Happy Holidays!

Happy holidays everyone!  This year I decided to send out a holiday card (actually e-mail) to my friends and family with a bit of a chronic fatigue syndrome flare.  Check it out: 

Dear Family and Friends,

Happy Holidays!  This year, I have watched the holiday cards flood into our mailbox with smiling faces and kind greetings.  In the spirit of the season, I wanted to make a holiday card of my own, but with a bit of a twist.  This year has been anything but typical for me and I feel the need to update the people I love about it.  If this were any other year, you might be getting a holiday card from my family (emphasis on might because sometimes they just don’t happen) sharing my accomplishments like making the honor roll or taking a great vacation.  Unfortunately, this year my accomplishments have been of a very different kind.  They have included things like finding a medication to stop me from fainting several times a day and getting strong enough to stop using a wheelchair.  Perhaps I should start from the beginning.

It all began in my freshman year of high school, a time of transition and major stress. Suddenly, my body was overcome with a heavy malaise and my muscles were constantly strained. Told by my doctors that the teenage years were a time when the body experiences "major changes", I thought little of it. However, not long after the onset of the fatigue, I began getting sick more frequently than normal.  In the beginning, I was diagnosed with Hashimoto's thyroiditis, a hypo-thyroid disorder, when it was discovered that my thyroid was profoundly enlarged. I thought that this diagnosis and treatment would represent the end to my suffering and was hopeful that my energy would return soon. Unfortunately, that was not the case.

Fast forward to present day, I now know that I suffer from chronic fatigue syndrome and fibromyalgia. I have experienced many ups and downs in my symptoms over the years, which vary from fatigued but functional, to bedridden. I have been fortunate to have reprieves long enough to allow me to attend college and live away from home. Unfortunately, I am currently in my senior year, but have had to take a medical leave for the semester due to a major flare up.

While I do plan to return to college this upcoming semester, chronic fatigue syndrome and fibromyalgia are chronic conditions that I will have to contend with for the rest of my life.  While my symptoms can be somewhat managed, there is always a threat that I will have another flare up like I did this year that will leave me unable to function and take care of myself.  However, there is some hope.  On October 8, 2009, a report was printed in the journal Science citing a possibility that chronic fatigue syndrome is caused by a HIV-like retrovirus called XMRV. Motivated by this discovery, scientists are working diligently to devise better treatments for people with my condition.

I have decided that I can no longer sit around and wait for a cure to come along for me.  I want to be part of the solution.  For five months I have been homebound.  I have felt hopeless, helpless, and my faith has been tested.  Knowing that there is a test available that might explain why I have suffered the way I have provides me with a glimmer of hope; but the fact that there is no treatment leaves me in a bad place.

This holiday it is my wish to raise money for the Whittemore Peterson Institute for Neuro Immune Disease, the facility that discovered XMRV and is driving research and treatment efforts.  I know that the economy is horrible and that everyone just had to shop for the holidays, but like many social issues of our day, beyond generating awareness, the only way to fuel action is through donations.  Up to 10 million U.S. citizens could already be infected by XMRV and our blood supply is contaminated. 

Below is a button that you can press to donate through PayPal using your credit card. Thank you so much for all of your support.  Have a wonderful holiday season and a happy new year.

Happy Holidays,

Marah


Like I did with my family and friends, I challenge you to make a donation!  Press the button below...

An Invisible Illness

With the cold weather kicking in, I have been spending a lot of time curled up with good books to keep me company.  This morning, I finished a wonderfully, heart-warming memoir entitled Look Me in the Eye by John Elder Robison.  The book details Robison’s life with Asberger’s and the trials and tribulations he faces as he makes his way through the world.  Towards the end of the book Robison discusses how his disability is received, noting that his condition is often misunderstood due to its invisible nature:

“A person with an obvious disability – for example, someone in a wheelchair – is treated compassionately because his handicapped is obvious.  No one turns to a guy in a wheelchair and says, ‘Quick! Let’s run across the street!’  And when he can’t run across the street, no one says, ‘What’s his problem?’  They offer to help him across the street’ (Elder 2008).

