Category: Fibromyalgia

A Snails Pace

Published on by Mary Gelpi20 Comments

I’ve been as productive as a sloth the last few days. Not sure why, but my pain has been worse than normal and energy has been low. Way low. Like non-existent low. Thus I’ve turned into a slow-moving snail, crawling from room to room wrapped in a blanket and moaning a lot. I’m sure I’m a real treat to be around. It may be recovery from the Holidays or the weather or the moon or it may just be that, hey, this illness doesn’t need a reason for you to feel bad. Even when you’re doing everything right, you’ll have poopy fart days. Luckily, I am jobless, so I let those days come and pass and rest until recovered. I still wonder what it would be like if I had my old job, and had to work an 8 hour day through feeling this way. I remember those days all too well. Then I get really nauseous at the thought and watch another episode of Frasier.

(For those of you out there still working with this illness, hang tough. I know what those days feel like. We’ll get there)

On days like yesterday, I have no desire to see or talk to anyone. My phone rings and I just can’t bring myself to answer. The feeling is rough because I am a social animal after all and love my friends and family a lot. But there are some things you just can’t fake. And when I’m feeling that way, there’s no faking enthusiasm. I’ve tried it and failed enough times that now I just don’t answer. The person on the other end would have a better conversation with Monty than me. Maybe I’ll pass the phone to him next time. I realize that this makes me, at times, a shitty friend, sister, grand-daughter, aunt. But I know how the conversation would go.

Hello? Hey Mary!! Hey. How are you!? Awesome. You don’t sound awesome. You got me. What’s wrong? Feel like death.What’s bothering you? Just really tired? Yeah, just really tired. Did you try those South African JuJu Beans I sent you? They’re supposed to be good for energy! No, too tired to stir the mixture. Bye.

South African JuJu Beans. P.S. I made this up.

See? Worthless conversation. And explaining my symptoms to people over the phone doesn’t help either, not to mention it makes me the Debbie Downer of the Century. I’d rather just hibernate until I don’t feel so lifeless. Whoever’s still around when I emerge from the cave are the people I call friends. Anyway yesterday was the National Championship and I was supposed to go to a party to watch it but since I was half dead I didn’t show up. Coincidentally the Tigers didn’t show up either. (BURN!) I watched it in PJ’s on the couch with Monty while icing my legs because they’ve been cramped for days. Then I scoured Facebook and laughed at the angriest statuses I’ve ever seen. “Completely Embarrassed.” “Time to FIRE LES MILES!” “Worst LSU game EVER!!!” “If we run the option again I’m going to MURDER MYSELF!!!” I don’t know why angry statuses humor me. They just do. Don’t hurt me.

Anyway, I’ve been receiving a lot of emails lately from people who are seeking help in getting diagnosed or who think they may be mis-diagnosed. I wish I were more an expert on CFIDS so I could offer real help but in the end I’m just a sick kid with two anatomy classes under my belt. (My mom on the other hand has a medical background and has suffered with the illness for over 20 years. I’ll get to that later) The most important thing I can tell you is there seems to be a key difference between Chronic Fatigue Syndrome and Fibromyalgia regarding exercise. It’s complicated since there is not one diagnostic test for either, but a main difference is that exercise seems to be helpful/relieve pain for many people with fibromyalgia. On the other hand, exercise can be extremely detrimental to those with CFS. An easy way to tell is just to pay attention to how you feel the day after you exercise. Having sore muscles is a normal reaction. If you are completely crashed, as in, feel like you’ve been hit by a truck and have trouble getting out of bed, you most likely have CFS, or the component which causes “Post-Exertional Malaise.” Trying to push through this ‘crash’ will only set you back and make you worse. It basically comes down to this. Do you feel like this the day after exercise?

Then Stop.

Or do you feel like this after you exercise?

Then continue!

