Today's word is FMily. It means the group of people with whom you share Fibro, comraderie, stories, angst, pain, relief and to whom you generally look to for support. This is today's word because of this group and because of my friend Mick. (It was going to be stress but I figured I'd be more positive today.)
FMily is what we call those people who know exactly what we're going through. It's kind of like a recovering alcoholic liking AA because those are people who know what it's like to crave a drink, or cancer survivors seeking other survivors because only they know what chemo feels like. It takes a certain level of understanding in someone to truly be able to talk to them without feeling like you're whining when you start talking about your pain or your limits.
FMily is that person who says, "You know, when my flares get like that, this is what works for me." Or can say, "Yeah, I hate it when trying to get through to the word I want is like looking through fog (or behind a glass wall, or a black hole)." And who knows exactly what it means when you say "Well, that's it, I'm done. I've run out of energy for the day" whether it's at 11 am or 8 pm.
FMily is incredibly important. I didn't realize that until I found some. It wasn't until I found a group of people online who were within 10 or so years of my age and going through the same thing that I realized just how important it was to be able to have someone in my life who could say "yeah, I know exactly what you mean."
Oh supportive friends and family are all well and good but they don't get it. Not really. What they get is frustrated when you've cancelled another outing, put off a dinner date, not done the dishes - or the laundry, or the vaccuming, or a shower. They get stressed which, in turn, makes you stressed and makes you hurt more. Did you know that the divorce rate for people with FMS is higher than with those couples without it?
FMily has your back. And they always will. The thing I like about it best is that even people you don't know will always know what you're going through and be there for you.
Who is in your FMily? Do you appreciate them like you should? Are they helpful? Do you help them? What do you like best about the FMily in your life?
- Mood:
crazy
The problem for people with FMS is that it is a constant signal. It always says "don't do that! Stop doing that!" So what on Earth are we supposed to do?
There are many ways to find pain relief; and some of them work for some people, while others scoff and say "yeah, well, THIS is what works for me!" There's massage, acupuncture, aqua therapy, yoga, walking, hot baths, hot tubs (there is a difference! ;-) ), heating pads, topical gels, TENS units... the list goes on and on. There are also fourteen hundred different drugs out there to help too. Ok, maybe not actually that many but it sure seems that way! And again, some help some people and others help other people.
But sometimes none of that helps at all. It was along these lines that a friend of mine and I have been talking over the last couple months. He's been in a severe flare for what's going on forever now, the poor guy, and I entered one a couple weeks ago. He said:
"yeah i find the hot baths can help sometimes, (as long as your skin isn't feeling too sensitive/sore tho) i run the water a little hotter than is comfortable, then sit on the edge of the bath wi my feet in the water and as the heat sensation tells me to take my feet out because its too hot, i don't i just concentrate on that heat and nothing else and it seems to overwhelm the pain sensation, then my body adjusts to cope with the heat and i can immerse myself in the water.
I mentioned this as a coping strategy to my doc and he warned me to be careful as he said practicing such coping methods is borderline self harm, but i said it is a different issue as you are flooding your pain receptors with a different type of pain impulse, rather than inducing pain to subdue emotional issues, so it is more like trading down. "
Anyway, do any of you do this? Do you find other ways to...well, inflict pain to ease the all over pain? Do you do anything that focuses the "everywhere pain" down into one spot? Sometimes for me it's as simple as getting Jeremy (the fiance) to do some trigger point work. Massive pain in that but it certainly brings the brain into one spot instead of sending pain signals from everywhere. I used to be a cutter of a sort - to help ease the emotional trauma from the events that triggered the chronic pain - but I'm not anymore because it just doesn't help. I heal WAY too slowly, for one, and scar WAY too easily for another. Besides, that was emotional pain and I'm talking about physical pain. Took me years to stop doing that but I managed. (I didn't cut, I did other things - burning, hitting things until I came close to breaking my hands, deliberate "accidents")
When the drugs just don't work, what do you do? I try everything else - walking, stretching, heating pads, topical pain creams when I have them - before I resort to the pain focus thing, but sometimes I just know nothing else will help. And so I have to ask the people around me, or more specifically, the only one I trust, to do something for me. Like Trigger Point work or pressure points or... something. Anything. Having relief from the all over pain for even just a few moments sometimes makes everything that much more bearable.
Reminds me, it's time to wake him up so that I can get him to do that for me. When he's alert enough ;-)
So share your techniques for end-of-the-rope pain relief.