While I do not have Asberger’s, Robison’s comment resonates with me because my illness is not visible to the outside world either.  In some ways, I am grateful for this invisibility as I do not face the judgment and prejudices that many people with physical handicaps are subject too.  I also get to choose who I tell about my disability and don’t have to wear it around. However, the invisibility also presents a lot of room for misunderstanding. I often fear that missing school, having to cancel plans and miss events, and sleeping a lot more that the average might make me appear lazy or unreliable. In addition, many people don’t understand the extent of my illness because it is hard for them to believe that someone could be that sick when they look fine.  Recently, I lost about 15 lbs. due to stomach issues and people often compliment me on how great I look when really it is because I wasn’t digesting my food properly and was in severe pain.  The truth is I’d rather be fatter and feel better!

The other issue with “looking fine” is that it is up to me to ask for help because it is not offered.  I am a proud person and I have a hard time accepting my limitations. I hate feeling dependent on other people and don’t like being taken care of.  While sometimes I’d like to pretend that I am normal and embrace the invisibility, I know that I am better off when I swallow my pride and allow people to help me.  In the past I have ended up making my self sicker by pushing myself too hard when I should have asked for help.

In many of these articles a theme I keep returning to is control. I often feel resentful that I lack control over my symptoms and the limitations they impose on my life.  However, I have to find control in other areas.  When it comes to the invisibility factor of chronic fatigue syndrome and fibromyalgia, I do have control over how I make my invisible illness visible and to what extent.  Writing this blog is a big way that I choose to make my illness visible. In a way this blog is a kind of “coming out” for me that allows me to take ownership of my illness and find the positive in the lessons I have learned from living with my disability.  In the end, it’s all about balance.  I don’t want to hide my illness but I don’t want it to define me either.  By finding outlets like this blog and asking for help once in awhile, I hope to make my illness visible in a way that does not place a burden on others and helps me to be better understood.

Some questions to consider:

How do you tell people about your illness?

How do you cope with your limitations?

How do you ask for help?

Vote for MCWPA's Ad Campaign for the Washington Post

As a CFS and FM patient who has struggled for years for answers within the medical community, I am always on the lookout for ways to support research and raise awareness of these illnesses.  Recently, the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient group, has been working on an ad campaign to run in the Washington Post.  The goal of the ad campaign is to encourage reporters to do a story the will delve further into the experience of CFS patients and generate awareness within the general population.  For years patients have not received the care they deserve due to lack of funding for research and a lack of public awareness about this problem.  MCWPA is sending the message that addressing the needs of patients is the responsibility of society, not just the patients themselves. 

Get involved!  MCWPA has designed 4 different ads and is allowing the public to decide which one will run in the Washington Post.  Cast your vote at http://mcwpa.org/2010/11/ads-ready-for-final-vote/.  Voting ends on Monday, November 29 at midnight EST.

That's So Cliché...

The other day I was feeling a bit desperate which led me to write a list of motivational words to cheer myself up.  As it turns out, it did the trick so I thought I’d share it with all of you:

Be patient.

Things will get better.

Time heals all wounds.

All is not lost.

Family and friends aren’t going anywhere.

Seek gradual improvements.

Be good to yourself.

Breathe.

Find comfort in small things.

Listen to your body.

Get a second wind (or third or fourth…).

Start small and grow.

You are not your illness.

Strategize, make plans, set goals.

Stay in the present.

Don’t compare yourself to others.

Never give up.

Stop feeling guilty.

Stop judging yourself.

Love yourself.

Give yourself some credit.

Be proud of your accomplishments.

Pamper yourself.

Nurture yourself.

Learn to let go.

Don’t sweat the small stuff.

Be appreciative.

Rise to the occasion.

Conquer your fears.

Relax.

