Thursday, January 31, 2013
I think balance is an issue for most of us and I sure wish the doctors or scientists, whomever is trying to find the answers to this wonky disease, could tell us why that is.
I would swear that the doorways in my house move as I smack my hip against them over and over. I know where they are, the dimensions but still, I cannot seem to help misjudging every time and get a bruise to show for it. I stub my toe more than 'normal' people do for the same reason - "did the couch just jump at me?"
I have clearly seen a toy or something laying on the floor as I walked towards it and seconds later, tripped over it. Is it my vision that is skewed, my depth perception or is there trickery going on in my brain?
I drop things constantly. I have dropped the cap from a milk jug (let us not even talk about how hard it is to get that cap off sometimes because my hands hurt) and bent over to pick it up only to drop it again! I just stand there, staring between the cap on the floor and my hand, thinking - Really? Really?!
My husband and children have watched this dropsy, toe stubbing, hip banging and tripping, all while shaking their heads. The look in their eyes clearly says - We may need to put her in a home. (I'm joking, they would never do that. I hope.)
All of it is so frustrating and yes, at times it makes me sad and angry that fibromyalgia affects my life in so many ways, most of them very fundamental. But I try to laugh, even at myself and accept that living with fibromyalgia is much like living in the distortions of a funhouse. The skinny mirror is my friend.
I first came across Shepp's videos on forums that we both belong to over on MD Junction. She had just posted her first vlog in an effort to share chronic illness & life in general with whomever watched.
I really liked her relaxed and easy way of talking and explaining different facets of this life that we lead so I emailed her. I asked if it would be okay to share some of her vlog posts on my blog. She was kind enough to allow that and I have chosen this one as the first of many, I'm sure, that I will feature here on Why Are My Keys In The Fridge.
The reason I chose this as the first one is because it made me laugh all the way through. I do empathize with her plight - not being able to get comfortable, relax and rest. I have fibromyalgia as well so have had many moments of beating on pillows, kicking my feet against the mattress and blankets while growling my frustration.
But to watch her flop and make the crazy eyes made me grin because.. well, you just feel like someone understands, like you have a friend out there that you've never met. And laughter is the best medicine.
Thanks for that, Shepp! Keep vlogging!
Wednesday, January 30, 2013
Yesterday, it was almost 60 degrees here. It poured rain and really felt more like spring than the lingering days of January. Today, it was 10 degrees and it snowed four inches. This kind of weather change, especially the really cold part is very hard on people with fibromyalgia.
I'm praying for late spring and warmth. I wish for days that I can happily go outside, tip my smiling face to the sun and soak it in like something waiting to grow and be beautiful.
But until then, when I'm feeling like a prisoner in my own home, I listen to my beloved Beatles, snap my fingers, do a little butt wiggling while I sing along - "Little darlin, here comes the sun and I say it's all right."
Monday, January 28, 2013
**A woman that belongs to the same fibromyalgia forum that I do on MDJunctions was nice enough to send me something she wrote for medical professionals where she lives. I think she did an incredible job putting into words just some of the things we go through as people with fibromyalgia. It's my honor to include it here. Thank you again, faroutback!**
I've had fibromyalgia for 22 years.
The first challenge was getting a diagnosis; there were doctors that diagnosed me with depression, type A personality, and anything else except fibromyalgi.
After a long search, I have a competent, meticulous rheumatologist who is up on the latest about this condition. He is a doctor who supports my exercise routine and encourages me to do more when I am able. In every sense, I am medically well-cared-for, I can pay for good hospitals, medication, and doctors, I have a profession I love, activities I adore, and a couple of friends who are like my sisters (one of which also had fibromyalgia). My family understands my condition and my husband supports me in everything. Within the context of chronic illness, no one could have more support than I do.
But if we talk about quality of life, what I experience every day, and what others see, it is another matter.
Every day I get up not knowing if I can go out to walk or jog, or not. I know that if I don't do it in the morning, I won't do it at all even though it is medically necessary. I only function in the mornings; after 3 or 4 in the afternoon, fatigue defeats me. At seven or so at night I fall asleep wherever I am. But if I don't manage to do some kind of exercise, I feel guilty. I console myself with food, a completely self-destructive behavior.