There is so much misinformation out there that I truly am surprised I was effectively diagnosed and treated. But this took years and didn’t happen until my mom found a specialist: Dr. Nancy Klimas. There’s also a lot of people trying to sell things that won’t help you. So be wise. Currently, there is no cure for CFIDS/Fibro. So be wary if someone offers you the cure-all. I’m going to attach some helpful links for those interested in reading further on the illnesses for now. BUT, I am ALSO going to collaborate with my mom on one of my next posts and try to clear the air about some things regarding ME/CFIDS/ and Fibro. I am also going to try to get my doctor in on the conversation because I know she holds a lot of vital information that is scarce and hard to find but would help a lot of people out. So stay tuned.

I’ve also received some emails that read “Hey, I’m tired all the time. Do you think I have CFS? How do I get diagnosed?” This question is kind of like the equivalent of asking “Hey, I gained some weight in my midsection. Do you think I’m pregnant?” For one thing, calling it ‘tired’ is like calling the atomic bomb a fire cracker. It’s hard to give it a word or name people can understand, but tired definitely falls short. Think more along the lines of bones-crushing fatigue. Anyway, while feeling like you could sleep for days and being extremely exhausted are key symptoms, they are far from the only symptoms. CFIDS is an autoimmune disorder, meaning every autonomic process in your body is basically haywire. Thus, you feel like death. And chances are you look like it too! Anyway, the links are below. But I promise to devote space in the future dedicated to debunking some myths and trying to spread accurate awareness about these illnesses. In the meantime, guess what? I’m tired.

Health, Happiness, and Hang In There.

http://phoenixrising.me/

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

http://www.pandoranet.info/

AboutMECFS.org

Guess What? It Get’s Better.

Published on by Mary Gelpi38 Comments

It was on this day one year ago that everything changed. And the change began with everything falling apart. One by one, the “solids” in my life unraveled like lazy yarn. It all started on New Years Eve, 2010.

My body was in what I like to call “Fail Mode” and I was at my parents house, feeling isolated and crappy. I was convincing myself that by that night I would feel well enough to leave, join the world in the celebration of a New Year and maybe even drink some champagne. Hah. Did. Not. Happen. By 5 pm I was sending out a very familiar text: “Sorry dude, I feel terrible. Won’t be able to make it…” If I had a nickel for every time I’ve said that phrase, well, you know.

Happy New Year! Oh wait. My life sucks.

That night I finally had a bit of a mental breakdown. My parents stayed up until midnight. At 12 they kissed and I looked down and saw Monty, so I kissed him. My new years kiss was with my dog. GREAT. I kept reminding myself that it was only a night, it wouldn’t last. By tomorrow, the party I was missing would be over, and so would all of this. For some reason, my mom couldn’t sleep that night and neither could I. I walked out into the living room around 2 am, saw her watching TV, and lost my shit. Through the tears I finally admitted to her how worried I was about my life. I hardly had a social life anymore. I was barely making it to work every day. Traveling was too hard on me so I had basically stopped. It felt like all I did was work and sleep. I had nothing left for anything else. Nothing left for the ‘good parts.’ Nights and weekends were often spent in bed, catching up. I felt out of control. The illness was in control, and that scared me. My mom counseled me through it the way she would continue to do for the next year. She reminded me I was young, that this moment wasn’t forever, and there was still a lot of possibility if I could only hang on. She was right. But hanging on is the hardest thing to do. At times this year it felt like I was sinking, and couldn’t see the bottom or the top.

I felt like the "Help! I've Fallen and I Can't Get Up" lady

New Years Day I was no better. Everything hurt. I was heavy, dizzy, and nauseous. I would be stationary but feel carsick. Walking became hard. Too hard. I continued to get worse until Monday when I woke up and felt too fatigued to walk to the bathroom. That’s when I called the parents, they came to pick me up, and the gradual “move back in with the parents” began. Each day it became painfully more clear that I wouldn’t be able to live by myself anymore. It didn’t bother me so much at that point. I was too sick for pride.

