What is it like when Fibromyalgia's in the house?

What is it like having Fibromyalgia?
Written by the Fibrotic in the house, Moi.

It sucks, it hurts, it's pure evil.  I am constantly tired.  When I say tired, I don't mean I'm yawning, I could take a nap.  I mean it's hard to move.  Exhaustion equivalent to the flu.  When buttoning a shirt wears you out, you're exhausted.  I am constantly hurting.  When I say hurting, I don't mean I have a little tenderness.  I mean I have the flu in my muscles, but worse.  My joints are aching so badly, there are times I can't even walk.  When I gave birth, all four times, they thought I wasn't really in labor because I was smiling, I was talking, I wasn't screaming or crying.  Good thing you can prove you're in labor... If childbirth couldn't move me, believe me when I say I can be in tears from the pain Fibromyalgia causes me.  Your joints, and as gross as this sounds, forgive me, I couldn't think of a better comparison, feel like they're on their period.  That extremely (only if you have bad periods, like most people with Fibro do, mind you.) painful, dull, achy feel.  It's in your fingers and hands, too.  Your low back, hips, and for me, always, always, the knees.  That's the joint pain.  Muscle pain?  That one really does feel like the flu, but that one's worse, too.  Ya know with the flu how it feels like it's just so dang deep?  That's Fibromyalgia.  The only other time (pre Fibromyalgia) that I felt Fibro like symptoms without having the flu was when I went on a ten mile hike.  I had about fifty pounds of crap in a backpack, it was on a huge, uphill mountain, and I was out of shape.  That would be easy for someone in shape.  When you take someone who doesn't work out and have 'em do that, it hurts!  That was the only other time I felt that it was about the same.  It feels like you've been working out for days, minus the actual working out.  Imagine your muscles being THAT tired.  All.  The.  Time.  Plus the joint pain and utter exhaustion on top of it all.  Migraines (or Cluster Headaches in my case, which are ten times worse than Migraines.) are a constant companion.  Dizziness, being lightheaded, and nauseated non-stop are your constant companions.  There is a term referred to as "Fibro fog."  This makes you a total and complete retard.  You will be mid-sentence and you will forget what in the world you were talking about.  You will head to the kitchen for something you know was very important, get there and completely forget what you're doing there.  You will try to do basic math and find your six year old knows more than you.  You will put your keys in a very, very special, safe place, that way you'll never lose them.  You will spend the next hour looking for them.  You will forget simple appointments, you'll forget the things you really can't miss.  You'll take all your energy (try doing any of these things with the flu and see how successful you are.) just to take a shower.  You'll most likely need a nap from that.  It'll hurt to stand too long, it'll hurt to sit too long. Everything causes pain.  Sit too long, your bum goes numb, your joints and feet swell, it's hard.  Stand too long, your feet and joints swell.  We're high maintenance because it's hard to think, and it always hurts.  Ya know how you snap at those you love when you're giving birth or throwing up for the billionth time from the flu?  The pain gets old, huh?  And if your husband asks you one more time if you want a pillow for your back or ice chips, you'll kill him, won't you?  'Cause it hurts!  You've been in labor for twenty four hours straight!  Doesn't he get the hint?  This hurts, go away, leave me alone!  Fibromyalgia is exactly the same.  Forgive us for being snippish, we've only been "in labor" the last ten years!  No big deal!  We're tired of the pain.  We're tired of it hurting.  We're tired of having the flu for years on end with no relief.  My husband once asked me what it's like being pregnant and then becoming un-pregnant.  I told him it's a lot like having the flu.  When you have the flu, you realize how weak, sick and vulnerable your body is.  You totally took your health for granted.  When you get over the flu, you're feeling so much better, you're like, "yes!  I am going to go running six miles today, I'm gonna go out, have fun, I've been SO sick!"  When you've been sick for a while, you totally appreciate getting that health back.  It feels so good to be back to yourself.  I told him that's what pregnancy was like, only MUCH longer.  