The stress of having fibromyalgia makes me vulnerable to depression evary day. It's a process of attrition, of wearing down, that over the years finds no remedy in family pleasure because I'm too tired to look forward happily to events such as birthdays or Christmas, but rather with horror since I think of the deadly tiredness I will wind up with. I can't stay up late or have more than a single glass of wine. Plane trips kill me because I can't spend more than a couple of hours without moving around; my whole body begins to feel as if it were on fire.
After a spell of doing exercise, something always interrupts the program: a migraine, an exhausting digestive upset, a climate change that activates every pain in my body. I know beforehand that nothing lasts, neither the good days nor the bad, but as time goes by, the bad days begin to increase in number.
I can't concentrate on reading matter, nor think methodically, because the fatigue isn't just physical. It invades my mind, my desires, my hopes, the projects I know are just dreams that can't come true. Out of respect for the people who seek me out professionally, I am retiring except for time-limited activities--workshops, talks, courses.
Guilt lies beneath everything: I am not the grandmother I want to be, the wife I once was, the mother my children deserve. And that guilt that comes from the absolute necessity of saying "no" to so many choices in life--that it is necessary doesn't diminish the guilt. Women are brought up to serve, to put others first, and though we have been able to get rid of many of these behaviors, crumbs of guilt remain.
What I do now must be at home, not involve driving too far or being in places where I can't rest. I have dizziness, nausea, pain, indigestion, and a deadly exhaustion. And I am one of the people with fewer symptoms of fibromyalgia, others are in infinitely worse shape than I am. It has gotten to the point where I notice immediately if I feel good--the absence of symptoms is wildly noticeable because it is so infrequent.
A doctor told me one time that if I hadn't said I have fibromyalgia, he wouldn't know it because I seem so well. That remark represents the difference between a medical outlook and mine when it comes to quality of life. It has become so diminished that I am not the person I used to be, and I will never be that person again. I have wanted to go live alone in an apartment just to be able to stay in bed all day without affecting anyone else by doing it. I feel like I can't live with people or alone either. Only responsability and self-esteem kick me out of bed and push me to do something worthwhile, no matter how minor or insignificant--making up a bed, trying a new recipe, starting a spring garden.
I live always with the fear that some day will come when that won't be enough to get me to participate in life.
Thursday, January 24, 2013
Fairytales are hopeful and inspiring. There is the part where hardship must be overcome and the characters decide what and who they believe in. They must transform into who they are meant to be. There is always a moral to be learned.
Maybe this blog can be a fairytale. It has or will have all of those things. It's not only about chronic illness but life - joy, sorrow, hurt and anger, laughter, so many tears but even more smiles.
It's my story of being magical. Just like a fairytale.
Wednesday, January 23, 2013
As people with chronic illness know, medication is a big part of the life we lead. Some are able to embrace needing it to have a better quality of life. Some fight taking medication because they may perceive needing pills as a weakness in themselves. Others may have former substance abuse problems or family members who have had addiction issues and may fear becoming addicted to the medications themselves.
The possibility of addiction is my reason for a three year battle with the prescription medications that I take each day. Both of my parents are alcoholics. They successfully detroyed not only many aspects of their own lives but the childhoods of myself and my two brothers. Being raised in that atmosphere is like a cancer that slowly spreads and leaves behind it scars and dead things.
Because of my past, it was important to me to do things differently as an adult. Not to drink or do drugs and to raise my children with patience and love. To be the best person that I could. And above all, to be coherent and present in every moment of my life and the lives of those I love.
I have had fibromylagia for three years and things are different now. Although I know that taking medication is almost always a choice that we make; when you're ill, injured, in pain or have a disease, the choice becomes more blurry. Taking a heart medication to help with blood pressure is easy. Taking a cholesterol medication to change those numbers seems like simple common sense. Taking insulin for diabetes is just trying to control a disease.
But when your illness or disease is about pain, it's different. We may feel like we should be strong enough to deal with it. When we cannot cope, when we give into the pain by taking medications designed to control or alleviate it, we may feel like we somehow failed. We may feel guilty. But, suffering every moment of every day, as people with fibromyalgia do, tears down resistance, our beliefs and even our fears.
Pain doesn't care about bad childhoods and memories. It doesn't care about our need to be strong and present in the lives of our children. Pain doesn't care about our desire to work and be productive, successful. It doesn't care if we feel weak every time we reach for those orange bottles.