What Goes Down, Must Come Back Up

Lately, I’ve been doing a lot of reflection on my life and its most recent events.  Looking back, this has been a year of great loss.  I have lost many of my abilities due to my health issues, and as a result, I have lost my sense of confidence and direction in life.  At the beginning of this year, I was dealing with chronic fatigue syndrome and fibromyalgia but it was very manageable and did not stop me from being in school, having a boyfriend, and keeping up with my friends.  Now, I am at home where I only have one friend, have been dumped, and have the hobbies and activity level of someone in their 70’s rather than someone in their 20’s.  I sleep the majority of the day, knit, and have even taken up watching Jeopardy and Wheel of Fortune every night with my parents.  In addition, I have had two very traumatic trips to the hospital due to fainting spells.  I’m hoping to go back to school for next semester but nothing with me is ever certain.  So where do I go from here?

Well, what I’ve concluded is that the only direction is up.  I have been thoroughly cast scanned and MRIed (yes, these are verbs in my book) and it has been concluded by several members of the medical community that I am not dying.  This fact alone eliminates any further surprises.  Other than that, I know for certain that my friends (though they may be long distance) and my family aren’t going anywhere.  While I don’t do much every day and I don’t have much of a direction, I’ve learned to believe this is only temporary.  And as far as my health is concerned, I have a new doctor and am going to defer to his suggestions.  All I can do in the meantime is focus on minimizing my anxiety and stress level.  I can’t predict the future and trying to only leads to fear. 

I guess what I’m really trying to say is that I need to live in the present and take each day as it comes.  When I feel sad, I will let myself feel sad.  When I feel tired, I will sleep.  And when I am in pain, well … they actually make pills for that!  And while at times this seems like a pretty pointless existence, it is only a temporary state. Though gradual, I do see improvements in my health and I know from past experience that my illnesses tend to peak and plateau.  If nothing else, I am living to see this thing through and find out what the future holds.  I do believe that there must be some purpose to all this suffering and that whatever/whoever is out there (g-d or whatever you believe in) isn’t just being cruel and making an example out of me for no reason.  I might hold the key to some answers or at least be able to guide someone else through a similar experience someday, who knows?

Questions to Consider:

What keeps you sane?

How do you deal with times when you are homebound?

How do you confront loss?

Elimination Diet

About 4 years ago, I began to experience very troubling acid reflux.  Taking the traditional route I saw a GI doctor and had an endoscopy.  The test came back showing mild irritation so I was tried on several different proton pump inhibitors but got no relief.  The only thing that seemed to help was TUMS, which I began taking several times a day.  About 2 years later I started seeing a new doctor who put me on Aciphex, a proton pump inhibitor I had not tried before, and told me that I had a large list of food allergies (corn, cow’s milk, tomatoes, yeast, and all red, blue, and purple fruits).  I felt some relief but not completely so I continued with the TUMS and continued to deal with the discomfort as best I could. 

My symptoms were manageable until March of this year when I went to the emergency room with stomach pain so severe that I thought my appendix was bursting.  I was evaluated and sent home with a week’s worth of pain medication.  I was told to follow up with a GI doctor if my symptoms did not resolve by then.  After a week spent hugging my heating pad, I was out of pain medication and left with serious discomfort so off to a new GI for another endoscopy as well as a colonoscopy.  Both came back negative so I was given a diagnosis of IBS, the diagnosis you get when you have lower GI issues with no visible explanation.  I was put on every anti-spasmodic medication available but they did nothing.

As a result of this negative experience, I began seeing a chronic fatigue and fibromyalgia specialist who told me that the allergy test I had been give 2 years earlier was a scam and that I had avoided the list of foods for nothing.  At this point, I decided to take matters into my own hands.  I believed that if there were no visible abnormalities in my esophagus, stomach, colon, or intestines, then my problem must stem from what I put in my body.  Based on my own research and discussion with the new doctor, I decided to try an elimination diet. I went on Amazon.com and settled on the book “Dealing with Food Allergies” by Janice Vickerstaff Joneja (to look into it further or buy one for yourself, the link is available in "My Favorite Things" section). 

