Tuesday, December 23, 2008

Happy Holidays

I can't believe Christmas is 2 days away. Luckily I am feeling much better today than I have in a long time.
It has been a terrible last couple of weeks with excruciating pain and fatigue. I went to the doctor and he thought that I might have shingles but I never did develop a rash so I guess it is what it is-part of this mysterious illness that feeds off of me.
I just wanted to say how thankful I am for my wonderful parents who have been there for me always. They try to help me as much as they can. Although they are older, I feel terrible because they are taking care of me instead of me taking care of them. Fortunately my parents are very active and have quite a social life too :) I know that when the time comes and they need me to take care of them, no matter how I feel physically, I will be there for them.
I am also thankful for my wonderful friends, especially Brenda, Lisa, Beth & Robin (The Fab 5 we call ourselves) for they are the greatest in the world. Lisa came to visit last night and I was feeling a little down but she really cheered me up and I think it is because of her that I feel better today. It's like my whole attitude changed and it made me realize that friendship is the greatest gift of all and my friends always have enough friendship to offer me and I always have enough friendship to offer them.
Since I am feeling better, I am going to attempt to cook a traditional Cuban Christmas Eve dinner tomorrow evening for John and my parents. On Christmas day I believe we are going to go over to Jennifer's for Payton's 3rd Christmas.
If I don't return before then I hope that everyone has a wonderful Christmas.

Saturday, December 20, 2008

Managing Fibromyalgia - Improving Relationships

Since I have been feeling horrible lately I am just going to copy an article that I just read that I found interesting. I could have written this article.

Managing Fibromyalgia - Improving Relationships
An Article by: Bruce Campbell PhD