Our medication is about pain. Narcotics, muscle relaxers, anti-depressants that are used to dull the pain sensors in our brains. Our medication makes us less mobile and coherent. It makes us lethargic, floating in and out of a conscious state. We begin to wonder if having less pain is a good enough trade off to truly enjoying our lives and being active within them. Nobody should have to make that choice but we do - everyone with a chronic pain illness must. It is not easy - it's sad to live as a paler version of yourself.
Thursday, January 17, 2013
Recently, I found this video on Youtube by a young man who was describing his life with Lyme Disease. I watched the whole thing and then watched it a second time. He's obviously very bright, articulate and his story was interesting.
He did a great job of talking about what people with a chronic disorder or disease go through. The 'hats they wear' as he puts it. I hadn't thought of it that way prior to viewing the video but afterwards, I did.
He discussed being a patient, researcher, doctor, caregiver and provider. All of those are true but we are also wearing the hats of a 'normal' person.
* Young person still in school.
* Adult child taking care of an elderly parent.
* Husband, wife, girlfriend or boyfriend.
* Mother, father, grandmother, grandfather.
* Sister, brother, aunt, uncle.
* Employee, employer.
* And so many others, too numerous to list.
I've been a mom for 22 years so I'm used to wearing a lot of hats. Any mother or father, for that matter, knows how that goes - our job as a parent encompasses so many things. But being a sick person is a whole new ball game. We now have to wear all of these hats while we're in pain and with far less energy and stamina at our disposal.
We struggle to accomplish what we did before. We want to be all that we used to be, not only for our family and friends but for ourselves. We want to be thought of as strong, worthwhile, successful.
But as we progress in our illness, those things become harder and harder to achieve. We become unable and the process of accepting that is emotionally and mentally difficult. We have to line up the hats that we wear and begin picking and choosing. We cannot wear all of them, all of the time. And at some point, we have to actually discard some of them permanently.
For a person who is ill, it really does become a matter of survival, of taking the best care of ourselves that we can. We are taught not to be selfish and to put others first but at some point within an illness, it's mandatory that we put ourselves first. Once we do that, the hat we always put on first is our own.
I have included this young man's video in the post. Please take the time to watch it. He put time and thought into expressing a patient's view point and did very well with a tough subject.
Wednesday, January 16, 2013
|Elephant does a balancing act, all for a flower from a baby.|
People with chronic illness often use the words bad day or good day to describe how much or little they are suffering with their disease. When it's a bad day, I have to believe that looking at this picture for a few minutes cannot help but make a person smile and feel a little bit better.
I've always been a believer in researching any symptoms of illness or diagnosis that you may have. In today's world of easy access to information via the internet, there's really no excuse not to be educated on literally any subject you can type into Google.
That said, information can turn into the enemy. You plug in your symptoms or the diagnosis and the next thing you know, you're faced with a list of possible illness, disease or affliction. Everything from a common cold to
Sometimes, research can be frightening. As intelligent as we believe ourselves to be, we did not go to school for the required kajillion years to get a PhD in medicine. We may misinterpret what we're reading. We are not going to understand all of the terminology used.
All we can do, really, is try to be informed, proactive with our health and then take that to a doctor when we need them to find the answers. Oh, and don't stress ourselves with the worst possible scenario. There's plenty of time to do that whilst staring down the Excalibur sized needle coming at us.
I was talking with Tony last night about, well, poop. I was very stoned on pain medication, muscle relaxers and that is my only excuse for going off on a bender about my digestion problems. I have IBS - Irritable Bowel Syndrome - and it is a pain in the ass. (Puns are always intended on this blog.)
I had not been in sharing mode for long when he said he needed to go AFK. (Away From Keyboard, for those of you who may not know the lingo.) Maybe he needed to get a drink or feed the cat. Maybe he needed to laugh at me or possibly, he needed to step away and gag. Whatever took him away, I didn't let it bother me - I just kept on typing.
I told him the story of my day with IBS. How I had forgotten to take the Miralax the doctor told me to take every other day. I said that I was very disenchanted with the IBS medication they had prescribed because it didn't seem to be working at all.
I filled him in on how IBS can cause diarrhea or consipation but for me, it was usually the latter - compacted bowels filled with poop that wanted to stay awhile. That IBS makes us very gassy and the gas pains are gut-twisting agony. And how.. if I could just fart, I would feel so much better. That I was praying for one long, preferably silent and non-smelly fart that would take all of the pain with it.