The diet begins with 10 days of the “few-foods elimination diet” which includes a small (emphasis on small) list of food that do not cause allergies in the majority of the population.  This was not easy.  By the end of the 10 days I would sit and watch people eat because I was feeling so deprived.  The next phase of the diet is called the “challenge phase” in which food groups are reintroduced sequentially.  I am still working on this phase but so far I have discovered that I have sensitivity to egg yolks, uncooked tomatoes, cauliflower, and sugar in large amounts.  I have still not reintroduced dairy, wheat, yeast, and alcohol (except for vodka in honor of my 21^st birthday). 

The results?  The feelings of starvation and deprivation were totally worth it.  I am not completely symptom-free but my upper and lower GI issues are the most controlled they have been since they began.  If anyone out there is struggling with chronic fatigue syndrome or fibromyalgia and GI issues I would definitely recommend looking into food allergies and trying an elimination diet. 

Tricks and Treats!

Ok everyone, I know this title is a bit cheesy but it’s just about Halloween so I decided to have a little fun.  The following is a list of tricks and treats I’ve discovered for making living with a chronic illness a bit more tolerable:

Tricks:

Pacing and Routine: To avoid overdoing it on your good days and subsequently crashing, try to establish a routine (with flexibility) that keeps you going at an even pace.  Work on establishing a steady wake up time and bedtime so that your body follows a natural rhythm.  Know your peak hours of the day and schedule activities for then.  Also, realize your limitations and allow yourself to take naps when needed.

Don’t feel guilty: This is a hard one but try not to beat yourself up about having to cancel plans, takes naps, or take days off of work, school, etc.  You didn’t choose to have a chronic illness but you do have a choice whether or not you are going to make your self feel guilty about it. 

Listen to your body: Be in tune with your abilities and needs.  When you feel you are able to push a bit, go for it.  When you need a break, take it.

Keep prescriptions up-to-date: Many pharmacies have online applications that help save on time and allow you to see when your next refills are available.  I use walgreens.com. 

Have an arsenal of over the counter medications on hand: These things include pain relievers (Tylenol, Ibupropen, Aleve etc.), stomach soothing agents (TUMS and Pepto Bismol are my personal favorites), allergy medications (for me that means Benadryl for allergic reactions and Zyrtec for seasonal allergies), and cold medications (I have found that the winning combination is Sudafed during the day and Nyquil at night).  The last thing you want to do when you feel sick is have to run to the pharmacy or have to deal with getting someone to do it for you. 

Treats:

Take a warm bath:

Pour in 2 cups of Epsom salt (aka: magnesium sulfate) which helps to draw toxins from the body, sedate the nervous system, and relax muscles

Light a candle (scentless if you have sensitivities)

Sit back and relax!

Use a heated should wrap: I bought mine at Whole Foods (link is "My Favorite Things" section) and it is my new best friend.  I place it in the microwave for 2 minutes (might vary with different microwaves) and use it to soothe neck and shoulder pain.  Also, I sometimes just place it on my stomach for a warm relaxing feeling.  The fact that it doesn’t plug in means you don’t have to worry about falling asleep with it.

Wear slippers: I don’t know what it is about slippers but they are super comfy and help to regulate my body temperature, which is constantly all over the place.

 

Drink herbal tea: Sipping on something warm with potential benefits of antioxidants, relaxation, or weight loss (depending on the type) always seems to make my day a little better. 

Keep good movies and reading material on hand: On bad days a hilarious movie always perks me up or a good book helps take me to another world. 

After writing this list I think that all people, chronically ill or not, could benefit from these ideas. 

Question to consider:

What tricks or treats would you add to the list? 