- Mood:
frustrated - Music:Three Doors Down, Seventeen Days
I've taken two advil migraine and I have a lidocaine patch over the TrP but it's only marginal relief so far. I honestly have no idea what to say today but I think posting daily is important and that I should discipline myself to do it.
Maybe today's word should be Discipline. And no, I don't mean "Oh you naughty boy!" (read that however you like lol)
It's kind of the same as responsibility though. What do you have to discipline yourself to do every day? Get out of bed? Get dressed? Eat? Exercise?
What helps you maintain the level of commitment required to do these things each day? Who helps you? Who holds you back?
I need to go, the meds aren't working and the migraine is reaching nauseating porportions. Have as pain free a day as you can manage. Toodles.
- Mood: cranky
Everyone from my 7 y/o daughter to my 84 y/o grandmother has responsibilities. For Callie, the daughter, they involve homework, her chores, personal hygiene and keeping herself out of trouble. My grandmother's are somewhat different - mostly all she has left is to look after herself as best she can.
Which brings me to the kind of responsibility I'm talking about - personal responsibility.
Personal responsibility means doing what we have to do to be safe, sane and healthy. Exercising, taking showers, brushing our teeth, taking our medications, sticking to a routine. Routine is very important to minimizing pain in people with FMS.
It means going to sleep at the same time, getting up at the same time, eating around the same times, taking meds at the same time.
It brings me to those people who should but don't do these things. Is it up to those of us who love them to make them do it? Is that forcing them to acknowledge their own responsibility for themselves or is it taking it away from them?
Responsibility for me has always been my kids first, then my marriage (while it lasted), everyone else then me. Perhaps if I'd put me first more often things would be different. Not putting myself first now means that my kids don't live full time with me (in fact, at the moment they're 3000 miles away), it means that I'm divorced, it means that I live with multiple chronic pain conditions - permanent chronic pain conditions.
Because I didn't take the time to know precisely what I was dealing with when I first started learning how to take care of myself with FMS - and this was after 2 years of eating my way through depression - I now live with Myofascial Pain Syndrome (or Chronic Myofascial Pain, whatever, it's the same thing).
I thought I was doing well; I got a gym membership, found someone who knew something about FMS and set about getting myself into shape. I worked out 3 or 4 times a week with cardio, strength training and LOTS of stretching. I even went to a yoga class. Turns out I was doing some serious harm to myself with the strength training. I ended up with the third chronic pain thing - myofascial troubles.
The second chronic pain issue actually came before the FMS diagnosis - I have degenerative disc disease. My sciatic joint is deteriorating. I don't know how a deteriorating joint translates into disc disease but apparently it does.
So where does learning to take care of yourself become a slow but sure road to self destruction? When you don't know enough about what you're doing.
Responsibility means finding the things that work for you plus things that work for FMS. It means making sure that YOU look after YOU. Yes, part of that means relying on other people to do something for you.
It means making sure that you have your meds, your support system, everything you need to be healthy.
Oh sure,, you can say "But Jenn, I have kids" or "I have a job" or "I have a husband/wife" and I say yes, and looking after yourself first means you can do a better job looking after them. Think about your flares, how well do you look after everyone else when you can't move without wanting to cry in pain? How well can you look after them when your depression is so great you can't see past walls of despair? Sometimes everyone has their own personal Wailing Wall I think.
Personal Responsibility around here means my fiance taking his blood sugar 5 times a day, making sure he doesn't eat too much junk food (he's a junk-aholic like me), making sure he gets the proper sleep and exercise.
It means me making sure I have a daily routine - writing, eating, sleeping, stretching and walking. It means making sure that I don't have to deal with a lot of stress. It means making sure I have ways of taking care of my more manic moments; the moments of anxiety, the moments of over-stimulation that make me want to scream at everyone to "shut the #$%# up!" and leave me alone. It means making sure that I'm taking the proper meds, or at least doing the best I can with that since I'm so far away from my doctors.
Responsibility overall means the two of us working on our relationship. We're both difficult people to live with (he's ADD on top of being diabetic and I'm very eccentric and get anxious if my routines are broken) and we have to work hard on managing it. Our relationship is easier than some people would think, because we understand each other, but the demands that we sometimes cannot help but make on each other can be straining. We have a great deal of love and that helps a lot.