I had no shame. I felt like he
I told him that I was sure when I woke up the next morning and was no longer high as a kite, I would be mortified by what I had shared with him. The first thought I had this morning was - Did I really talk about farting last night?
...Yes I did. Boo.
Tuesday, January 15, 2013
Sometimes, I just want to do for me. I want to be selfish. I want to take every minute of a day, maybe a whole week and do nothing but what I want to do. Nothing but what makes me happy.
I do not want to worry about other people's happiness, their comfort, their needs. I don't want to run errands, pick up things everyone else needs. I don't want to make calls that sort out other people's issues. I don't want to cook meals for other people to eat on dishes that I will need to wash for the next meal that I cook. I don't want to dig through the never-ending pile of laundry to find that one pair of jeans that someone needs to make their tomorrow better.
I don't want to drive people around, go pick people up. I am not a taxi and if I am, I'm free. No tips, either. I don't want to schedule my life around the schedules of other lives. I do not want to get a speeding ticket because I'm late for an appointment that isn't my own.
I don't want to keep getting up out my chair when someone needs that something they forgot to mention when I was up the last time. I don't want to peel my eyes open from a deep sleep and roll myself out of a warm bed to face the cold of a winter morning simply because someone made plans for me without the courtesy of asking if I wanted to do that or be there, in the first place.
I don't want to take myself away from the good book, the hot bath, the warm dinner, the needed nap, the stretch of sore muscles, the fun of internet surfing, the singing of a song playing in my headphones because everyone demands me that very moment.
I was perusing Pinterest recently (as I often do) and came upon this photo. While it may seem that it has nothing to do with being sick, in my mind, it did.
I thought about the Fibromyalgia forums that I belong to and all of the people there that post each day. Maybe that forum is its own depiction of that photo - a group of people, linked by illness, but still feeling lost. All of us are waiting to be found. By a cure, by loved ones who understand, by people willing to listen or simply by having a good day with our disease.
The sky blue of early summer had drifted into a midnight moon
I danced in the rain, each droplet little kisses on my face
The scent of fall is in burnished breeze & golden leaves
I walk barefoot down that old road, singing a slow, sweet song
If I stop by that ancient oak and carve your initials
Will you find it and carve mine?
I just love that he understands that about writers. The solitude necessary and how difficult that can be. And that he calls it an art form.
Sometimes, I think people don't see it that way. That writing is an art. Maybe they think - how hard can it be, it's just words on a screen or on paper. Big deal.
They may not understand that it's very much like slitting your wrists and using your own blood to write 'just words'. You have to put everything into it - Your mind, heart and soul. You have to find the right words to convey those things and it seems like no words are good enough.
Sometimes you're just plain terrified to give that much access to yourself, to be that raw for others to read. The words we end up deciding to use, that is what gives the reader a direct connection to our psyche.
We find words that best convey the thought or emotion and then we string them together to say - this is how I think. This is how I feel. This is me.
Nobody else is going to write our thought or emotion like we ourselves do. It's a very personal and unique thing.
This is one of my favorite scenes in the movie, "My Best Friend's Wedding". I think the sentiment that Dermot Mulroney expresses to Julia Roberts is so true. When you feel love for a person, you have to say it, tell them right in that moment.
Whether it's a new relationship or one of many years, when that person is doing the smallest thing that makes you pause and think - I love you - say the words too. Those moments can be so fleeting and pass us by in the next breath as we continue with the day to day details of life.
Never feel too shy or awkward, never feel insecure about expressing your emotion. Three little words can be everything another person needs to make their day full of joy.
Saturday, January 12, 2013
While making chronic illness playlists on 8tracks.com, I found a video that really spoke to me. I like the song itself - it's peaceful, quiet. That appeals to me always but especially during those times where I have a lot of noise sensitivity. But what reached out to me was Sandra Bullock's two whispered lines at the beginning. I hope all of you can relate as much as I can to those few, desperate words.
Friday, January 11, 2013
I'm absolutely in love with this song by Rob Thomas (of Matchbox Twenty) called - Her Diamonds. He wrote it for his wife, Marisol, about her battling a chronic illness similar to Lupus.