The Question of XMRV

Lately there has been a lot of discussion in the media about new research on chronic fatigue syndrome given the new discovery of the XMRV retrovirus last October.  Having suffered from the illness for 7 years and feeling like managing my symptoms has become increasingly difficult, I have been following these studies with great interest and hope.  I have always felt as though every doctor I’ve seen (who believes in my condition) only has the capability to treat my long list of individual symptoms rather than their underlying cause.  And with what result?  Medications, medication, and more medications – all with potential interactions and side effects.  It is a nightmare. 

With each new treatment I have to ask myself a series of questions: Is this medication working to treat the symptoms it is designed to?  Is this medication producing sides effects or interacting with other medications?  If so, are these new symptoms worse than the original symptoms or better? If they are better, how will they affect me long term (aka will they create a larger problem that will need to be treated with a new medication).  Long story short, it is constant trial and error and a lot of headaches.

Therefore, when I heard that there was a possibility that chronic fatigue syndrome could be explained by a retrovirus – a legitimate underlying cause – I was hopeful, yet cautious.  As a Sociology student I like to find any excuse to incorporate the topic of chronic fatigue syndrome into my schoolwork so I conducted a research project on the condition’s portrayal in the media since its discovery. Using the keyword function in the Lexis-Nexis Academic database I searched for all articles containing the phrase “chronic fatigue syndrome” and selected 43 articles from international news sources dating from 1987-2010.

Here’s what I discovered: In all 43 articles that I read, each one posited a possible theory for chronic fatigue syndrome, a total of 15 different theories on underlying reasons for the illness (including traditional and alternative medicine).  Furthermore, each theory claimed to be a step closer towards finding a cure.  So the question remains: is XMRV different?  Is this the one we’ve been waiting for?  In my opinion, it is too soon to tell.  However, that does not discredit the wonderful advocacy and awareness that has been generated by the finding of XMRV.  This new research has helped to unite the chronic fatigue community and started to legitimize the illness to the public.

As far as how to proceed with treatment and making the decision of whether or not to get tested is a personal question that we all need to answer for ourselves.  Last week I began seeing a new chronic fatigue specialist and asked his view.  In his opinion, the drugs currently being used to treat XMRV (which are drugs that have been proven to treat HIV) are very toxic to the body so users need to monitor their liver function etc.  HIV sufferers have no choice but to use these drugs to prevent AIDS and death, however, chronic fatigue patients will not die from their condition.  In addition, he believes that the research surrounding the retrovirus is insufficient and is not pleased with the precedent being set by people using these drugs.

Before this doctor’s visit I was planning on being tested.  For me it would represent some peace of mind that my illness is quantifiable.  However, now I have rethought that position.  If my test did come back positive for XMRV I would not feel comfortable trying to find clinical trials in this early phase of research.  Therefore, it is my decision to wait and continue following the progress of his research.  I am hopeful that in my lifetime a cure will be found for this horrible illness and society will finally recognize the struggle of chronic fatigue sufferers.  In the meantime, I am going to stick to the medications that work and try a few more.  I am not looking for a magic pill because at this point I don’t think it’s out there (at least for me).  My ultimate goal is improved management of my symptoms and getting over my most recent flare so that I can get back to school and finish college. 

Some questions to consider:

What is your opinion of the XMRV research?

Has anyone been tested?

Is anyone being treated for XMRV?  What is your experience?

Having a Social Life

Living at home and sometimes going weeks without leaving the house, my illness can be very socially isolating.  While this isolation is experienced as a literal physical separation, it is also a feeling of being out of sync with the rest of the world.  I don’t move at the same pace as those around me and it often feels that the primary concerns I face differ as well.  How do I overcome this feeling?  Foremost, I have come to realize that while isolation is a physical state, it is also a mental state.  When I am feeling particularly down and fatigued I feel more isolated, but the reality is that during those times I have not actually lost friends.  Rather, I have lost my motivation for being around people or I am feeling misunderstood and different.  For a short time I think it is ok to indulge in that feeling and give myself some space to feel bad about having a chronic illness and facing unique challenges.  The rest of the time, I need to get over myself and acknowledge that life could be much worse and that I do have friends who genuinely care about me and empathize with me although they don’t face chronic illnesses themselves.