It also means looking after one another when we aren't capable of doing it for ourselves; it means him prodding my faulty memory to make sure I've done what I'm supposed to, it means me making sure he takes his shots and cuts out the sugar and carb laden crap. It means both of us making sure that we are moving like we're supposed to be. Hard to do when we both feel like crap some days but we manage. Not as often as we should to be sure.
What is responsibility for you? How do you manage to balance what you have to do for yourself to keep functioning with what you have to do to keep your world around you from collapsing? What does your personal responsibility involve? Do you do it like you should? What could you improve?
I have to run, toodles!
- Mood:
indescribable
July 24, 07
Today's word is "Acceptance." and the inspiration comes from
a young woman who filled out my questionnaire. She said, "I have learnt to accept the FMS, I know it is a condition I have, but I do find it very difficult accepting the impact it has on my life." She works 3 jobs and seems, despite everything, fairly positive about her life.
How many of use can say the same? How many of us have accepted the FMS? How many have accepted it but not the limitations? Why are there varying degrees of acceptance, does it mean that we haven't accepted it at all if we can accept the condition but not the conditions it places on us? Acceptance is defined as: the experience of a situation without the intent to change the situation. Can we accept FMS but push our limits and still call it acceptance?
I think this young woman is courageous and very strong and deserves more than life has handed her. I think we are all a lot stronger than people give us credit for. The mere acceptance of our lot in life proves it. Kudos to her and to you, for seeking to improve
your life, for constantly seeking peace, for always being there for others and always loving, no matter how the pain ravages your heart and mind.
July 25, 07
(Today's photo is a piece of work by Paula Scaletta, found on allposter.com)
Today's word is "Faith." What does faith mean to you? Does it mean going to Church every Sunday? Fasting for the Sabbath? Does it mean
belief that Jesus will save you if you only
go to him and confess?
Or does it mean believing in someone absolutely? Having 'faith' that they will be there for you? Does it mean believing in yourself?
I have faith in very few people - most of those in my Coven, my Fiance, my kids, my Mum and, oddly, my ex-husband (which is
a new thing). A lot of people have faith in me. They know, absolutely, that I will be there for them and help them in any way I can.
But the ones who should have faith in me - my father for instance - would prefer to believe harsher things of me because, mostly, of the choices FMS has forced me
to make.
So here's the thought for the day: Who has faith in you? How has this faith changed since your diagnosis?
I love that my kids have faith in me. Their absolute confidence that I will be there for them, no matter how I feel, makes me smile the broadest.
July 26, 07
Family is what I'm thinking about today.
No matter your background, culture, or language, everyone has a family. Most people view family as the people you share a genetic connection with. But these days there are so many different kinds of family it's really hard to put that kind of label on it. My family consists of Grandparents, Aunts & Uncles (more than 2 dozen), a huge host of cousins, 6 siblings, my ex-husband, my fiance and, most importantly, my children. Two, boy & a girl, 11 & 7 respectively.
My ex's family is Roman Catholic and my
kids are being brought up in the church.
(I'm Pagan and they are learning both ways of seeing the world) The RC Church defines "family" as a mother and father and their children. My children are having a hard time accepting that their family unit has changed to: Mummy and Daddy live in separate houses and they each now have someone else who loves them.
There are families with two Daddies, or two Mommies, or only one of each. So why do
we continue to define Family as the traditional unit? My Family is much larger than that. My family no longer includes my father and stepmother, as they make every effort not to include me as their family, but still includes his mother, brothers and sister and my brother (the only one I share both parents with). It includes my 5 half-brothers and sisters, their children and our Mother.
More than that though, my Family consists
of the people I love most - Jeremy (my fiance), Ben & Callie (my kids), Cindy, Amy, Tee, Jess, JT, Kevin, Cindy's girls Bri & Tori, Christie & her daughter Ash & and the soon-to-be-born baby, Davy & his kids and, finally, a young man named Nick.
These are people who mean a great deal to me, who all hold pieces of my heart. I can count on them when times are tough, I'm there for them when they need me, I know they're good for a laugh or a cry, to celebrate or rage with me. Isn't that what family is really about?
And there is one other kind of family - the FMily. The large network of people with
FMS who understand exactly what I am
going through because they live it too. They can be counted on to rage and celebrate and commiserate and lift up. And they are just
as important as anyone else.
Think about your family. How big is it really?
June 27, 07 (this is Houdini in chains)
Today we are going to talk about Limits. And because
of those limits, it's going to
be short.
I very recently started
playing catch with my fiance. It's fun, we both enjoy it a great deal and it gets us both to be more active. I like playing baseball, but I can't. High impact sports are a no-no. But I can play 500-up and catch.