A more comprehensive story about her illness and the song can be found here: Her Diamonds
I think the video does an amazing job of depicting what it's like to live with a chronic illness and the beat makes me groove and dance which is pretty great for someone who suffers debilitating pain. It makes me smile, lifts me up and reminds me that there are people who not only try to understand and advocate for us but also love us in all of our moments.
On the forums that I subscribe to, there was a post recently asking us to answer how much time we put into the following. These were my replies:
Thinking About What Do About The Condition - I put thought into how to live a better life with this. What can I still do with my loved ones that won't hurt as much or put me into a flare. I don't think about how to 'fix' myself physically very much. I know that it is.. what it is. I try to do some stretches in bed, keep motivated and make myself get up every day.
Reading About It - I read any new research that I come across. I read a lot here, what other people are trying or going through. That is a double edged sword though. While reading here educates me more than I can convey, it also depresses me at times. To see so much hurt and suffering on every level is hard. To read the stories from the young people who are newly diagnosed is just so sad to me.
Talking About It - I talk about it with Tony. He's the only one that I really share every moment of my journey with. Talking about being ill can be difficult for so many reasons and it's also tiring. Not great when I'm already worn out. If I'm going to take the time and use the energy to communicate my illness, it has to be with someone who is going to listen and really hear me. He does.
Doing Research - If I get a new diagnosis, I research like a mad woman. I researched fibro like crazy as well, when I was diagnosed. I -need- to be my own best advocate and I don't know a better way to do that than to educate myself. Now though, I have a solid grip on current illnesses and unless something new comes up, I don't research because mostly, it's more of the same.
Being On Support Forums - I do check in here daily. There's always a new thought or feeling from the folks here. Or, even if it's an old thought, something that has come up many times before, I still want to see how everyone is doing and try to reach out, if I can. All of that said, there are times where I have to step back from here because of what I said earlier - It makes me sad to see the suffering, I get depressed so I need to take some time to get past that.
Looking For Anything That Will Help - There is nothing that will help. That is only my opinion though. I medicate to take the edge off the pain but it doesn't make me pain free. I stretch to try and work the worst of the kinks out but the ache is still there. I sleep (when the insomnia allows it) and that gives me a little more energy to do things when I wake up. I make myself get out of bed each and every day because my greatest fear is that if I allow myself to stay in bed all day just one time, the next time will be easier and the time after that will be easier yet. I fear that downward spiral into being bed-ridden. I cannot allow that to become my life so the best thing I do for myself is get out of bed and make myself -live-.
What does a flare feel like?
I can feel it coming. If I used a car analogy for how it builds by increments, it would be this: The beginning of the flare is the car idling in neutral, the accelerator being pressed down slowly, steadily. Just a little bit, enough to hear the motor rev. Then a little bit more, the RPMs climbing, that needle on the dash jerking. Then another press of the accelerator and the needle slams over into the red zone, pegged and jittering, threatening to blow the motor as it whines, roars and vibrates the ground beneath of it.
You are along for a ride that took just a short time to go from idle to insane speed down blacktop, and all you can do is hold on and pray for the medicine to work quickly. You hope the medication dulls the edges of an agony that feels like an ocean's worth of waves rolling over you, pulling you under even as you struggle to swim back to the surface.
I can explain a flare by sensation. For me, it begins with tension. Muscles stiffening, coiling into tight balls. It is throbbing, pulsing along with the beat of my heart in any area of the body being afflicted in that moment. It is the deepest ache, like having a flu in my muscle tissue and bones. It is stabbing pain - like a screwdriver being driven and turned into my hips, an ankle, shoulder blades.
It is the burning pain of a broken bone. If you have ever broken a bone, you know what I'm talking about. It burns hot, like your bone is on fire from the inside out. It is muscles feeling as if they are tangled in knots as they spasm. It is the slightest pressure being put on the body feeling like a full on punch that leaves a purple bruise.
It can be any one of those or a combination of many, all at once and all over your body. Torturing you with a barrage of sensation until you want to crawl out of your own body, hide in a corner and watch it writhe out its pain. You would like to wait until the flare is over before resuming your own skin to live with the 'normal' pain of your every day life.