I have also learned that trying to hide my illness for fear of being treated differently is a mistake.  Back in high school I had an experience where I told a friend about my illness and they started treating me differently.  All of our conversations revolved around my issues and me because he felt the need to shield me from his personal problems, which he believed paled in comparison to mine.  This experience really scarred me and has made me extremely cautious about whom I confide in and when.  Over time, I have come to realize the more often than not, people have been accepting of my illness and it hasn’t made them treat me differently.  I used to spend so much energy fearing being judged that I tried to act like I wasn’t having a hard time with my illness when I really was.  With that approach I cheated myself out of getting support that could have brought my friends and I closer and made it more bearable to be at college, a difficult environment for people with my condition.

With my most recent downfall, I have lost my ability to be selective about whom I tell because I am out of school.  What I have discovered is that people have responded positively to me and made an effort to reach out to me.  If people are going to treat me differently because of my illness then they are not people I want as friends.  I don’t like it but my illness is part of me and for someone to be my friend they need to accept the whole package.  I will not be ashamed of my condition; it is not my choice.  If anything, I want to be surrounded by people who see my strengths and value me for the accomplishments I have made and will make despite my challenges.

Some questions to consider:

How do you cope with feelings of isolation?

How do your friends help you with your struggle?

Has a friend ever treated you differently as a result of chronic fatigue syndrome and/or fibromyalgia?

Rock Bottom

Last night my worst fear was realized when I was taken to the emergency room in an ambulance after a particularly scary looking fainting episode.  The emergency room doctor admitted that given the time of night and the lack of specialists around, the most he could do was run a number of tests to ease my fear of what just happened.  He tested my blood and urine, gave me a cat scan, and performed a lumbar puncture to evaluate my spinal fluid.  Not surprisingly, everything came back negative.  
 
That is when I had a major epiphany: I am not dying.  Ok, this sounds really obvious due to everything we know about chronic fatigue and fibromyalgia, but let me explain. 

I finally came to the realization that chronic fatigue syndrome and fibromyalgia are not going to be what kills me but I had been living my life as if they were.  I was resisting going out because I was scared of getting dizzy and fainting.  And now, here I was sitting in a hospital bed, the place I had been doing my best to avoid.  Confronting that fear, I came to realize that this is the worst it can get: a bunch of negative test results.  I am not going to let this fear get in my way anymore.  I am going to go out with my wheelchair and live my life. 

Some questions to consider: 

How do you confront the fears associated with having a chronic illness?

**As a side note, I had a meeting with a new doctor last week that has some good ideas on how to control my postural tachycardia and fainting.  I’m hopeful that there are options out there to make my symptoms more manageable.

Who's in Control?

Due to the nature of chronic fatigue and fibromyalgia, I often feel as though my body controls me rather than the other way around. Often times, my days seem to be decided for me in advance. Will I wake up? Will I be capable of focusing on an activity? Will I be able to leave the house? It is difficult to identify the separation between the illness and me. While most of the time I’d like to think it is only one part of me, there are times where it seems to take over my entire being – worming its way into my goals, values, and personality. So the question is: how do I strike a balance between making choices to guide my life and relenting to the decisions of the illness? Logically, it is easy to see that being at war with an already taxed body is not good, but sometimes this is easier said than done.

Essentially, it is a question of acceptance. I don’t have to like what is happening to me but I can’t be angry about it all the time either. This issue is on the forefront of my mind right now because of my recent decline due to a reactivation of Epstein-Barr virus. Before this downfall I felt as though my life was rather limited, but for the most part I was able to accept those limitations and adjust my life accordingly to feel fulfilled. It was as if I was living in a box with clearly marked boundaries. In that box I knew what was too much to push me over the edge but I also knew the places where I could push myself a bit. Then one day, my box shrunk. Now I am faced with a new slew of sacrifices and limitations that I have to learn.