I can pitch to my kids, but can't chase the ball. Anyway, yesterday we discovered a new limit and a new choice. I can either
play baseball, in my fashion, OR drive. I can't do both. It took me two percocets last night to get to sleep and I'll be taking another one soon today in order to get through the day.
Limits SUCK. Everyone has them. It just seems far more pronounced in Fibromites.
I like to push mine, to a degree (like playing catch until my shoulders ache) just to see what I CAN do. What are your limits? Which ones can you push? What choices do you have to make to get through each day?
July 29, 07
Yeah, so I didn't write yesterday, my apologies. And today I'm trying very hard to find something to talk about. I'm still not sure what it is, the only thing on my mind is pain.
Maybe that can translate to "Love." Does that seem like a leap to you? It's not, I assure you.
Love, as they say in the Matrix, is merely a word that implies connections. And those connections are different for everyone, wouldn't you agree?
Ultimately, love implies unconditional acceptance. Unconditional means pain and all. It includes when our lovers turn into caregivers, as mine had to last night. (And probably should this morning.) Once again I pushed my limits too far, this time playing catch with my ex. We had fun doing it and did it until I dropped. *smiles* We were seeing who would drop first - a farce since it's always me - and when he saw I was determined not to go lightly, he gave in and said he was done. It was a nice gesture and born from a history of love.
My back started to sieze up the moment I sat down. My fiance and I had to go home. Jeremy had to help me undress, help me wash and then spend quite some time massaging me and putting up with the smell of Icy Hot. This morning I probably will need help with my shower, but he's asleep and I'm not going to wake him.
That's part of my side of the love equation. I don't ask him to do everything I need him to do. Maybe some find that silly, like those who don't need a lot of things done for them, but I know that there are those out there who just sighed and said, "Yeah, I know what
you mean."
Love is a word that implies connections. What are those connections to you? To me, love is the many tiny threads that bind my fiance and I heart and soul. In the larger meaning of the word, one that encompasses my family, love as a connection is a desire to be with one another, a need to be near each other and the compulsion to look after one another, no matter what that takes.
July 31, 07 It's been a couple of days due to a serious lack of motivation and a struggle to not be negative.
I finally decided that the word of the day will be Support.
Support could be a piling, a bra, a helping hand. ;-) I'm talking about help. People who are there for you to help you when you have the energy to complete a task (like the dishes) but can't do it all yourself. People who are there when you can't do a damn thing no matter how much you want to. The person who brushes your hair because you can't. The people you can talk to who understand simply because they've been there.
Who is your support? Do you have a spouse who has minimal problem with taking up the slack? Do you have a friend, or a sibling or a parent who will run your errands? Who do you talk to? Me, I have my Coven and my Fiance and a few very good friends. Friends who ask how I'm feeling, try to distract me when the pain is too great, who understand when I say "I simply can't sit here anymore."
The flip side of having this support is guilt. Guilt because someone else is looking after your children. Guilt because your spouse, who's worked all day, has to come home and make dinner because you can't stand there long enough. Guilt because you told someone you'd do something with/for them and you have to postpone, or worse, cancel.
Or how about the guilt because you resent having people around? People like your children or your spouse because they disturb whatever little peace you've managed to achieve that day, or because they demand your time and energy. Or the guilt because they're there to help and all you want to do is tell them to get lost.
And there's the idea that no one else can possibly understand that you feel all this guilt, resentment and anger. Well, I'm here to tell you that I understand. I know how you feel, I know you're not alone and I pray that I'm not.
My support tells me that it's ok to feel this way and if I really need to be alone, they'll leave me be. The really good ones want to do the dishes, make sure I have enough sleep, the right foods to eat, a massage when I need it and the wherewithall to go for a walk when I need to. And for that I love them no end and try to make sure they know it. What does your support do for you? And do they know how much you appreciate them? Tell them. Show them. Love them, for they love you and they show it with every stroke of the brush, every errand, every dish washed or shirt folded.
Sept 17, 07 Finally! I start again! It's been a long journey to get here.
Today's word, in case you haven't guessed, is Security. Writing about it because it's been on my mind for a little while.
I have had a self-destructive streak a mile wide since I was a kid. I'm like a cutter, but I don't cut. I find other ways to hurt myself. I am pretty sure that most people don't understand how causing oneself physical pain can ease emotional pain. So let me tell you (and then, yes, I will tell you how it relates to security).