I can explain a flare by mentality - a conversation you have in your head: I'm laughing hysterically because it's ridiculous that any living thing can bear this level of agony. The little cry face on the pain chart? That does not pertain to this. When I am done laughing like a lunatic because the agony has pushed me over into Crazyville, I will not cry. I will curl into a fetal position on my bed, rock and bawl my eyes out.
I can explain a flare by emotions. It is feeling pain so deeply that you view your body as the enemy attacking your spirit. You sometimes hate the vessel that you live within. It is a profound sorrow because you are never more aware of how debilitating a chronic pain illness is than when it is in a flare. It is anger - a devouring rage that you can live like this and have others not believe Fibromyalgia is real or that you could be faking something so horrifically life changing. It is fear, not knowing when the flare will calm down, fade back so that you can take deep breaths again.
A flare changes who you are in that time. You want to lash out, beat your fists on something. You want to become a child again and have a temper tantrum. The pain is so overwhelming that something very instinctive within you needs to release it however you can. Like maybe if you have that tantrum, scream and rage - some of the physical pain will transfer to them and you won't have so much to carry on your own.
You become intolerant. Your brain, your body are so overcome with agony that anything beyond that feels like sensory overload. Music, voices, light, smells. All of it becomes too much to bear when you are in a flare. The only thing you can focus on, are allowed to focus on is the misery crawling into every crevice of your body, digging its claws in to take hold.
You know, even when tortured, that to snap at those you love is wrong. They do not deserve it. They should not have to share your burden by becoming the punching bag you flail yourself against. And you know, realistically, that you really do not get to transfer physical pain by doing any of those things. It's just that you are in a very dark place, being controlled by pain and it is every breathing thing's nature to fight or to flee.
You know that you cannot flee. You do not get to leave your body and come back later, at a better time. So you fight what your body is doing, what your mind is thinking, what your spirit is feeling until you are exhausted. And that is the final explanation of a Fibromyalgia or chronic pain flare.
It is exhausting on a level that defies words to describe it. Living through pain that is so powerful it sucks the breath out of you, makes you weak. Crawling, dragging yourself across the floor on your elbows towards a bed seems like too much work. Maybe the medication has finally taken hold and dumbed down the agony, left you staring at a blank wall, swaying in a chair, counting each slow blink of your lashes.
And you are grateful. You're finally tired. You're finally in a place where you don't want to claw your own skin off, rip your hair out and beg for mercy. You are no longer spasming, vibrating with hurt. You can finally sleep - sink into the abyss of darkness and pray that the lightning bolt pain of what they call a flare does not wake you, demanding a round two before you have time to rest.
I was recently talking with Tony about how sleep affects Fibromyalgia. Specifically, lack of sleep. I thought I might make a post of it to see if anyone else feels the same way.
If I don't get enough time to sleep off the medications and recuperate from the prior day's pain, I wake up with severe med-fog that I have to fight through for the first hour or two that I'm awake. I can feel my body communicating with me, saying - "Well, you're going to have a bad day right from the start because you didn't get enough sleep last night."
What sleep does for me is bury the pain. No, it's never gone completely. I wake up in pain. But, the sleep buries it under layers. The more sleep I get, the deeper the pain is buried. It doesn't have those sharp edges, it's not as horrible. It's down there lurking though. As each hour goes by, another layer is gone and the pain gets closer to the surface.
It's like.. fingers coming out of that deep place where it was buried, extending to the surface, catching hold to pull itself up and out and then it just sits there, crouching, watching me and waiting. I sometimes imagine the pain stretching, yawning, waking up. It begins building and getting stronger as the day goes by. More fierce and violent. And as the pain does that, my body gets weaker.
My body cowers before the pain, it trembles and tries to hide, shut down. Sleep put the pain under those layers and now my body wants to go to that place to save itself. I become more and more exhausted as the day wears on, just from suffering.
If I do not get enough sleep to bury the pain under those layers, it needs less time to find the surface and take over. And then I have a bad day, all day. I'm not in control at all, it is.
*As a sidenote, Tony said I should write horror stories because it sounded like one.
*The picture above was taken from a very good article on a similar subject: http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=17249
I decided to make a list of things that I forget due to the fibro-fog, in my opinion. Feel free to leave a comment mentioning your forgets!
1. I forget to shut off the stove & oven.
2. I forget where I am while driving. My daughter will gently tell me that I have taken a wrong turn. It's a route that I have taken a thousand times before.
