your loved one's strength in coping with illness so far.

Learn to be perceptive. You don't have to be a mind-reader, but you can watch for signs of how your loved one is feeling, or when they may need extra help and support, or when they may just need to be alone.

Most important to remember is that just showing that you care means more than you could imagine.
-------------------

References:
"For Those Who Care," CFIDS Association brochure.
"Running On Empty," by Katrina Berne, Ph.D.
"Sick and Tired of Feeling Sick and Tired," by Paul Donoghue & Mary Siegel.