Emotional pain is an inward thing, very hard to see, sometimes very hard to handle. When you cut yourself (or burn, or punch things until you bleed or whatever) you are turning the pain outwards and creating a focus. Something that can be looked at, treated, dealt with. Heartbreak and depression are very hard to deal with, no?
The problem with cutting or other forms of destructive self-mutilation is that it's a temp fix and does nothing to solve the problems. And it's usually done without any real conscious thought.
So how does this relate to security? Security is about more than locks on the doors and passwords on the computer. It's a feeling, it's about knowing that you can make yourself feel safe. For me that involved routines and a ritual or two, (like long sleeves, long pants, socks, a blanket and the TV remote). Rituals and routines I had to give up to come here. I'm still trying to find new ones.
I've left my kids with their dad, as some of you may know. I can't take care of them, not the way they need, and he can. And now I'm some 3,000 miles away from them. They're fine and I was dealing with it (sort of) up until the other day when my son said "Mummy, I want you to come home."
Cutting through all the emotional stuff, I hurt myself. I didn't realize I was causing damage, I was just doing something that made me feel better. But now I have a couple of long scratches on my leg that are infected and I don't feel better, I feel worse because I now feel like an asshole for creating such damage. And it doesn't help me miss my kids any less.
So the question for you all today is: What do you have in place that makes you feel secure? What makes you feel better when you're hurting so bad you can't stand it (emotionally or physically)? Think about it, think about what would happen if you lost it and be grateful you still have it.
I meanwhile, will look harder for a new ritual that will help prevent this abberation in my behaviour (it's been THREE years) in the future. Right now, I can say that most of my security lies in the arms of my Fiance and the love of my friends.
Sept 18, 07 (this pic is from Northhampton, UK, Mental Health website) Today's word is Anxiety. A natural follow up, I think, to yesterday's word. Anxiety is that feeling that something's wrong, something you can't define and a feeling that won't go away. It makes u s feel less secure.
All of us have ways of dealing with this. Sometimes we have to take meds. Sometimes not. Ack! I have completely lost my train of thought... I'm going to see if I can pick it up again...distractions are a pain in the arse...So is fibrofog.
No, it's gone. Let's see...Anxiety can leave us in more pain than before the episode started. It creates unnecessary stress. So what can we do about it? First is to decide whether there is an actuall source of stress, I think. Then if there isn't, find ways to ease our minds. I know, I know, that's not always easy with anxiety disorders but it needs to be done. Recognize, then deal.
How do I deal with anxiety? Sometimes all I can do is ride it out. Most of the time the idea is to make sure that I am as safe as possible. If the anxiety is that something is wrong with someone, then I casually find ways of making sure they're alright. Other times I simply use distraction. What do you do? Do you recognize anxiety for what it is? Do you know the difference between necessary worry and unrealistic feelings? How do you figure it out? How much is anxiety a part of your life?
Tomorrow's word, while I'm thinking about it, will be Responsibility. That's a good word too.
I never did get to Responsibility - perhaps I will tomorrow. Feel free to post feedback on any of the thoughts here.
And now, I must get on with the day that is half gone. Toodles!
- Mood: crazy
Here goes:
FMS is not a form of arthritis. It was commonly believed that FMS loosely fit the definitions of arthritis, namely that its many problems stemmed from an inflammation of the joints.
FMS does not affect the joints, muscles or connective tissues (the myofascia), although it definitely feels like it does! No matter what it feels like, there is no damage to those parts of the body.
FMS is not an autoimmune disease. There was a belief that FMS stemmed from an overactive immune system. An autoimmune disease means that the body’s immune system begins attacking its own cells. That is not the case in Fibromyalgia.
Fibromyalgia Syndrome affects children, men and women of all ages. It used to be believed that it pretty well affected only middle-aged or older women, with few exceptions.
And finally, FMS is most definitely NOT a psychological problem. It is very, very real. There are many doctors who still do not accept this as a real problem and will tell patients it’s all in their heads. Counseling and/or drug therapy for depression or psychosis will not make the symptoms disappear.
Now, what is Fibromyalgia Syndrome? Why is it so hard to diagnose? Well, let’s start with the second question first.
FMS is hard to diagnose because the symptoms appear to be random, hard to pinpoint and mimic so many other things – like multiple forms of arthritis, MS, Chronic Fatigue Syndrome and a few others. Most of the symptoms are not consistent and there are many other co-existing problems with FMS that make it hard to distinguish in itself.
