Tuesday, November 25, 2008

I am actually feeling a little better than I have been. I think Sunday was one of my worst days. Yesterday was ok and today is ok. I sort of want to go work out in the yard but it is so cold. I think if if were warmer I would definitely attempt to do something even if just for a few minutes. Since I am not going to write much today, I thought I would add an e-mail that someone sent me. Its called:

You know you have Chronic Fatigue Syndrome when.....
You know you have CFS when you are cautioned to slow down by your doctor instead of by the police.
CFS is having a choice of two temptations and choosing the one that will get you home earlier.
You know you have CFS when you realize that caution is the only thing you care to exercise.
Don't worry about avoiding temptation. With CFS, it will avoid you.
You know you have CFS when you're sitting in a rocker and you can't get it started.
You know you have CFS when you don't care where your wife goes, just so you don't have to go along.
You know you have CFS when you wake up with that morning-after feeling, and you didn't do anything the night before.
Doctor to patient: "I have good news and bad news -- the good news is that you are not a hypochondriac."
You know you have CFS when you have to sit down to brush your teeth in the morning.
You know you have CFS when you become exhausted from the effort to blow out the candles on your birthday cake.
You know you have CFS when you have to take a nap because chewing your dinner wore you out.
You know you have CFS when you get up to change the TV channel and decide as long as you're up, you might as well go to bed.
You know you have CFS when one of the throw pillows on your bed is a hot-water bottle.
You know you have CFS when everything that works hurts, and what doesn't hurt doesn't work.
You know you have CFS when you reach the toilet, but forgot what you wanted to do.
You know you have CFS when you have to get rid of your dog; he kept trying to drag you to the yard to bury you.
You know you have CFS when Medicare states that you're too sick for their coverage.
You know you have CFS when everyone is happy to give you a ride because they don't want you behind the wheel.
You know you have CFS when a passing funeral procession pauses to see if you need a lift.
You know you have CFS when people are constantly putting a mirror under your nose while you nap to see if you're breathing.

You know you have CFS when at 25, your colleagues that are 15+ years your senior and have kids, manage to do more on the weekends than you.
You know you have CFS when you get the vacuum out because, by golly, today's the day your going to DO SOMETHING, and then you have to lay down and get hubby to put the stupid thing away. Unused.
You know you have CFS when you don't have to buy books anymore. You simply re-read the books you have because you can't remember what you've already read.You know you have CFS when you wear out your pajamas before you do your pantyhose

Sunday, November 23, 2008

Another Bad Day

Today is a very bad day. I usually say I feel like I have been hit by a truck but today I am going to say that I feel like I have been hit by a 3 locomotive train, not that I know what that feels like, and of course I would be dead if I had been hit by one. Anyway I guess I just try to compare it to what I think it would feel like. I am having trouble typing this right now. I would never wish this illness on anyone, yet there are so many people suffering from it. WE NEED A CURE! Although many think it is associated with the muscles, I think it is more of a neurological thing, just because of all the other symptoms that I have too; tingling, numbness, sensitivity to being touched, burning sensation on your skin, etc. I just hope that this big flare up ends soon, I don't know how much more of this I can take, and Thanksgiving is this week and I want to be able to enjoy it with my family. Thanksgiving is my favorite holiday and I love doing all of the cooking. We'll see how that turns out-stay tuned...