When that baby comes out, you can't wait to get your body back, start working out again, watching movies like you couldn't do before, because it was so uncomfortable, so painful, you're gonna do it all.  You're so glad to be back.  You never get that back with Fibromyalgia.  Imagine being pregnant or having the flu for the rest of your life.  I get how husband's can get annoyed with their wives.  Their wives are totally different, they're tired, they hurt, they're sick.  They know they'll get their wives back after that baby comes out, though.  Imagine the feeling of never getting your loved one back.  Imagine being the person who never gets their health back.  Yeah, it sucks.  I don't feel like me.  I feel like someone has completely taken over my body.  I don't feel like the happy, energetic, hard working person I was.  I feel sick.  I feel tired.  I hurt.  All the time, and I'll never get well again.  It's a bit of a downer.  Depression is a huge factor in Fibromyalgia.  Most everyone with it has it.  How can you not be let down when your type A personality (it's been proven most people who have Fibromyalgia are type A personalities, and perfectionists, which would be me.) keeps getting the shaft?  When you'd rather be out there conquering the world, and you're in bed, nursing your "flu."  It sucks arse, dude.  THAT is bound to cause some depression.  You're bound to have depression when you have kids that you can't take care of because you're sick in bed with the "flu."  When you'd love to go on a date with your husband, but the thought of spending the next hour and a half taking a shower, doing your hair, putting your makeup on would be the end of your night, you'd be too tired.  When you should be working, 'cause things are really tight financially, you WANT to work, and your body's like, "hey, lady!  Flu, remember?  Sick people don't go into work, remember?  They're too sick!"  The guilt is big, the depression, the heart palpitations, the swelling, the aching, the tingling, the numbness, the blurry vision, the chronic sore throats, the chronic dry eyes, the hair falling out in clumps, the skin rashes, the cold intolerance, the IBS, (Irritable Bowel Syndrome, a large part of Fibro.) the brittle, cracking, fragile nails, crooked spines, insomnia, hellish nightmares, night sweats, confusion, irritability, extremely painful PMS, periods from Satan, lack of sex drive, (for most Fibrotics, I got a little luckier there.) painful sex, (yay, Tramadol!) honey, it ALL hurts, chest pains, butt pains, tongue pains, eye-lash pain, hair pain, ok, maybe not those, but really, I don't exaggerate when I say it all hurts.  Sometimes the other symptoms are totally ok, because the pain just over powers them all.  It hurts to be hugged, it hurts to accidentally hit a wall, well no, it feels like you got stabbed.  It hurts to be touched.  My favorite thing to do.  It'll ache for a long time, too.  It's not like stubbing your toe.  When Fibrotics stub their toe, it's the end of the world.  Hurts more, lasts longer.  Oh yeah, we bruise super easily, too.  We can barely move, so how in the hello did I get a bruise the size of a fist on my arse?  Either it's the Fibro fog, and I was secretly James Bond last night, or I was in bed all day, Fibro just thought yellowish blue was a flattering hue for us.  Gosh, it hurts.  It hurts to try and have a normal relationship.  I suck at being a mom and a wife.  I can't do it period.  It hurts too much.  Your house goes to crap when you have the flu, you can't play with your kids as much, they're eating nothing but cereal, that's to be expected when you're sick.  When you have a sickness that never ends, your house is always messy, you can't play with the kids as much, and the hubby takes on more than he can.  HOW CAN YOU GIVE WHAT YOU DON'T HAVE?  People with Fibromyalgia try.  They try, and they try, and they try.  It doesn't help or work, it only makes the pain worse, making the help needed worse.  I wish my husband had a healthy wife.  I wish my kids had a healthy mom.  I am always asking my husband to leave me.  I can't leave him, I need him, and that would hurt too much to try for his sake anyways.  This brings on so much guilt.  So much guilt, pain and sadness.  If I weren't such a wuss, I totally wouldn't even exist anymore.  I can't tell you how much pain it causes watching your family suffer because of you.  Watching people be miserable because of you.  People you're supposed to love, supposed to take care of.  You can't, 'cause you can't even move.  It's not that you don't care, or that you don't want you.  You can't do it.  And this is Fibromyalgia.

