For the Ladies

22 01 2014

Sisters, let’s get real. Menstruation with fibromyalgia fully sucks. You are not crazy & you are not dying. It will go away, but for a couple of days, woe betide anyone who comes to you with requests for your time but no cake.

Let’s dissect some of The Horror so you don’t feel like there is something terribly wrong with you. Here’s are 10 things I wish someone had told me:

1. Cramps can best be described as “times eleventybillion”.

2. You will go into flare.

3. As fibro has a vascular component, migraines are likely. Prepare accordingly: have coffee/tea/RockStar on hand.

4. Symptoms other people associate with food poisoning are just your first day.

5. Everything will make you cry, including weird stuff like a friend not returning a text within 15 minutes & tea taking more than 2 minutes to heat up in the microwave.

6. You will want sugar & other carbs. These will actually make your stomach flu-like symptoms worse, & may even increase pain. You must eat protein. However, if a gluten free Joe Joe will prevent a trial for first degree murder, go ahead & eat that bad boy. After your protein.

7. You may actually feel like you’re dying as your body seems to be shutting down. You probably aren’t. If you have shortness of breath or rapid heart beat, go see somebody, but the pain & “robot with a low battery” sensation is most likely your body rerouting resources.

8. You will not be able to string together a coherent spoken sentence & will probably be sent home from work, if you were even able to get out of bed or operate a vehicle better than a sorority girl after someone’s called out “JAEGER SHOTS!”

9. Everyone is going to seem like a jerk. Today is not the day to react to social media posts, perceived real life slights, or awkward silences. It’s probably not what you think.

10. YOU WILL FEEL BETTER TOMORROW. In a couple more days, you will feel about as normal as a fibrogal can. Don’t give into despair; this misery is not forever.

You may have other symptoms & tips I’ve not listed. If so, feel free to comment so we can comfort as many women folk as possible.





Flu or cold…who the hell knows?

7 01 2014

A cold is respiratory symptoms. A flu is respiratory symptoms with body aches & fever. When you have fibromyalgia, who the hell can tell the difference?

Your treatment protocol should be the same for any respiratory ailment plus flare because yes, you will go into flare. This means taking care of yourself, staying the hell away from people, imbibing gallons of fluids, OTC meds if you’re so inclined (they do nearly nothing for me), & heading to the doctor if it worsens rather than gets marginally better after 3 days, if there’s a fever, or if something feels wrong.

I don’t claim anything I do works for everyone, but I swear by ColdEeze & EmergenC at the first sign of symptoms. Even if they don’t stop it cold, they shorten it, & I personally prefer to suffer less. I also don’t feel like eating or have the energy to do anything, so drinking chicken broth heated in a mug in the microwave is a good alternative to actual cooking & keeps the electrolytes up when I’ve been saturating with tea.

Ok, I’m going back to sleep.





The Care and Handling of Your Achy Crabby Friend

17 11 2013

Congratulations on your purchase of a friend with fibromyalgia! With gentle care & small considerations, you will have a friend for a lifetime. Please take a moment to read these care instructions, & refer to them any time your friend appears to be fraying or wearing out.

1. Friend With Fibromyalgia can provide a lifetime of laughs and insight, listening & loving. It cannot necessarily do all these things on a given day or week, however. You may go an entire month without being able to get your Friend With Fibromyalgia to work properly. Please do not return it to the manufacturer; ask it if it needs anything or leave it alone. It will eventually return to factory specs.

2. You can help prevent Friend With Fibromyalgia from breaking down. When enjoying an outing with it, do not hijack it for extra quick trips or keep it sitting in one spot for longer than is comfortable. “Can we stop at this divine little cafe before we go home?” is a perfectly valid question, but remember that Friend With Fibromyalgia may have a limited number of times it can get in & out of a car before it starts to malfunction. “Let’s stay for another movie” or “Come on! Let’s dance!” might also be answered with a gentle “No”, lest it go into flare. It does not matter if Friend With Fibromyalgia could dance or go into 87 boutique shops last week. The weather has changed/the work week was rough/God only knows happened & now it cannot participate. Let it go home.