Saturday, November 22, 2008

Bad Month

November has always been my worst month with my fibro. I don't know why. You would think it would be the weather but this year it has been unseasonably cold, it feels more like January, so I don't think that the temperature has anything to do with it. The fact that is is always in the month of November, not October or December, but November seems interesting. If I look back at the last few years, when I was working I always missed at least a week of work around mid-November and that's when I had a lot of doctors appointments. Another thing is that I love to go to the Southern Christmas Show every November. For several years in a row I could not go because of my fibro. I was able to go last year with my mom for the first time in years. We made it but we couldn't see the whole show because I had to leave due to pain and fatigue. This year I was able to go again with Jennifer and Payton and it was much better for me. When we got there the stroller was missing from Jennifer's car and I felt so bad for Jennifer because that place gets so crowded and it is so hard to keep up with a two year old. That was on Thursday, yesterday I was miserable. I had the worst headache I have had in a long time, my feet were abnormally swollen again and painful. The diuretic that my doctor prescribed didn't seem to help much with the swelling yesterday. Last night was our Fab Five girls night out and I wouldn't miss that for anything so although I felt terribly bad I went and had a good time with my friends although by 9pm I was ready to go home and lie down. We all left around 10:00 which is early for us but we still got to celebrate Lisa & Beth's Birthdays. I can't say this enough I have the greatest friends in the world and I feel so fortunate to have these very special people in my life. Today I am feeling a little better than yesterday but not much. I will just try to take it easy. I have already had to pee twice since I started writing this. The diuretic that I am taking is so powerful, as soon as you leave the bathroom you have the urge again to pee. I am trying to wait at least 5 minutes between times so I don't have to go every 2 minutes. Well, gotta go again so I guess I will end here for now.

Wednesday, November 19, 2008

Pain Scale - 15

I normally write in this blog at night but I woke up with such pain that I just wanted to document it. On a pain scale of 1-10 I have a 15! Seriously-it is bad. Luckily I have a wonderful husband who will give me massages without complaining. Although it hurts to be touched, the massages actually do help a little. I was so stiff this morning and I couldn't move and John was able to work some of that stiffness out so that I feel a little more mobile although the pain is still there. I'll eat something soon so that I can take my pain meds. I went to the doctor yesterday because my feet and ankles were really swollen. They have never gotten like that before so I thought that maybe it was my blood pressure but it was normal. He also did a chest x-ray to make sure that I didn't have any fluid in my lungs, which came back normal. I know that sometimes FMS can cause swelling but I have never had it like this. The doctor thinks it is one of my medications so he gave me something to take for a couple of days to reduce the swelling and that if it starts happening frequently he may consider changing one of my meds. I have tried a lot of natural things and alternative treatments but the haven't worked on me. I just feel like a walking pharmacy and I hate having to take so many meds but like I have said before, I am still trying to find the right combination for me. I have been taking B-12 and D3 which has helped me a lot. My B-12 was extremely deficient and it will still be a few months until I am at a normal level but at least it is increasing. That has helped some with my energy. The vitamin D I was taking in a higher prescription dose but now they have me at OTC D3 2000 IU /day. Vitamin D is good for everyone and a lot of us seem to be deficient these days but Vitamin D also helps people with pain from chronic illness, arthritis, etc. I do think that it has helped me.
Today I am just going to take it easy so that I can attend to my plans for tomorrow and Friday that I really don't want to miss out on.

Sunday, November 16, 2008

Fibromyalgia for Friends

This is an illustration of the trigger points for FMS.
I am still having a rough time with my FMS so I won't be writing much but I thought I would share some information that one of my Fibro friends, Jennifer, put together to help her friends and family try to understand a little better. Here is what she writes:

If you're having trouble explaining what fibromyalgia is to your friends or family or they're still not getting it, I compiled this information from various sites. These are direct quotes from various articles. I didn't write any of this personally. I sent this to my family and amazingly, they all read it. It really helped them to understand this complex and varying illness.What is Fibromyalgia? Fibromyalgia is a relatively unknown illness, even though it affects between 3 and 6 million Americans every year. Fibromyalgia is a syndrome that causes widespread and chronic pain in your body. This pain is also accompanied by numerous other symptoms and often has a great impact on your freedom and enjoyment of life. Fibromyalgia syndrome seems to attack more women than men, with 80% of sufferers being female. Onset of this syndrome generally occurs during early adulthood or middle age and is characterized by symptoms that wax and wane over periods of time.Symptoms of FibromyalgiaFibromyalgia symptoms are painful and can be debilitating. Fibromyalgia attacks the muscles throughout your body, causing them to ache, burn, and twitch. If you are suffering from the syndrome, you probably feel achy all over, especially in the arms, lower back, shoulders and neck area. Fibromyalgia causes tingling in the fingers and toes, severe fatigue, headaches, and sleep problems. The syndrome is also associated with abdominal pain and gastrointestinal complications. Additionally, many suffers have to deal with anxiety and depression triggered by their fibromyalgia.Chronic muscular pain is just one facet of this syndrome; it runs much deeper than just sore and aching muscles or joints. Just living with gravity and our modern day stress can cause much of the soreness and muscle tension that most people experience. However, when we have the condition of fibromyalgia, or myofascial pain syndrome, all of the stress and tension is intensified ten-fold.The chronic pain can be regional, myofascial pain syndrome (in the connective tissue or muscles) or widespread fibromyalgia with overall aches and pains accompanied by neurological and other problems. The condition can be very severe and has many faces.Most have a sleep disorder called the alpha-EEG anomaly. This means that they don’t get to the deeper levels of sleep and they are constantly interrupted by awakening brain activity. Thus, when they wake up they feel that they didn’t get any rest and the body did not get a chance to recover. This condition creates added stress, which keeps them in the vicious cycle.Temperomandibular Joint Dysfunction Syndrome (TMJ) is connected with the headaches or face pain in 25-30% of FMS patients. Research indicates that as many as 90% of fibromyalgia patients may have jaw and facial tenderness that could produce the same symptoms of TMJ.Irritable Bowel Syndrome (IBS) It’s common for many of these women to have bowel problems, constipation or diarrhea. Frequent abdominal or chest pain is also not uncommon. These symptoms are found in 60% to 70% of fibromyalgia patients, according to the research, in addition to PMS and painful menstrual periods (dysmenorrhea).Other common symptoms include muscle numbness and or tingling sensations; muscle twitching; swollen extremities, dry skin or skin sensitivity, dry eyes and mouth; dizziness and impaired coordination. Often patients experience sensitivity to weather or wind, rain, and changes in temperature. Hormonal fluctuations (premenstrual and menopausal states), depression, anxiety and overexertion can all contribute to symptom flare-ups.There is currently no cure for fibromyalgia and treatments are also limited in their effectiveness. Generally, antidepressants, other neurological medications like anti-convulsants, muscle relaxants and pain medications are used to treat the symptoms of fibromyaligia. However, no treatment has been proven to work for a large group of patients with FM. This lack of effective fibromyalgia treatment is basically due to the minimal knowledge researchers have about the syndrome. No one is completely sure of the causes of the illness and thus no appropriate treatments for fibromyalgia have yet been found.

Thursday, November 13, 2008

Bad Flare Day

This has been quite a week. This latest flare has been pretty bad. Not really what I had in mind for the week. I really wanted to work some in the yard but that has been totally out of the question. The weather here now isn't helping either.

Had a dentist appointment today and then went to lunch with my friend Brenda who so patiently listened to me vent about this and that. She really is the best! Afterward I came home exhausted and in pain. There was a memorial mass for one of my high school friends Dan Sullivan which I decided not to go to. It really killed me but I just couldn't. Afterward some of my high school friends and I were going to go up to Brio, I am assuming they are probably still there-who knows. Dan died in September and I did go to a memorial service back then for him on the same day as our 25th class reunion. Today was really just a memorial mass given in his name. My dad was able to go to pay his respects to the family.

These are the hard decisions I have to make. To go or not to go. I do it all based on how I am feeling at the time, that is why sometimes I will not know until the last minute if I will be able to do something or not and that is why I don't like making plans ahead of time, although I am trying to make plans and stick to them because I do not want this to control my life. I want to lead as much of a normal life as possible. I am trying my hardest.
Anyway- I think more rain tomorrow. I have one appointment tomorrow and then I will take it from there. Maybe I will actually go run an errand or two. We'll see.

Wednesday, November 12, 2008

This Sums it up for Today

Yes- this is what it really feels like.

Tuesday, November 11, 2008

The Spoon Theory

I know this is a long story, but I found it interesting and wanted to share to let you know how special my friends are and how special it is when I get to spend time with you but also why I cannot spend time with you sometimes when I am really feeling bad. btw-I did not write this. *** I am fortunate for having great friends.***
An excellent story for anyone with chronic illness.
The Spoon Theory
My best friend Jenni and I were in the diner talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. Jenni had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick. As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try. At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Jenni, here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices, or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of choice, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all. I rarely see Jenni emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “Jenni, I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared” Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons". After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Jenni, don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.” Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

Monday, November 10, 2008

Same ole same ole

It's another one of those days. I am so fatigued and in so much pain. It feels like a really bad flu X 10. I have tried to stay busy but I keep ending up on the sofa unable to move.
Not much to write today for it has been quite uneventful so I am just going to head on to bed and hope for a better tomorrow.