If this doesn't kill me physically, it will kill me emotionally.

What is it like taking care of someone with Fibromyalgia?
Written by my husband, Adam.  

It is hard to take care of someone who has Fibro, especially when there is four kids, three cats and a dog that need to be taken care of, too.  Being the care taker of someone with Fibromyalgia means being on call 24/7.  You typically have to take on multiple roles, and the day is not done until everyone is in bed.  You become the diaper changer, chef, house maid, butler, bread winner and chauffeur.  It becomes very demanding, and draining.  My average day is up at 7:00, and go, go, go all day.  Then to bed at 3 in the morning, just to do it all over again the next day.  It gets hard to function sometimes.  Rachelle always jokes about how forgetful I can be.  She says that I am worse than she is with the Fibro fog.  I think that it all comes down to being spread so thin.  I work from 7:30 in the morning to 6:30 in the evening.  Many times I have to leave work early because the day has become too much for Rachelle to handle and her "spoons" have been all used up.  I have a two hour lunch break in the middle, which is spent cooking lunch for the family and cleaning up after kids.  When I get home from work at around 7:00 at night, I immediately start dinner and the house is a wreck, again.  By the time dinner is done, it is time to put the kids to bed, and try to clean up a little (which usually doesn't happen).  Rachelle is usually stressed to the max from spending the day with the kids, and so we stay up until about 3 a.m. to unwind.  I am then up at 7 for the next round.  Even on weekends, I am usually up earlier than I would like because I try to let Rachelle sleep as late as possible.  I do try to get in a nap if I can time it right with the baby’s nap. By the end of my day, I am exhausted and brain dead.

Along with the physical strain of taking care of someone with Fibro, there are many emotional stresses as well.  Being the sole provider, I really stress about finances.  Being a poor college student and having 6 mouths to feed, I know how important it is to get as many hours in at work as I possibly can.  This, however, can be hard to do when Rachelle is having a bad Fibro week.  Fewer hours means a smaller paycheck.  This means we have to do without quite often.  This makes it real hard when the baby needs wipes, and the car needs gas.  It is difficult to not be able to provide for the needs and wants of your family.

There is also the stress that comes from your Fibrotic loved one.  With Rachelle being in so much pain and having to deal with the kids while I am at work, she is stressed to the max.  When I come home, or on the phone throughout the day, that stress is passed on to me.

Probably one of the most stressful things about the Fibro, is the guilt.  When Rachelle ends up doing something and paying for it later, I feel really guilty that she did it in the first place.  This can be applied to the simplest of tasks.  For example, if Rachelle has to get out of bed to get a drink for one of the kids, I immediately feel guilty that I didn't get the drink instead of her.  I understand that she is in pain, and I want to take care of her, so I feel guilty when she has to do a task that I could have done for her.  I also really feel guilty that I am at work while she is suffering at home while dealing with the kids.  I know that I don’t have much choice in this matter, but I do wish that there was something that I could do to make it easier on Rachelle while I am at work.

Living with someone who suffers from Fibromyalgia is very challenging.  It is hard to plan activities, or go on outings.  If you do get out and do something, then you need to plan for recovery time afterwards.  There is so much more responsibility that you must take on.  There are also so many more stresses that you must take on.  Taking care of someone with Fibro requires so much patience and understanding.

It also requires so much love. I love my wife more than anything, and though it can be hard at times and is physically and emotionally demanding, I love being able to take care of her. I am thankful that I have the means necessary to take care of her, and I know that if the roles were reversed, she would do the

same for me.

What is it like having a mother with Fibromyalgia when you're six years old? 

Written word for word by my six year old, Alee.  

Well, sometimes it's good to have a mom, but sometimes it's sorta boring to have Fibro.  I was wondering probably about Fibro, they probably have to rest to get good the next day.  Being Fibro, you be so tired, so you try to go to sleep.  If you can't, you just have to take some medicine pills, but sometimes you have a hard time with the pills.  So, probably, I've been thinking that Fibro people have a lot of problems.  If you can probably try to get as much rest as you can, you'll feel better.  You don't get to play with a mamma that has Fibro, so you should just leave her alone until she feels good.  It makes me feel bad to have a mamma that has Fibro because she has to sit all day.  She used to be real fun, though.  One time, I saw her playing with us in the house we lived in before she had Fibro.  Every day, she gets rice packs so she can feel good, sometimes she needs lots of love.  She might have a hard time playing and watching little kids.  I was wondering if Fibro people should get lots of money.  If you don't have lots of money for a doctor who can get rid of Fibro, you have to learn how to live with it.  You should know that Fibro people need a lot of help if they have little children.  They also really need lots of sleep if they have Fibro.  So, if they have children, they need lots of caring and they need lots of helping.  If you really need help, just call the police if you don't know what you need to do.  Call the ambulance if you need to go to the hospital.

To have Fibromyaglia is to be lonely, to suffer, and to deal with more guilt than is bearable.
It takes twice the effort when there is Fibromyalgia in the home.