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!