I remember when my sister came to help out at the end of January and I told her I wished there was a fast forward button. “I just want it to be over.” She sat with me, said she wished for one too, but told me the truth. “It’s gonna be hard Mare, but we’ll get through it.” And now I look at the date and see, I made it. The crappiest year of my life, is about to be over. Hells yeah! Sometimes I wish I could bundle 2011 up in a big bowl of lint and burn it to nothing. The truth of the matter is it’s all theoretical anyway. January 1st is just the day after December 31st. It doesn’t mean anything, really. But our perspective changes. We make new plans, pledges, and goals in hopes for not a new life, but a better life. Even though it is just another year, and there’s a possibility it could be even worse than 2011, I am a romantic for the capability of change. And a new year holds great possibilities. It’s like buying a fresh new notebook. You don’t know what will fill the pages, but the prospect on the blankness excites you.

The truth is it’s about to be 2012 and my struggle is going to continue. I’m not all better. I am still jobless, still living with my parents, and struggling to maintain relationships. The challenges I faced in 2011 are still going to be there. My hope is though, that I’ve learned and suffered enough to manage what’s in front of me. Like my mom says, “Just do today.” I hope that I continue to grow, that I cherish what I have and not long for what I don’t. I’m looking at 2012 as the year of possibility. My only job is to stay open to it. And I think I can handle that. I think!

One of the best moments in 2011 occurred in a bathroom stall on my birthday. My friend Kaitlin and I walked to an ice cream shop on Magazine street. In the bathroom stall there were all kinds of scribblings and drawings on the wall, but my eyes went straight to a phrase written in green. Someone wrote this: “It gets better. I promise.” I immediately sensed my dad. Of course my dad didn’t write it. It was probably some stoner kid feeling wildly optimistic. But I think it was from him that I saw it. I felt it. And I felt better. I walked out holding on to the energy of the phrase. Because that’s what I felt from it; energy. It’s like the energy in saying “I’m going to die one day” or “I love you” for the first time. It’s wild. But it’s real.

Anyway, I wanted to share the dark times of this year but also the moments of relief. Because it wasn’t only grand gestures, it was also the very small things this year that carried me. Things as small as writing on a bathroom wall. In the moments where I was hanging on by a thread, I would grab hold of anything to get me out. Sometimes the only thing to concentrate on was my breath. So I’d start there. The most important thing to remember is that every moment passes. Today will be tomorrow soon. Tomorrow will be next month, and alas, the year will end. This year began with everything falling apart. The new year begins with everything reassembling itself. That’s the thing about things falling apart; they always get put back together, stronger than they once were.

Health, Happiness, and It Does Gets Better. I promise.

Happy New Year!

Thanks, I’ll try that.

Published on by Mary Gelpi68 Comments

A story.

After working a couple of months full-time at the Art Gallery, I started calling in sick more and more frequently. I dreaded making the call. I dreaded hearing my bosses voice after I would have to, yet again, say I’d be late or not in at all. I was really lucky to have the boss I did because for all the times I was late and absent, he remained pretty understanding and encouraging. But he was only one guy. I worked in a gallery with 40 other people.

There are some inevitable things you’ll confront with this illness. And from the emails I’ve been reading recently, it isn’t just this illness. It’s all kinds of autoimmune diseases and beyond. The first inevitable thing you’ll confront: people who don’t believe you. I always wondered why that was. Why would I make up the stupidest sounding disease I have ever heard of? Chronic Fatigue Syndrome? Why don’t they just call it Tired-Lazy-Person-Disease. Anyway, I know people call-in sick when in actuality, they aren’t. That’s occurred since the 40 hour work week began, I imagine. The last 6 months of my job were more me faking healthy than sick. I was sick everyday. It was just a matter of, was I not too sick to be able to get through the 8 hours. Having a boss who believed me was a blessing. Unfortunately, the rest of the office…wasn’t  so sure. If I really think about it, I can’t totally blame them for their skepticism. Some young newby walks in the office with optimism in her eyes and excitement about having her own office supplies..then slowly…surely…shows up less…and less…and less. I knew the things they’d say when I called in. I heard what they would call me when I wasn’t there. I walked into enough rooms with that sense hanging in the air…that tangible feeling that you were the topic of discussion, and it wasn’t about how great you are! Some of them just looked at me with plain anger, which was hard for me to swallow. But I knew what they thought at the root of it: that it wasn’t fair. I got to miss all this work while they got their asses to the gallery everyday and on time. Everyone is tired, that’s no excuse. If they only knew how unfair it really was. I would’ve gladly traded with any of them. I always said that, but no one believed me.

