Tonight's picture was taken in February of 2009. Mattie was home between treatments and as you can see was camped out playing on the floor. This was Mattie's vanilla frosted dunkin donut phase. He had the donut in his left hand and was playing with his right. Mattie was the ultimate multitasker! During Mattie's cancer battle, my friend Susan coined the phrase..... one donut a day and everything will be okay! In our case, a donut was the only thing Mattie craved at that point and frankly whatever he would eat, we supported! Mattie loved playing with water and though he couldn't get in a bathtub anymore because of his physical disabilities and the fact that he had a broviac (a catheter which dangled from Mattie's chest, and was used to deliver all sorts of medicines and IVs), we always brought the water to him!
Quote of the day: There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow. ~ OS Marden
If I did not know I was recovering from the flu, I would swear I have chronic fatigue syndrome. The greatest gift I got when visiting my doctor's office a few weeks ago was that I was given vital information about the flu. I had no idea it can take some people weeks or even months to recover from such a viral take over. The last time I had the flu, I must have been a child. In my mind, it takes 10 days to recover from the flu! I am very wrong about this and luckily my doctor's office clued me in. Perhaps it is the strains of viruses we have now, I have no idea, but getting the flu, can be life altering. I am seeing it first hand.
We live in a fast paced society where we want instantaneous fixes. We want to see the doctor and recover by tomorrow. However, there are some recoverable illnesses which don't have one day fixes, and the flu is just such a culprit. Yesterday was a particularly difficult day in which I did not even have the energy to put clothes on. So I stayed in pajamas all day. I am not happy about my physical condition, but I understand where it is coming from. I can't imagine if I was feeling chronically fatigued and had no explanation for this. Yet according to The National health organizations, more than one million Americans and approximately a quarter of a million people in the UK have Chronic Fatigue Syndrome.
Chronic fatigue syndrome (CFS) is a debilitating and complex
disorder characterized by intense fatigue that is not improved by bed rest and
that may be worsened by physical activity or mental exertion. People with CFS
often function at a substantially lower level of activity than they were
capable of before they became ill. The cause or causes of CFS have not been
identified, and no specific diagnostic tests are available.
As the name chronic fatigue syndrome suggests, fatigue is
one part of this illness. With CFS, however, the fatigue is accompanied by
other symptoms. In addition, the fatigue is not the kind you might feel after a
particularly busy day or week, after a sleepless night, or after a single
stressful event. It's a severe, incapacitating fatigue that isn't improved by
bed rest and that is often worsened by physical activity or mental exertion.
It's an all-encompassing fatigue that can dramatically reduce a person's
activity level and stamina.
People with CFS function at a significantly lower level of
activity than they were capable of before they became ill. The illness results
in a substantial reduction in work-related, personal, social, and educational
activities. The fatigue of CFS is accompanied by characteristic illness
symptoms lasting at least 6 months. These symptoms include:
- increased malaise (extreme exhaustion and sickness) following physical activity or mental exertion
- problems with sleep
- difficulties with memory and concentration
- persistent muscle pain
- joint pain (without redness or swelling)
- headache
- tender lymph nodes in the neck or armpit
- sore throat
The symptoms listed above are the symptoms used to diagnose
CFS. However, many CFS patients and patients in general may experience other
symptoms, including:
- brain fog (feeling like you're in a mental fog)
- difficulty maintaining an upright position, dizziness, balance problems or fainting
- allergies or sensitivities to foods, odors, chemicals, medications, or noise
- irritable bowel
- chills and night sweats
- visual disturbances (sensitivity to light, blurring, eye pain)
- depression or mood problems (irritability, mood swings, anxiety, panic attacks)
I have known several people over the course of my life diagnosed with Chronic Fatigue Syndrome and the scary part about all of this is friends and family usually feel like the symptoms are all in their heads. That either they are lazy or have a mental health issue as the underlying cause. I would have to say if you have personally experienced such fatigue through an illness, then I have a feeling you would be cautious before telling anyone that such symptoms are all in one's head. The unsettling part about Chronic Fatigue Syndrome is many of the symptoms do have a mental health component to them and frankly on any given day dealing with grief, I too could feel overwhelmed from it and have several of the symptoms above. So it is a hard disease to pin point, understand, and diagnose. Yet I have great empathy for individuals living with chronic fatigue and chronic pain. It is life altering, very depressing, and at times it is hard to have hope. The fear is life will always look and feel this bleak. I am not sure why we are forced to endure some experiences or illnesses on this earth, but at the very least, I believe it is crucial to learn from them and to try to help, educate, and support others from the insights we have gained.
I am mentioning Chronic Fatigue Syndrome tonight because it is the reality for many people, a misunderstood (by the public) reality, and if you happen to meet someone who suffers from the illness, think twice before summarily dismissing them and thinking the issues are in their head. My own bout with fatigue from the flu has opened my eyes with regard to those who suffer from it chronically.
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