Chronic illness changes relationships, both for the person who is ill and for others as well, creating new strains and frustrations. Sources of frustration for people with CFIDS and fibromyalgia include not feeling understood or accepted, isolation, feeling pressure to do more than is healthy, the unpredictability of symptoms, rejection and abandonment. This article describes seven coping strategies used by people in our self-help course to improve their relationships.
1) Re-Assessing Relationships
People with CFIDS and fibromyalgia often find themselves re-assessing their relationships, making deliberate decisions about who to include in their lives. This re-assessment or "relationship triage" is motivated by two aspects of chronic illness. First, illness imposes limits, which in turn force us to be selective in what we do and who we do it with. Also, illness often makes us feel more vulnerable to those who are demanding or negative. Relationships that are both unrewarding and unnecessary may be eliminated, those that are unrewarding but necessary may be simplified.
I have made my circle of friends much smaller. I have excluded people who I feel I have been having one-sided friendships with. It was difficult to let go, as I once valued their friendships a great deal, but I have decided I need to put myself first, which is a new concept to me.
I try to limit contact with hyperactive people, negative people, skeptical people, and demanding people.
I am learning to stay away from those people who add stress to my life and to spend more time with those who keep me laughing and who understand me.
Some relationships are just too costly for me, and I need to let them go. If the person is causing me a lot of stress, making no attempt to understand my illness or just taking more from the relationship than giving, I can't continue to put my previous energy into it. When the person is family, I've learned to back away as much as I can, but it may not be an option to completely cut them off.
2) Seeking Support
Being ill is difficult. Feeling understood and supportive is a balm to the soul. Students in our groups report seeking out contact with fellow patients and also valuing the support and friendship offered by family and other non-patients.
Fellow Patients
Relations with other patients are immensely helpful, because they give me a sense that I have people in my life who truly understand. This has both lessened the frustrations of relationships and reduced the frustration of being ill.
I have a dear friend who has a different chronic condition but who is someone I can share my day and feelings with. It works wonders for both of us. Getting support from people who are in the same place as you helps.
The most helpful relations with patients have been with people who have significantly recovered. They seem to be the most supportive and understanding. Others are less into self-help strategies or genuine support, more into what is the latest miracle cure.
Support from Others
I have found talking with selective friends to be very therapeutic. It makes life with chronic illness a little easier to take.
At first I knew no other people with CFS. Then I met a lot, but isolated myself from healthy people. Now I've been working on nurturing relationships with both sets. I need people I can talk to about my illness, but I also need to get outside the world of CFS as well.
I am really lucky because I have two really good sources of caring friends. First is my church, especially the Bible study group to which I belong. Second is through the business I started a year ago.
3) Practicing Assertiveness
Illness imposes limits. Assertiveness means setting safe limits for oneself, then communicating them to others.
Setting boundaries and keeping them set are big challenges for me. For years I have had ‘welcome' tattooed on my forehead, as if I were a doormat.
I often use the illness as an excuse with those who would obligate me by asking me to be on boards, give showers, serve in the community, etc. At first it was very hard to say no, because I love a challenge or a party, am capable, and like to be active and involved. I've found that some people need to be reminded several times before they stop asking, but that's OK.
When invited by friends and family members to come over or do this or that, I am honest with myself and decline such invitations if I know I am not up to the certain activity. I just give a simple explanation that ‘it might be too much for me today' or ‘I am not up to doing that at this time' and let it go at that. I have found that telling the truth is so much better on both sides than accepting the invitation out of guilt and suffering with it.
4) Educating Others Selectively
Patients are sometimes successful in educating others about their illness, but most put limits on their efforts.
When I was first ill, I tried to educate everyone about CFIDS. Over time I came to see that some relationships were more central to my life than others. I also concluded that some people might never understand. I still make efforts to educate, but I'm more selective about who I approach and I've accepted that some may never understand.
I try to help others understand my illness, but I don't force it down their throats. I try to talk openly about my illness without always focusing on it. If being open spurs further questions, then I share what I can. But I no longer waste my energy trying to educate everyone.
I'm OK with the fact that some people are very sympathetic, some people try to understand but never really get it, and that others cannot or will not understand or sympathize at all.
5) Doing Your Part
Chronic illness makes life more difficult for others as well. Family members, for example, may experience loss and feel isolated and helpless. Patients report another strategy for improving relationships is to focus on what they can do to make relationships work.
I try to be the best friend, spouse, daughter and sister I can be. I feel more secure and on equal ground when I feel I'm keeping up my side of a relationship. I can't do this with everyone, so I focus on the most healthy, valuable relationships.
I make time for my marriage. I've found that even if I'm too tired for us to do anything, if I just talk with my husband or sit next to him instead of in a separate chair, and pay attention to what he wants to say, then our relationship is much smoother and happier. He in turn is much more thoughtful of my circumstances and my needs.
I have found that identifying my part in mis-communication or a problem is very helpful.
6) Accepting Help
Patients report relations are improved when they ask for help in specific ways or allow others to set boundaries for them. Good communication can reduce fears of abandonment.
People are often thrilled when I ask for help in clear, practical ways. But I feel challenged to say what I really need without laying heavy expectations on people. My husband and children are always asking me ‘Are you sure you are up for it?' when I agree to go places. They are my protectors and it feels good. When my husband senses that I am isolating myself, he suggests doing things with me that are unstressful like ordering pizza and playing card games with him or all of us going out for a movie.
One of my biggest fears was that I would become such a burden that my husband would abandon me. At one point, he almost did. But we took it as a challenge and now communicate much more openly and honestly and have re-committed to each other.
7) Embracing Solitude
Illness often forces patients to spend much more time alone than before. Some patients see illness as providing an opportunity to develop new solitary interests.
I have really found that I enjoy having solitude. I never had time to do the things I loved the most. I was always in the fast lane, and by the time I got to do something I was far too stressed to enjoy it.
I actually enjoy spending a lot of time alone. After many years of activity and socializing, it is great to have time to pursue my intellectual interests. I like the luxury of not having to hurry. I read a lot, do simple household chores, watch TV, and work on my jewelry hobby. It is great to have the pressure to produce lifted from my shoulders.

Thursday, December 11, 2008


Here I am again feeling like crap and I have felt this way for the last few days. I can never figure out why because things happen in conjunction. For example, I lowered my tramadol thinking it wasn't doing anything then I start feeling bad again, but the weather is also rainy and messy and I feel like I have a bad flu. if it weren't for the weather I could say that maybe my tramadol was actually working for me but since the weather affects me, I can't tell which is the cause in this case. It is so frustrating trying to deduce and factor to figure out what works for me. I haven't been using the oil much but when I used it the other day I am pretty sure it helped. My problem is lack of motivation and forgetfulness. I just don't think about using it every day. You would think that with my pain and all that I would do anything but my fatigue makes me lazy and I just lay there putting it off until later. I make it here to the computer on my bathroom rounds. every time I get up to go, I drop in and try to catch up on some e-mail and go back to the sofa. I am so behind on all of my e-mails, I drop in on facebook and care2 as well but can't stay for long. I feel really out of touch. I guess I am.