3. If Friend With Fibromyalgia is in flare, or is going into flare, even texts are difficult. Your Friend wants to help you & loves you very much, but your Friend also hopes they will die very soon to be rid of the pain & fatigue, so unless something very serious is happening (death, dismemberment), please do not ask Friend for assistance. Have you ever had the flu while several bones in your body are broken? Would you want to hear about work woes or significant other gripes while dealing with that pain? Your Friend With Fibromyalgia might be too polite to say, but it is not capable of dealing with First World Problems today. If it does not respond, it is simply not functioning today. It does not hate you; it hates being alive.

4. You can’t fix that. Don’t worry about it.

5. Sometimes Friend With Fibromyalgia will say or text garbled messages such as “Zgdbr83!!” or “I think I’m an hour outside of town but I don’t know where I am I probably won’t make it.” The first instance might be fine motor stuff; the second is cognitive fog. In the first case just let it go; in the second case ask Friend With Fibromyalgia to please text you when they get home to let you know they’re ok. Do not be alarmed if they forget that, too. They get lost a lot.

6. If you can drive Friend With Fibromyalgia, especially long-distance or multiple-stop trips, that’s a very good idea. It will be able to do more with you. Let it get out & stretch if it needs to. You can tell because it will start twitching or doing weird things with its arms or neck.

7. No matter how adorable & supple your Friend With Fibromyalgia appears, it’s not a bad idea to treat it like your 87 year old grandmother, even if it’s a child. If your 87 year old grandmother could sometimes walk 3 miles on the beach or dance for two hours, wouldn’t that be awesome? Think of your Friend that way.

8. Your Friend can’t eat fast food. Consider meals with your Friend an opportunity to explore freshly prepared cuisine with no mystery ingredients. Friends With Fibromyalgia cannot be fueled by anything with more than 3 syllables American & 2 syllables English*

*Say “strawberries” to yourself first with an American accent, then an English one. A real one, not Dick Van Dyke. There you go.

9. Your Friend With Fibromyalgia does enjoy hugs. It does not enjoy being compressed enthusiastically, shaken, or clapped/pounded on the back. That’s why it doesn’t go to sports bars despite really enjoying screaming about what a fricken piece of crap loser Eli is. Suck on the failure, Eli! SUCK IT!

10. Go easy on the commercial cologne. Your Friend has a highly tuned nervous system & can smell you from 7 blocks away even if you’ve just had a 5 minute shower with unscented soap. A spritz of your cologne is delightful. A cloud will cause Friend With Fibromyalgia’s head to explode.

If you do not believe you can comply with the care & handling of Friend With Fibromyalgia, it’s ok to just enjoy their online presence & Like or Favourite their many amusing comments. Your Friend doesn’t want to be a pain in your ass any more than you want to deal with someone who is over sensitive in the most literal, physical sense.

Bonus care tip: Friends in Flare don’t want to be pitied. They do want to laugh or be distracted from their pain. Absurd is best; it’s an absurd disease.





Pretending to Be Normal

18 09 2013

Someone I’m quite close to asked me a while back “How are you doing?” & rather than give my tired old lie “Ok,” I said “I’m in a lot of pain today. Weak, too.” And he replied, “You’re always in pain.”

In my head I immediately responded “Yes, as I have a chronic pain condition. Some days are worse than others. Today is particularly bad, but I am never not in pain. That is an accurate assessment.”

But what actually came out of my mouth was “I’m sorry.”

Why do we do that?

For me it’s that I feel bad that I have come into someone’s life &, while I am at times amusing & even helpful, I’m also a source of consternation as I am a constant reminder of the fragility of the human condition. I dunno. Maybe it’s just that having a friend with a chronic illness might be annoying to normal people. I wouldn’t know.

So while I lie here in flare as my cats periodically pat at me & I’m earning 0 money, I plot ways to get more normal. I try to figure out how I got into flare & how to not make a nuisance of myself because of it. I can’t control the random drops & rises in temperature Los Angeles throws at me, so that’s just a thing I surrender to: “I am going to go into flare & there isn’t a whole hell of a lot I can do about it except not make it worse.”