The next thing you’re going to confront: advice. Sweet, unsolicited, unknowledgeable advice. And here’s how it will go. Have you tried acupuncture? Have you tried rolfing? You need to try acupressure. You need to re-set your bodies internal clock. You should do yoga, at least 3 times a week. You should work out, hard, every day. You need to drink more water! Have you ever considered going gluten-free? Dude, it’s probably the mold. You should avoid dairy, that’s what my mom did and now she’s all better! You’re eating too much salt. You just need to push through it. Massage therapy! Chiropractor! Holistic medicine! You should stop taking every pill you’re taking, cold turkey. I’d bet you’d feel better. Go running! Go to a psychiatrist! Go to India! I heard this thing about acai berries… Have you tried talking to God about it? You may dabble in Buddhism..that did a lot for me. I’m sure it’s nothing a little exercise couldn’t cure! If you just spent 2 weeks with me, I’d have you fixed in no time. Stop drinking coffee! Stop eating meat! Stop eating and drinking! Don’t sleep so much! Have you ever gotten your cavities filled? Ah, it’s your fillings then, they’re leaking toxic chemicals into your blood. You should try taking magnesium, you’ll feel better! I have something called Tylenol, will that help? 

And those are just a few..I could go on. Also, those are all real pieces of actual advice I’ve been given. And I’ve become pretty well-versed at receiving advice that I don’t want. And the response is this: Thanks, I’ll try that! The reason I say that is because, for me, I was tired of spending hours explaining to people that I had already tried pretty much everything, seen 10 doctors, and tried diet changes. People couldn’t understand that exercise made me worse and rest was actually good for me. By the end, you’re just tired. Tired of talking about it, tired of fighting people on it, tired of defending yourself, of convincing people you’re not crazy, you’re not lazy, and you’re not a basket case. By the end I didn’t care. Truthfully people just want to help you, and so they offer advice. And that’s fine. But, would you tell someone with aids to just drink more water? Or someone with cancer to just take more vitamins? Doubtful. Not unheard of, but doubtful. And that is why, it’s just so much easier and less exhausting to say: Thanks, I’ll try that. Smile and nod. Thank them for the advice, and keep moving. They’ll get it or they won’t. But whether they do or not is not what will get you better in the end. It sucks not to be believed. It sucks to be misunderstood. But when your energy level is already such a commodity, it becomes a matter of livelihood. I didn’t have it in me to fight the world anymore, so I let them say what they say and do what they do.

There’s a quote I’ve liked since I was a kid that I would play in my head when the “noise” of the world became too loud. It’s something like this:

No one knows what I am. Only I know what I am. If I were a giraffe, and someone called me a monkey, I’d think, No, actually, I’m a giraffe. “

So it’s not the deepest of quotes, but I enjoy the simplicity of it. And that’s how I started to have to see myself. I needed to stop proving what I was and what I wasn’t, and just be exactly what I was: a sarcastic sick kid trying to get through every day. And many times-failing! Everyone you meet has a story, has their own battle. And we’re all quick to think we know who everyone is, and put them in a box with a nice clean label on it. But inside we all know, it goes much further than that.

I’m sharing this story because I’ve received quite a few emails and responses about the loneliness in being sick, not being believed, and the difficulty in explaining their respective illnesses to people they care about. I am just one person and this is only one experience, but I think this is a big lesson. Allow yourself to be sick. Accept what is. Don’t run from it anymore. Don’t dwell on it either. Just acknowledge what is, and see where the clarity takes you. You’ll be surprised. My final thought is this. After a particularly hard day, a few days after I had lost my job and realized I would have to give up my apartment, I was angry. I was really sad but also really angry. I kept thinking about that word Fair, and how this Wasn’t! I don’t know where they came from, but when I laid down to sleep that night, these words came over me: You were trusted with this illness. And that, among all the health advice I’d ever received, made me feel better.