Diagnosis comes when patients are informed about their own symptoms, do their research and are proactive in their care. It comes when doctors, or other health care workers involved in the patient’s care, know about FMS. It comes when doctors and others are willing to look outside the box. Sometimes though doctors already know what’s wrong and decide not to tell their patients because, “there’s nothing you can do about it anyway.”
That’s where they’re wrong.
Diagnosing FMS involves three things; one, ruling out other things, two, taking into account the patient’s history and, three, testing for tender points.
Tender points are eighteen spots on the body, in all four quadrants, that cause significant pain when pressed, but do not cause pain elsewhere. (Pressure must be hard enough to whiten the thumbnail.) There must be eleven tender points present for a positive diagnosis of Fibromyalgia Syndrome to be made.
Most often, your general practitioner, or family doctor, depending on where you live, will send you to a rheumatologist if he thinks you have FMS. The rheumy will rule out other things and either confirm or deny the GP’s suspicions. Once the diagnosis is made, they will most likely begin to find a daily care routine.
So, I still haven’t answered the question “what is FMS?” We have gone all around it, talked about what it isn’t and how to diagnose it. Now let’s talk about what it is.
First and foremost, Fibromyalgia is a neurological disorder. Recent studies have shown that patients with FMS consistently have several biological abnormalities. These abnormalities are centered on our brains and several hormone deficiencies.
They include:
• decreased blood flow to several areas of the brain that may explain the pain sensitivity and cognitive problems. In particular, the thalamus region. The thalamus is the part of our brain that translates signals and relays them to the appropriate parts of our bodies and brains. It controls most of our senses like taste; hearing; touch – pressure, temperature and even the movement and placement of our muscles, joints and facial expressions and our visual systems. It also controls our gastrointestinal tract and other internal organs. It also regulates sleep and wakefulness.
• High levels of something called “substance P,” which is a nervous system neurotransmitter involved in pain processing. Substance P is what they call a neuropeptide, a short acting neurotransmitter. It regulates moods, anxiety, the creation of new neurons, the strength of our responses, respiratory rhythm, nausea (and whether or not we vomit), the creation of new nerve cells and pain. A dysfunction of this neuropeptide throws all of that stuff out of whack.
• Low levels of the nerve growth factor. This factor is vital for the survival and maintenance of sympathetic and sensory neurons. Sensory neurons translate external stimuli, telling us what we should feel. It is part of what makes Fibromites (people with FMS) so sensitive to pain and temperature, makes us over react to it.
• Low levels of the hormone that promotes bone and muscle growth, Somatomedin C. Somatomedin C is a growth hormone made by the pituitary gland. It’s released at various times in the day, but usually in deep sleep. The decrease in this hormone can cause decreased bone density, fatigue and reduced exercise tolerance. It can also cause adverse lipid changes, which may leave us at high risk for cholesterol related problems.
• FMS also leaves us with low levels of serotonin, norepinephrine, dopamine and cortisol. These are neurochemicals that, collectively, aid in translating everything our bodies do and feel. They are the conductors of the electrical signals from our nerves to our brains. Each chemical has its own function, to get into them would take up a lot of time.
• Also creating problems are low levels of phosphocreatine and adenosine. These are muscle-cell chemicals that regulate the amount of calcium in the muscle. They ‘push back’ the calcium created with a muscle contraction and allow it to relax. If the calcium is not pushed back it remains in a contracted state – in other words, a muscle spasm.
These are all the major myths about FMS, debunked. It is not all in your head, there are viable, viewable symptoms and changes caused by Fibromyalgia. FMS is painful and debilitating. It is accompanied by stress, depression and a loss of self-worth. FMS is confusing, heartbreaking and exhausting.
It is inexplicable and frustrating. It is an unknown few people believe exists.
It is for life.
My name is Jennifer and I am a Fibromite. I was diagnosed at the beginning of my twenties, soon after my son was born. I have lived with chronic pain since I was a child. I am the mother of two children, divorced and in a new relationship. Fibromyalgia was the underlying cause of my divorce. The new relationship is strained at times because of the FMS.
I have lost the ability to do many things over the last decade and have had to learn to live with the feeling that my children are being neglected by me.
My ability to think and comprehend things has gone to the toilet. The only way I can think logically now is to write it down. I have a form of OCD (Obsessive Compulsive Disorder) that requires me to have routines that I follow almost to the minute on a daily basis. I freak out if my routines are broken. By ‘freak out’ I mean I get angry, stressed out and generally fall into a funk until my routines are restored.