I can control my exercise. As much as I enjoyed strength training & as much as I’d like to do that again, it is clear after months of new levels of chronic pain that I’ve probably done more harm than good. I have pains in my shoulders & triceps that I never imagined were possible. That’s fine right after a work out, but it should not linger for 4 months, nor should it worsen with normal daily activities.

I know I should exercise though, as it’s been shown to help, but now that there’s evidence indicating that fibromyalgia is a neuroVASCULAR issue disguised as a neuromuscular one, I wondered if there were new guidelines. I stumbled across this article. It focuses far too much on those who have developed fibro due to psychological stress tension (which arguably mine is, in addition to numerous injuries throughout my life), but its discussion of fibro vasoconstriction & the benefits of exercise there upon are worth the long read.

Somewhere toward the end, it explains what I was doing wrong. Low to moderate aerobic exercise has the most benefit in reducing fibromyalgia pain & symptoms. They did not overly look at strength training, but they present the argument that blasting one muscle group at a time is not going to increase circulation to all muscle groups in a condition characterized by widespread pain. And I said “Duh, I knew that!” So why did I take up strength training?

Because I’m stubborn & aggressive & sometimes I like to pretend fibromyalgia doesn’t exist. I like to prove to Normals that I’m normal. Well, I’m not.

What I clearly need to do is get back into gentle, short frequent walks or recumbent bike rides, then add back in gentle strength exercise like crunches & band work. I should be circulating, then toning, not “building” per se because I can’t really build. My muscles’ foundation is sand. Even my trainer noted that balance is my biggest problem (I’m sure proprioception issues don’t help).

If I want to stop feeling like a little old lady, I have to exercise like one. Seems counterintuitive, but sometimes physiology is like that. Do I want to run & skip & jump & do 100 kettle bell swings? Of course. But if I want to hold down a job, it’s ill advised.

Plus I’m tired of telling people I’m in pain. Well, more pain than always.





The Long War

13 08 2013

Sometimes, the disease wins.

You did everything right. You got enough sleep, you ate clean, with plenty of fresh vegetables & lean protein. You drank a ton of water. You took your supplements. You had a hot shower & did low maintenance hair & make up.

But sometimes, the disease wins.

You drove to work. Your right shoulder wasn’t cooperating & hauling your bag was like dragging a sack full of horses in the mud. You took a client. You realized you were losing words. You were nauseous. Your stomach ached. You decided to take a walk for a couple of blocks to loosen up your tight left side; sometimes that helps.

But sometimes, the disease wins.

After nearly throwing up & knowing you will soon be too dizzy to drive, you go home. Your right leg is weak, or maybe your ankle; you’re not sure any more. Either way, you are somehow having issues applying the gas pedal. You have to try a couple of times to get it right. Luckily this is LA & therefore you’re still operating a vehicle with more finesse and awareness than everyone else on the freeway. You make it home safely.

Sometimes, the disease wins.

You are convinced there’s some kind of smell in the house. It’s very sweet. You hurt, but you take out the garbage anyway because you don’t want to throw up. You come back to the house & it’s still sweet. It’s probably in your head. You question your sanity, the will of God, whether or not you really got a gluten free wafer at Mass on Sunday, & if you should eat ever again.

You then remember that you felt like this before, & you got better. Your faith is restored. Maybe the smell is gone. Maybe you should eat, but not right now.

Sometimes the disease wins. Fibromyalgia is tidal. It advances & retreats. Sometimes it floods your house. But it is a long war, & it’s worth fighting.

You consider doing some more edits on your fibromyalgia book. The thought of lifting the lap top sends you into a near panic.

Sometimes, the disease wins.





RSVPish

22 02 2013

Friends of fibroblobs hear “I’m sorry; I can’t make it,” a lot. It breaks our hearts to say it, & we know we’re probably hurting your feelings. You only have one Christmas party a year, or one birthday, or one bar mitzvah. And we really wanted to go. We tried. But we also fell asleep while putting on our mascara. We fell on the way to the car. We couldn’t turn the key in the ignition, & our right leg cramped as we tried to pump the gas peddle.

