I have just returned from a record-breaking (in my history) trip to the emergency room and back, and as with all adventures in life, I learned something.
I experienced first hand the ignorance of the medical world concerning ME/CFS. No wonder it took years to get a diagnosis.
Please understand that making the choice to go to the hospital is a big one for me – with an intolerance for sitting or standing, I could not bear the thought of sitting and waiting for hours on end – as is typical for our emergency rooms. Imagine then, my surprise (and relief) when they took me right in and from the triage examination, rushed me into a bed.
A resident saw me within minutes, and before an hour had passed, I was hooked up to an IV and receiving fluids for dehydration and nausea. Once vitals were confirmed stabilized, they had me on my way – all in under four hours.
The staff was charming, attentive, and I felt, really made an effort to understand what was going on with me, but they just did not know anything about ME, asking me to repeat what it stood for several times and even asking how I got such a diagnosis. They didn’t appear skeptical, just genuinely interested, but considering this disease is more prevalent than breast cancer, it does beg the question: How is it that no one knows?
Living with ME/CFS is an extreme act of faith. The symptoms come and go, fluctuating between mild and severe and seldom amount to anything tangible in medical tests, creating frustration for everyone involved – especially my loved ones who wish so desperately for an end to this disease.
I saw four different cardiologists, for example, when I was trying to find the cause of my rapid heart rate. The first told me I had a rare arrhythmia that I could treat with diet and exercise, the second told me that I did not have a heart problem and basically wasted his time, and the third that I am likely over-sensitive. The fourth decided it was an intolerance for pain medication that was causing the problem, and to some extent, he was correct. I now know that the increase in heart rate is related to orthostatic intolerance. My pulse rate lying down is typically between 84-94 bpm, but increases to 116 or so when sitting, and 137 when standing.
I had a similar experience with continued respiratory problems. In 2006, I seemed to have a cold that would not go away. It was the year I had returned to school, so I wrote it off as a side effect of working with children. Then one day in March, I just could not catch a breath no matter what I did. As I’d had casual bouts of asthma in the past, I was referred to the Asthma Clinic at a local hospital. Testing reconfirmed a number of allergies, both environmental and food related and four years of visits to adjust medication followed. On every visit, my doctor – a lovely man with a warm wit- would wonder aloud if this was really just asthma. Now, I know it was a combination of asthma and ME. Taking medications is not enough to ensure ease in breathing – pacing myself and avoiding over-exertion is key.
Today’s visit was for ongoing abdominal problems. IBS was suggested after a colonoscopy four years ago, but the continued bloating and ongoing pain has become concerning. A blocked bile duct was detected in another test, and an antacid prescribed. Food sensitivities have been noted and I have adjusted my diet accordingly, but the difficulties persist. “It’s likely just a virus,” they told me yesterday. And, in part, they are probably right, but there is such a persistent, underlying wrongness to how my abdomen functions that I am not satisfied we have gotten to the bottom of this problem. Apart from two forkfuls of rice and a couple of gluten-free crackers, I have had no solid (or liquid) food in five days – the pain that follows is too intense. There is no quality of life when the pleasure of a decent meal cannot even be savoured.
Living with chronic illness is discovering that much of medicine is still in the formative stages – uncertainty punctuated with educated guesses – so much yet to be learned. And, if you’ll indulge this me this moment of feeling sorry for myself, I am a discontented guinea pig.