I have two other chronic pain disorders and a host of co-existing conditions along with the FMS. I am unable to work outside the home, indeed there are days I am unable to leave my home.
I sometimes require help with housework, with getting dressed or undressed, even with personal hygiene. I cannot always wash my hair by myself. If I can get it washed, some days I cannot get it brushed.
I take pills to help me sleep, pills to help me function and yet, I do not take as many pills as some people with FMS. One of the meds I take is for Parkinson’s disease because it’s the only thing that helps that symptom group.
And yet, I’m a fairly positive person. I write, and I write very well. I have a large fan base, despite only having one book published. I am well loved by my friends and most of my family. Those in my family who refuse to have anything to do with me do so for the simple reason that they do not understand FMS and all its complications.
I like to help people, indeed it’s almost a compulsion. That’s why I wrote my first book, Living Full and Gluten Free: A restaurant guide with a full menu. I wrote it for my mother, who has Celiac Disease, and for my little brother, who also has Celiac Disease. He was diagnosed at the age of nine. I wanted them to be able to find safe foods when they are not at home, for everyone deserves a meal out once in a while.
And I am writing this book because despite all the books out there that talk about FMS, there is not one book that I can find that tells it from the patient’s – no, the Survivor’s point of view.
This book is to help you know that you are not alone. That you can feel what you feel and not be ashamed of it; that feeling that you’re being selfish and lazy because your spouse, who has worked all day, has to come home and do the dishes you couldn’t do; that guilt that you cannot carry your fifteen month old baby because at twenty pounds she is too heavy or that frustration with people who say “But you look perfectly fine!” when you have to cancel dinner yet again because your pain levels are too high and you know you just can’t do it are all perfectly normal and acceptable.
All of those feelings are part of being in this FMily we’re going to talk about them. We’ll talk about guilt and grief and denial and acceptance.
This is the story of my life as a Fibromite and the stories of others in the FMily. FMily is the group of people who have Fibromyalgia, the only group of people who truly understand what you’re going through. They are the ones you can turn to with your questions, the ones whose shoulders you can cry on and the ones who will get it when you say “Man the fibrofog is thick today! I can’t see a thing!”
I hope you find the book eases your mind. I hope you encourage your family to read it and that it helps them cope too. Here’s to days full of joy and less pain.
That's the intro to the book. Does a pretty good job of explaining FMS if I do say so myself. Now for the definitions:
Anxiety: That feeling you have, and can't shake, that something is wrong. A feeling that leaves you panicky and, sometimes, breathless and sweaty with the need to make it - whatever it is - go away or stop. It's defined as uneasiness or distress usually caused by fear of an event. With anxiety disorders the fear is unrealized or unfathomable, usually without cause.
Autoimmune Disease - An autoimmune disease is one in which the immune system is over active and attacks the bodies own cells. Examples include Lupus and rheumatoid arthritis.
CFIDS - Chronic Fatigue Immune Dysfunction Syndrome. It is generally characterized by a general feeling of unwell, unrefreshing sleep, impairment of concentration and short term memory, muscle pain, joint pain without redness or swelling, tender neck and armpit lymph nodes and sore throat. They will consider a positive diagnosis based on the fatigue and unwell feeling lasting for more than 6 months and the other symptoms for more than 3.
CFS - Essentially the same as CFIDS.
Chronic - Continuing for a long time, constant or recurring frequently.
Fibrofog - A term used by people with FMS to describe the lack of cognative abilities - like loss of short term memory and inability to concentrate.
Fibromite - A person with FMS
Fibrositis - The old name for FMS, before it was discovered that FMS is not an inflammatory disease.
FMily - All the people with FMS who support one another.
FMS - Fibromyalgia Syndrome, a debilitating chronic pain condition.
IBD - Irritable Bowel Disease. A collective name referring to diseases like Crohn's, Ulcertative Colitis and, sometimes, Celiac disease. These are autoimmune, inflammatory bowel conditions.
IBS - Irritable Bowle Syndrome. This is a condition of a spastic colon, NOT an inflammatory disease.
Insomnia - The inability to get enough sleep. Sometimes characterized by not being able to get to sleep, sometimes by continuous waking in the night. There are several forms of insomnia.
Limits - What they say you can and can not do. I think limits are a challenge, a goal to exceed.
Limitations - Those boundaries we can absolutely not step beyond without hurting ourselves.