3. I walk into Wal-Mart and stand there, probably obstructing the flow of people-traffic as I try to remember what I came in to buy. I know I just needed a couple things but not only can't I remember what they were, I cannot remember where stuff is at in the store.
4. I take a shower, wash my hair and forget to rinse out the cream rinse. I get out of the shower, brush my hair and feel it still in there so have to get back in to rinse it out.
5. I wash my hair in the shower but forget if I did it or not so end up doing it all over again, just to be sure.
6. I put deoderant on after the shower and cannot recall a few minutes later if I did it so I go back to the bathroom and put more on. Better to be safe than stinky.
7. I forget if I brushed my teeth or not. A quick rub of my tongue over teeth answers that question.
8. I make a glass of ice water or sweet tea and almost always leave it sitting on the counter when I walk out of the kitchen.
9. I forget if I paid a bill or not and get rudely reminded that I did -not- when I get a cut off notice in the mail.
10. I take my medications and within ten minutes, have to check the pill container, thinking I didn't take them yet.
11. I forget what day it is all of the time. Because of that, I forget and miss appointments and events.
12. I go to the store and realize in the check out line (usually with a cart full of stuff) that I forgot my purse and have no way of paying for anything.
13. I forget that I am in my pajamas when I head out the door to run an errand because I live in pajamas.
14. I forget what I was saying in the middle of a conversation. I have to stop and think about what I was just talking about, find my train of thought and begin again.
15. I forget words. When I am talking, writing or typing - I forget the simplest words. Example: "The other ... Umm, I can't think of the word for dark outside.." Other person: "Night?" Me: "Yes! The other night.."
My normal temp is around 97.6. If it's much over that, I have a fever and I'm sick.
But, I have noticed, especially lately, that my body's internal thermostat seems to be broken. I can't self-regulate very well at all. I'm very cold and then I'm flushed and sweaty, back and forth, over and over and over.. all of the time.
It's 50 degrees outside at night and I'm still putting the air on for 30 minutes, then I start to freeze, turn the air off and put on a sweater. The process begins again. It's very frustrating!
I really have come to believe that my brain is just broken - like a light bulb that is not screwed in tight and flickering constantly, not sure if it wants to work or not or be on or off.
*Faucet picture courtesy of: http://lastchancetraining.com.au/
I do believe Fibromyalgia is progressive in all ways - physically, mentally, emotionally - and this is why:
Some people will say that Fibromyalgia is not progressive because it does not actually harm or degenerate the body organs, bones, muscles or brain. I'm not so sure about that. There have been diseases in the past that were not understood, not even believed to be real. But over time, years and years, with tests, autopsy and medical research, those diseases or syndromes were not only found to be real but also to have done damage to the body and the brain.
There is so little known -factually- about Fibromyalgia at this stage that I believe it could be doing damage to our bodies/brain and quite possibly, science and the medical field have not yet caught up with that.
As I read through the posts on a Fibromyalgia forum that I subscribe to, what astounds me is how similar so many of our stories are. How our Fibromyalgia began, how it manifested itself. So many people say that the first inkling they had that something was wrong was an exhaustion that no amount of sleep helped. Many say that the first body part afflicted was their feet. Many of us say that over time, that pain spread from feet to every area of the body. And the pain became worse. Less good days, more bad ones.
I said to someone I love dearly, after sharing some of the posts from this thread - "If only the medical community, the SSI people, the non-believers of Fibromyalgia would read through some of this - they would have to see that this is very real, that something similar had to happen to all of us, something "broke" in each and every one of us."
When I was diagnosed three years ago, I had a lot of good days and some bad ones. The pain did not last as long on those bad days. The pain was not as excruciating as it is now. I was not so horribly exhausted. My mental faculties were not as scattered.
I have very -literally- been able to feel the progression of Fibromyalgia on every level.
I give kudus and respect to those people who have found ways to deal with Fibromyalgia. Whether that be medication, meditation, exercise, diet changes, alternative medicine, etc. However, I am not one of those people.
I tried Cymbalta, Savella and Lyrica - the big three. The side effects were awful. I quit using them because of it. Fibromyalgia is bad enough without adding those side effects to the life I have to live.