Health, Happiness, and Thanks! I’ll try that.

But chances are..I already have. :)

GUILTY

Published on by Mary Gelpi1 Comment

There is a phrase called “Paying the price” that someone with CFIDS/Fibro/Lyme Disease/WhateverthehellelseIhave/ is very familiar with. Paying the price comes from illness crimes. It’s very easy to commit crimes against the illness. The most common crime I commit is overdoing it, which results in paying the price. Paying the price means you don’t get to do much of anything for a couple of days because your body hates you and you’re going to spend ample time on a couch or a bed with disturbed sleep and in my case watching a lot of Frasier because let’s get real, Frasier rocks, and promising you’ll never do it again. NEVER! But of course, you do. Because this is life, and you want to have fun. And apparently you haven’t paid a high enough price. APPARENTLY.

Anyway I overdid it this weekend, thus I am paying the price. First of all I traveled. FELONY. I also went to a wedding. MISDEMEANOR. I drank at the wedding. MURDER. Then I went to a Saints Game. DEATH PENALTY. Was it fun? Duh. It was way fun. But now I am couch ridden and very behind in my studies. Tisk tisk. Luckily Frasier is on Play It Now on Netflix so I have plenty of material to keep my sick little mind occupied. I tried going to class and comprehending anything my teacher said but I could only focus on the way she says calcium and phosphate. “Calshium Phoshphate.” She’s from India and her pronunciations keep me on my toes. I left class really foggy headed and dizzy so I’ve been drinking fluids and staying horizontal to try to get back on track. I’m going home this weekend for some TLC and to rest. I am a sucker for peer pressure, and the only thing I get peer pressured into at my parents house is watching Bill O’Reilly, so I should be able to handle that.

I don’t feel like I have a lot to say. So I guess I’ll go now. My anxiety is a little better so that’s good news. Maybe I am just too fatigued to notice it lately. Anyway, it’s 4:30 pm, I’m going to get ready for bed.

Health Happiness and Felony’s

Sweet Dreams

Published on by Mary GelpiLeave a comment

I don’t know what the eff is going on lately but I have this newfound anxiety which is pretty unpleasant. I’ve never had anxiety before so I’m still getting used to this new feeling. If I can sum the feeling up in symbols it’s like this: !!!!!!!!!???!?!?!??!?!?!?!?!!!!!!!!…..!!!!!!!!  …?….!!!!!!!!!!!!!. It’s kind of exciting this “anxiety”. Since I’ve never had it before it’s something new I can scratch off the list. Score! It’s like restlessness meets unease meets subtle guilt and fear you’ve done something wrong. It’s been about three weeks of this and still going strong.

The other fun part of it is my high anxiety dreams. I’ve always had stressful dreams that end up with me all sweaty and yelling something like “Doooon’t Killll Montyyy!!” My mom, who was a student of Jungian psychology told me to start writing my dreams down, and then I would get to the root of the issue. I guess half of the issue is not knowing what the actual issue is. I bet I sound like such a typical girl right now. So my mom told me to write the dreams and she’d help me analyze them. And I’m all “But I hate rehashing my dreams! They’re terrible!” And she’s all “You’ll never solve it that way Mary! Don’t be a quitter!” So anyway, I started writing them down.  And no, this is not totally unsubstantiated psycho babel. Think about it. Your conscious mind can’t possibly access and work through all of your current life situations, (it’s too busy texting and driving and facebooking) so when you sleep you access the greatest window to the unconscious. Jung said the mind worked in symbols, and so analyzing dreams is just a matter of breaking those symbols down. Mom if I’m getting this all wrong please correct it. You’re the smart one.