Meds - Short for medications.
MS - Multiple Sclerosis. Some FMS symptoms mimic MS.
Myofascia - The connective tissue covering the muscles that narrows down to become the joint tendons.
Neuron - A specializing cell in the nervous system that conducts impules.
Neurotransmitter - One of several chemical substances that transmits impulses from a synapse (the space between nerve and the next thing) to another element like a nerve, muscle or gland.
Nonarticular - As in "nonarticular pain." It means FMS involves soft tissues (like muscles) rather than joints.
OCD - Obsessive Compulsive Disorder. When, for instance, someone obsessively, compulsively cleans. Or, like with me, HAS to have daily routines to follow, almost to the minute.
Pain - How does one define pain? It's that impulse nerves send to your brain saying "DANGER!!" But with FMS those impulses are on super-sensitive and always on alert.
Paresthesias - A new word for me. It means "abnormal touch sensations such as burning or prickling without an outside stimulus." In otherwords, the creepy crawly feeling that sometimes happens even though there's nothing touching you.
Radiated Pain - Pain that spreads out from a central spot, whether or not the central position has any immediate pain. An example is the pain caused by Trigger Points.
Rheumatologist (Rheumy) - A doctor who deals with arthritic conditions.
Serotonin - A chemical messenger in our brains that affects emotions, behaviour and thoughts. A chemical Fibromites are sadly lacking.
Survivor - A person living with FMS and living well.
Tender Points - The points that identify FMS for doctors. They are hypersensitive points in the myofascia that hurt like a son of a bitch when pressed. Usually in pairs in set points on the body.
Trigger Points - Knots in the myofascia that radiate pain, often debilitating (this I know from personal experience), to other parts of the body. They can occur anywhere myofascia is present. For instance we suspect I have one in the myofascia around my gall bladder.
And these words because I think they’re important (and are words I will probably expand on on the Inspiration page):
Acceptance - Defined as "the experience of a situation without the intention to change that situation." I believe acceptance is also loving unconditionally the person that is you, all of you, pain included.
Determination - The drive to achieve or do something. I think determination describes those of us who are willing to push our limits even as we keep our limitations in mind.
Faith - Faith is most often defined with a connection to a church, a belief in a higher Power. To me, Faith is simply about believing in something, or someone, absolutely.
Family - Most often defined as those with whom you share genetics. But family is more than that, it's a group of people who accept you, love you, support you and have faith in you.
Inspiration - Inspiration is that thing that gives you the determination to do something; that thing that sparks a lightbulb over your head; the thing that makes you smile and feel positive about yourself or your task.
Love - Love is a chemical reaction to something, can be induced by chocolate. Right? Sure, but then why do we love in different ways? With different passions? Love is the total unconditional acceptance of someone.
Spirituality - This is not, to me, a belief in God (however you view Her), but a simple belief in a Higher Power. It is the openness of mind that allows the energies of the planet and people to flow through you. "A devotion to metaphysical matters, as opposed to worldly things."
Support - Something or someone to lean on. Friends, family, doctors. Support is a form of stability, of knowing absolutely that there is someone to pick up the slack, or just cheer you up when you need it.
Ok, this post is way long, my apologies but there's all the info I promised. Now on to the Daily Thoughts.
- Mood:
bouncy
Let's see if I can remember what I said...
Nope. Oh wow this is an intelligent start.
I've decided to start this journal here to promote and gather info for my latest non-fiction project: A Fibro Tale: One woman's life with FMS Sometimes I think it's a bit egomaniacal to think anyone would want to read my story but I have had excellent and positive feedback so far. The book will include other people's stories and statistics too.
I have an original page for the book but what I can do with it is very limited . I have discovered that people want to respond to what I've put there, especially in the daily thoughts. And I like feedback, even criticism. Funny coming from a writer maybe, but I think I do better with it. I have a Myspace blog where I post bits of most of my writing, fiction especially, and when I need feedback.
Here on Livejournal I will be posting the daily inspiration page. I think I will make a post that includes all the ones on there so far and just continue from there in future posts. I will do my level best to make it daily, I'm usually here in the mornings.
So nice to meet you all, my name is Jenn and I'll be here for the forseeable future. The next post will be about FMS, and then the Daily Inspirations. Tomorrow, the new ones will start.
Just a warning, I have a bit of a warped brain and therefore somewhat of a twisted yet subtle sense of humour. You'll either love it or hate it. *grins*
- Mood:
thoughtful
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