Sunday, November 9, 2008

Bad Pain Day

Today is a bad pain day for me. I feel like I have been hit by a truck. I guess that is the closest description that I can think of for what I am feeling right now along with the fatigue. There are so many symptoms associated with FMS. I have most of them. Not necessarily all at the same time-would'nt that be a day at the park. I suffer from all of the symptoms listed here plus some, although I really don't think that I have ADD, at least that I know of:) My "fibro fog" is gradually getting worse and I think it is the most noticeable to the people around me. I can't remember things and I completely go blank or lose my train of thought. It is so frustrating to forget such a simple word as "kitchen" and you have to describe it like "you know that room where you do the cooking?" This is all during a conversation and it happens way too often. This can really be embarrassing, especially around people you don't really know that well.

Today we had Jennifer and the family over for a cookout for Jennifer's birthday which was on Friday. It was a great day and so beautiful with the gorgeous color of the leaves and watching them as they fall and crunching on them as you walk. I just love this time of year. Anyway, I really had a nice time for I enjoy spending time with the family, I just wish I hadn't felt so bad today. I would have loved to be able to play with Payton maybe out in the leaves. I picked her up and I saw stars but as she hugged me tight I completely forgot about the pain even just for a few seconds, the joy that I feel with her is all worth it. I am very fortunate to have such a wonderful family. That is so important.

Saturday, November 8, 2008

Lisa's Story

Click on Lisa's Story above to view a video of a husband's plea for Fibromyalgia and Chronic Fatigue Syndrome awareness. People are just recently hearing more about Fibromyalgia but it is not yet understood. Certain doctors will ignore giving this diagnosis because they think it is a mental condition, which it is not. Fibromyalgia is real and it's time for people to start learning about it. There are so many undiagnosed people that are completely frustrated because they don't know what they have or their doctor will not acknowledge it. The average patient has to go through between 4-7 different doctors before actually getting an accurate diagnosis. I am fortunate to have a good doctor now who understands and works with me to help me be as comfortable as I possibly can with my pain. Four years ago I left my doctor of 15 years after he told me it was all in my head. I literally ran out of his office crying. I vowed never to go back to him again and he knew why. Just because he couldn't figure it out and my test results said I was fine. He sent me to a Rheumatologist who diagnosed me with FMS. Even after he recieved this diagnosis, he failed to acknowlege this because he was an "old school" doctor and FMS has just recently become an actual listed diagnosis by the AMA.
This is part of why I am doing this blog, not for sympathy, but for awareness. Especially if you know someone with FMS. Just because you don't look sick doesn't mean you don't feel like total crap.

Friday, November 7, 2008

My Online Support Group

This is my online support group which has been very helpful to me. Knowing that you are not alone is comforting although I do not wish anyone to suffer. I have made a lot of friends through this network and we share stories, treatments, etc. This is not just for patients only. Family and friends can also join as supporters. I also have my Fibro circles on Facebook and care2 which include some friends from WeAreFibro. It is so important to have support especially from people who know exactly what you are going through. I am grateful for all of my friends. I don't know what I would do without them.

Thursday, November 6, 2008

Thursday, November 6

As much as I try, I cannot stop thinking about the pain. It is very intense today so all I can do is think about it. I guess I will try to keep myself busy but the pain will still be there in the back of my mind. I have been trying to be positive and not complain as much to the people around me. Complaining doesn't do anything, so here is where I will vent my frustrations so as not to bother anyone. Although there doesn't seem to be a lot to write about FMS because basically it is the same thing every day except some days are better than others. This is something I am doing for myself. I may not make it here everyday since I just take it one day at a time. I will probably also vent about other issues-I guess this will be like a journal for me of some sort since I really don't keep one. Anyone is welcome to read this and comment although I have tried everything & I have heard it all, I know what is best for my body as I try to find the right solution that works for me. We are all different and we all react differently to different treatments. I am working on mine and getting to my ultimate place of comfort.