On one hand, it is a lesson in being grateful – as the old saying goes, you don’t know what you have until it’s gone. On the other hand, it is now time to face a new set of fears and disappointments. I’ve been through this process time and time again, with each new symptom, infection, or virus: feel worse, lose confidence, adjust to new condition, and build myself back up. With each pitfall, the disappointment is equally strong but the process of building myself back up again does seem to get a bit easier. The supports I need are all in place; it’s now a matter of harnessing what seems like my last bit of strength to work through the emotional trauma.

Some questions to consider:

How do you support yourself and cope with limitations?

What makes you feel in control of your situation?

Where do you find strength?

Life is What Happens When You're Busy Making Other Plans

 

It all began in my freshman year of high school, a time of transition and major stress. Suddenly, my body was overcome with a heavy malaise and my muscles were constantly strained. Told by my doctors that the teenage years were a time when the body experiences "major changes", I thought little of it. However, not long after the onset of the fatigue, I began getting sick more frequently than normal. Each time I came down with a virus or a sore throat I did not register a temperature and was told by the doctor to let it run its course. In the beginning, I was diagnosed with Hashimoto's thyroiditis, a hypo-thyroid disorder, when it was discovered that my thyroid was profoundly enlarged. I thought that this diagnosis and treatment would represent the end to my suffering and was hopeful that my energy would return soon. Unfortunately, that was not the case.

During my sophomore year of high school, I took a two month sick leave and flew to the Mayo Clinic in Minnesota where the thyroid disorder was confirmed and I was diagnosed with postural tachycardia syndrome (POTS), delayed sleep phase syndrome, and “severe de-conditioning”. There was one mention of a little known disorder called chronic fatigue syndrome or fibromyalgia (seen as interchangeable by the doctor) but I paid it little thought as I was told no one knew about it and that there was no treatment. In the end, I was prescribed a rigorous reconditioning program (aka heavy exercise), given a list of ways to cure insomnia, and sent home. I went home and began working with a personal trainer (which I now recognize aggravated my condition), saw a psychiatrist and therapist, and corrected my sleep schedule. All the while, I continued to plummet downhill with the onset of new, more troubling symptoms, and missed about 30 to 40 days of school each year. I, nor the growing list of doctors that I consulted, recognized my symptoms with any particular disorder. I felt my body was shutting down and sometimes feared that what I was experiencing was fatal.

Fast forward to present day, I now know that I suffer from chronic fatigue syndrome and fibromyalgia. I have experienced many ups and downs in my symptoms over the years which vary from fatigued but functional to bedridden. I have been fortunate to have reprieves long enough to allow me to attend college and live away from home. Unfortunately, I am currently in my senior year, but have had to take a medical leave for the semester due to a reactivation of Epstein-Barr virus. Living at home and confronting this most recent downfall, I have decided to start this blog, CFS/FM: A Day in the Life, to encourage dialogue about coping with chronic fatigue syndrome and fibromyalgia. I have chosen to share my story in the hopes that it gives me some credibility to speak on the subject and make informed assumptions regarding the issues shared by those who identify with these illnesses. I am not looking for pity and recognize that there are many people out there with situations worse than mine.

I am open to discussing my symptoms and physical experience further but am more interested in discussing the psychological and social effects of these illnesses. Constantly making sacrifices, facing social isolation, and at times feeling scared for my safety due to certain symptoms, chronic fatigue and fibromyalgia have had a significant impact on my self-esteem, confidence, and sense of purpose. Along the way I have developed many coping strategies that have been helpful and that I hope may be of value to readers. In addition, I want to hear from readers about your experiences and techniques for living with these illnesses or being a friend or family member of someone with these illnesses. Each entry will contain a specific topic that I will discuss in addition to questions for readers to respond to. Thanks in advance for your interest!