Thursday, December 4, 2008

Rambling About Anxiety

Well since Tuesday was such a great day I didn't know what Wednesday would bring. It was an ok day-Not as good as Tuesday but totally bearable. I just tried to catch up on things that I haven't been able to do. I did have some swelling in my feet and ankles again but it wasn't that major. I have been feeling a little down and I don't know why. I have nothing to feel down about. I started feeling sorry for myself for no reason. I think that just seeing how hard everything is on everyone now and with the holidays, you can't help but worry about the future.
I might go out with my mom later on but I still don't know. That is the problem with me-I never really can know until the last minute. Some of it is my fibro some is my anxiety. I suffer from anxiety/panic disorder and major depression which I have been treating since I was 19. I have been taking meds for those ever since. I also became an agoraphobic when I first started having panic attacks, for no reason. I could not leave the house, not even get close to the door. Looking back, I can't believe it although I still have a little agoraphobic in me. I feel comfortable and safe inside my own home. I still have panic attacks all of the time but you would never notice it. I have had many attacks in the middle of a conversation or in meetings, etc. but I know what it is and that nothing is going to happen and I just let it pass, no one even notices, unless they can see the thumping palpitations of my heart. I am thankful to a wonderful behavioral therapist named Cheryl for helping me through the agoraphobia and controlling my anxiety. She committed so much of her time to de-sensitizing me to every situation. Every day we would go one step forward. It took several days to desensitize myself into going inside the mall. The first day we drove to the mall (Southpark) and parked in the parking lot. The next day we went into Hecht's (now Macy's), the next day we walked through Hecht's to the entry to the mall, the next day we walked out from Hecht's into the mall, etc., my goal was to make it to the food court in the middle of the mall. We made it and she never pushed me. I would only go as far as I could. Once I had a wedding and a couple of days beforehand she took me to the restaurant where the rehearsal dinner was going to be held and they showed us where we would be sitting and where the restrooms and all exits were. Cheryl did this with a lot of new (post-agoraphobia) situations, it is like I had to re-learn. Churches and movie theaters are the worst for me. I still have problems with those. I can never thank Cheryl enough for being there for me always. She totally changed my life. As for my depression, I need meds for that due to a chemical imbalance. I tried weening off of my meds one time and it was a total disaster. I know I need my meds and I will have to take them for the rest of my life. If it weren't for my meds, I probably wouldn't be here today. Although I want to treat all of my other ailments with alternative treatments, I know I will always need my prescribed meds for my depression. People with FMS also suffer from anxiety and depression or as in my case, vice versa.
I did not mean to go all into that but I guess it helps to always express yourself and your feelings, under the right conditions, of course:)

Wednesday, December 3, 2008

It's Been a While

I know it has been a while since my last post but I have had a terrible time with my FM. I have only started gradually feeling better within the last couple of days, that is when I can say that I am a survivor because I make it through the tough times and then everything is ok. I don't know how long this good spell will last but with FM you'll take what you can get.
Thanksgiving is my favorite holiday and I love to do all of the cooking. This year I had to ask for help from John. I was physically not able to do it all. It is hard to ask for help when it is something you want to do but sometimes we have no choice. I have to say that on that day I felt for the first time in my life "disabled" or "handicapped" which probably makes no sense to anyone but me. The day was nice with the family and the food and I enjoyed it as much as I could.
A couple of weeks ago when I went to the Christmas show, there was a lady selling some oils for relief of all kinds of ailments. She used to have FM and had an oil that she makes herself and says she no longer needs medications. I am not a sucker but when you feel what I feel you will try anything. The bottle was an expensive $18-stupid right? Anyway I started using it the other night. You are supposed to put it where your pain is and then on the soles of your feet. I am not saying this oil did anything, but I have been feeling better ever since and I have been using it daily. It could just be a coincidence, but I'll take it. Yesterday I actually went out in the yard for a while and did a few things and put a couple of outdoor decorations out. Little by little-we'll see.
Last week I also reduced my pain medication by half because I didn't feel like it was doing anything and I feel no difference since then so apparently it wasn't doing anything. I didn't use the oil yesterday- I don't think it is a miracle cure- I know my mind can influence a lot of things- I am just glad that today I can say that I am a Survivor!

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.