Anyway this is last nights dream:

I tell my mom that I want to go to Colorado for Thanksgiving but she telsl me we’re going to stay here and spend it with Jess (one of my best friends) and her family. I am kind of sad about this because I’d rather spend it with my Colorado family but I agree…the next thing I know me and Jess are floating on tubes down a river, a muddy Southern Louisiana river (the ones you go tubing on near our house) We’re tubing down the river and Monty is swimming at our side. Pretty soon we are going surprisingly fast down the river and just letting the current take us. Somehow I end up stuck in some sticks and rocks and I am trying to get loose. Jess also got stuck but she got out first. When I finally get out of the sticks I see a note from Jess saying she went on but she is really excited for thanksgiving and she’ll see me soon. I think that’s fine until I realize I don’t know which direction to go. The river doesn’t seem to go obviously in one direction or another. The next thing I realize Monty is missing. (this is a common theme in many of my dreams) I start to panic a bit because night is falling and monty is missing and I don’t know which direction to go. (see why I have anxiety!?!?)  As I am floating down the river I’m calling out for Monty..I start to float into a herd of HUGE GEESE but nothing happens. (as in they don’t kill me like I thought they might) Finally I see a sheriff standing on a bridge and I’m calling out to him loudly to save me. There is traffic and for a while he doesn’t hear me but finally he does. He anchors me up from the water and I tell him I have a dog that we have to find but the whole thing feels grim and it’s pretty certain we’re not going to find Monty.

THE END.
So much fun right? Actually the unexplainably large swarm of geese was fun. So here’s what my mom responded with:

“Awesome dream…lots to see but I’m crazy busy right now getting ready for company so we’ll have to process it later.  In the meantime write down who Jess represents to you and what Monty represents to you and we’ll go from there  love you, mom”

I understand, company can be a headache. That’s all for now. Health Happiness and Sweet Dreams.

Pay Phones

Published on by Mary Gelpi1 Comment

I still feel shitty today blah blah blah. My legs are all cramped up blah blah blah. The good news is it’s Saturday and all you have to do on Saturday in the Fall is watch College Football and as previously stated, I’m awesome at doing that. LSU vs. Florida, 2:00, woo woo. It really helps that the weather is so sexy right now. It’s like if you’re going to have a migraine, it might as well be in sunny 70 degree weather.

Yesterday my friend Jared and I went for a walk around mid city New Orleans and it was nice. (Again, weather.) And Monty was eager to play. My legs hurt and my headache was in and out but after two large large cups of iced coffee the headache went away and I got a little energy. By this point it was 2:30. I was finally awake. I don’t think I am meant to exist before early afternoon. I’m just not a great person in the mornings. I feel I do better in late afternoons and best at night. I like when the time changes and it gets dark early. It’s like my nighttime greatness doubles!

Can Phone.
.

Anyway on our walk we passed this payphone. I love seeing payphones these days because they’re like this ancientartifact that really aren’t from that long ago but anytime I pass one it never works or the phone has been ripped out. But if you’re really lucky you’ll get a dial tone. It’s like a technological four-leaf clover! So we pass the same one I always pass on the walk to the coffee shop and notice some mardi gras beads on the top. (You’re never ever far in Nola from some carelessly thrown beads.) And a diet coke can was where the phone part used to be. So my inventive friend attached the diet coke can to the mardi gras beads and made a can phone! 25 cents not neccesary! I just know some drunk person is going to come across it one night and totally have a conversation on that can phone and something about that makes me happy.

Then we took Monty to Bayou St. John where he swam after sticks and hopefully didn’t pick up anything poisonous in that very very very very dirty water. He was just having so much fun though, it might be worth the Bayou Flu. I bathed him when we got home at least so my bed wouldn’t smell like the bayou. Yes, he sleeps in the bed with me. Lay off. He’s a good spooner!

So a friend shared this article with me which sums up pretty well what a chronic illness can be like. She nails it on the head about time management. Everything becomes so calculated when you’re sick. It can be shitty, but if you start to look at it as the new way in which to live your life and not an obstacle to see as getting in your way, it makes it a little easier. Anyway her Spoon Theory makes perfect sense and it’s good to know I’m not the only dealing with fibo-myalgia-lyme-chronic-shit whatever. The world is full of sickleys! Health and happiness and can phones.