I have tried exercise. No, not boot camp programs or high powered aerobics. No spin classes or Zumba. Jillian Michaels can kiss my ass. But I have tried walking, stretching, low-key exercises. I'm sorry, but there are days, a lot of them, that I'm in so much pain, there is no way I am doing anything but laying in bed and stroking the bottles of pain killers & muscle relaxers while crooning - "My precious."
This is what I know for a fact about my life with Fibromyalgia: I am much sicker than when I was diagnosed. I do not feel well.. ever. Even my good days aren't that great. The pain is all over my body now and nearly constant. My short term memory is worse now. I forget more easily, more frequently. The exhaustion I feel is absolutely debilitating and also almost constant.
This is not a flare. I know what a flare is, I have them. Even as bad as the Fibromyalgia is for me as it has progressed, in a flare.. it gets worse.
I am fortunate because my Rheumatologist also believes that Fibromyalgia is progressive. He uses the term - "full blown" - and tells me that I am, at this point, full blown Fibromyalgia. What he means by that is.. there is a point where Fibromyalgia reaches a plateau, where it becomes extreme on a daily basis and stays that way consistently.
I don't mean for this post to be depressing. But, it is factual from my perspective. Like so many others with this disease, I have refused to give in, to give up.
But, here is further proof of progression: It is far harder to do the most basic things than it once was. I have to pick & choose, each day, what I can do. Cooking, cleaning, laundry, running errands, spending time with loved ones.
There are more days that I cannot do anything at all, as much as I truly want and even need to.
I am no longer in control - Fibromyalgia is, because it has progressed to the point that I have to work within the parameters it gives me every day of my life. I believe that's all any of us can do - accept the limitations, however mild or severe, and work within them.
Anyone that has a difficult time with or can no longer - receive a hug, pick up their child or grandchild, cook the most basic meal or even remember when they last ate, work to contribute to their family, gets lost on the way to the grocery store, or dreads running out of medications - knows that Fibromyalgia is, indeed, horrifically progressive and continues to change their lives every day.
The worst thing you can do at the onset of this and really, for the rest of your life, is to blame yourself for any part of it.
Yes, at this point, Fibromyalgia is a lifelong disease, there is no cure, sadly. I would like to fill you full of hope and good stuff but I believe in honesty. So, I will say this:
You are at the beginning of a very long road. You'll probably try different medications until you find the 'cocktail' that works specifically for you. Some of us are on Lyrica or Savella or Cymbalta - they call those the 'big three' because they are the most used to treat the symptoms of Fibromyalgia. Some of us could not tolerate any of those - the side effects can be rough, but not for everyone. So we might take muscle relaxers, pain pills, sleeping medications, etc.
It truly is trial and error to find which meds work in tandem to help -you-. Never be afraid to return to your doctor and say - "This isn't working for me. Let's try something else."
And that's the next thing I would like to address. Doctors. So many of us have gone through a few until we found one that we felt really listened and would work with us for the long haul. Do not be afraid to communicate every little thing to your physician - every symptom, every pain, every thought, emotion.
Ask questions of them, demand answers from them, do not allow them to brush you off. Nobody knows your body better than you do. You must be your own best advocate. So remember, they work for -you-. They are getting paid to help you. If he or she is not doing that, time to find someone else.
I would suggest looking up the "Five Stages of Grief" and reading a lot about it. Yes, it was written, I believe, for people who are diagnosed with terminal illness or for people who have lost a loved one in any manner - but it addresses what we go through on a mental and emotional level, perfectly.
We get so caught up in the physical side of Fibromyalgia that we often times forget that we also need to take care of our mental and emotional health too. They suffer because of this disease, so very much.
Another great thing to read is: The Spoon Theory.
It explains in the most amazing way, what life is like with a chronic illness.
I said that you are at the beginning of a very long road. I was diagnosed three years ago and I truly did not have a clue how much this would change my life. There are a million small ways that one cannot fathom, that are impacted. But, the deal is this: You also learn how precious life is, how meaningful those small things everyone else takes for granted, really are.
You learn how strong you are. You learn to forgive yourself for not being able to do the things you once did. And you even learn to find new ways to have fun, to have a good quality of life. Maybe instead of going out dancing with your loved one, you go to a movie and cuddle in the back row. Things like that. We learn to adjust, to become a new version of ourselves.
Know that you are going to have good days and bad days for the rest of your life. And know that is it OKAY to have those bad days.