We realize we’re pains in the ass. Please don’t stop inviting us.

“But how come you were able to go to The Who? The opening night of The Hobbit? Jenny’s tea party?” We were well then. We may actually have been kind of unwell, but we’d flaked on all those people before, so we slogged through it. Or we paid for a ticket or the friend was in town only one night. We’d already missed too much work, so we made it through the day & crashed upon getting home. We overdid it. Now we’re missing the pleasure of your company.

It is never personal. Sometimes we’ve shown up to things with you while in tremendous pain, but the fatigue wasn’t so bad that day, so we just dealt with it. People I talk to with fibromyalgia almost invariably tell me it’s not the pain that keeps them home (most of the time), it’s the fatigue. Imagine being in a 25mph car accident, but also not sleeping for two nights. That’s us in flare.

I’m very lucky in that I manage my disease well with diet, exercise, & prayer. There is not a damned thing I can do about the weather, horrible LA traffic, or overwork. Fridays I am almost a guaranteed no-show, as I’ve been at work all week & I have nothing left. Sometimes if a thing is close by, I can do it for a short time. Sometimes I will come, but I’ll be late. So please don’t stop inviting us. We’ll always try super hard.

Even if you say you don’t care what state we’re in, remember I have to think of my safety & the others around me on the road. Even if I get a ride, will the other people there understand that I just want to die & am not actually a bitch? If you remember me as that super fun girl who danced for an hour at the last girls’ night, will you want to see me as a decrepit crone?

If we tell you we have a flat tire or a family emergency, that’s the truth. It’s not a fibro excuse. We trust our friendship enough to tell you “I’m so sorry; I can’t make it. I am sick today.” You don’t have to understand. We in fact pray you never will.

If you do want a brief introduction to what it feels like to have a chronic illness, this is a fantastic and well known story by someone with lupus. It applies to MS, fibro, RA, & CFS, too.





When Feeling Better Leads to MOAR FLARE

19 02 2013

Working out, repairing & building muscle have, over just two months, decreased my fibro pain a lot & increased my functionality some. Subsequently, I feel like a normal person a lot of the time (as long as I ignore my personality).

The problem with feeling normal when you’re not normal is that you behave like a normal person. That is to say, you stop managing your time like a fibroglob & start allowing yourself to be scheduled like Justin Beiber on an international press junket.

…well, kind of. At least from a fibromyalgia point of view.

I now realize as my brain goes limp, my connective tissues go rigid, & my belly makes alarming noises that I scheduled 3 fibro unfriendly activities 3 nights in a row. Two were absolutely essential, but one wasn’t really & involved sitting still for 3 hours straight. I should not have agreed to it knowing exactly what else I had to do on Saturday & Sunday. If the extra activity had been essential, I should have gotten up & moved around so that my back wouldn’t freeze.

What was I thinking? Well, I wasn’t. Knowing I had a 3 hour drive on Saturday & a 7 hour event on Sunday, I still agreed to dinner with a client on Friday. I figured “It’s just dinner, in and out in an hour. Then I can shop for Saturday.” I ended up, three hours of sitting and one hour of shopping later, being in so much pain I couldn’t sleep. I made truly idiotic breakfast choices on Saturday, was stuck in traffic for 50 miles, but had a wonderful time with my family. Sunday was fun, but I barely ate all day.

Today it is cold & wet. I’m loopy & achy. I can’t form spoken sentences.

WHY AM I SURPRISED I’M IN FLARE?

Work was slow today so I came home for self care, which involves a lot of hummus. My stomach is much less rowdy. My neck has abdicated. My shoulders and hips are enraged. But I’m not making it worse by slogging through, providing crappy service, & sitting in one position for hours. I’m also not a hazard to other drivers with my fatigue (uh, any more). The idea is to be fully functional tomorrow rather than in a full fledged pain coma.

Healthy days are great, but you must remind yourself they’re precious & only exist with careful scheduling of activities. The temptation to overdo is nearly impossible to resist, but we must. Or you too will be on the couch in front of Bravo with a heat pad on your neck & this stupid cat screaming at me.