The room is completely dark, even after I take off the washcloth and tanning goggles shielding my eyes from encroaching light. When Ryan Prior interviewed me for Forgotten Plague, the documentary he co-directed about MECFS, the body I had worked so hard to obtain was slowly wasting away, but little did I know at the time how much it would deteriorate. Gone now are the muscles I spent thousands of hours accumulating and sculpting.
When Ryan asked me about my regression from fitness trainer and bodybuilder I lived in a 300 sq. ft. studio by the beach, now I’m confined to a mattress in a small mountain town in rural California.
It’s afternoon, about two o’clock, and I just woke up for the second time today. The first time was at six so I could be hooked up to a saline and vitamin IV.
This seemingly rudimentary IV cocktail has proved to be quite effective for my recovery. It is almost hard to believe. In fact, for some it is hard to believe. Recently a family member, a physician’s assistant educated at Stanford, told me I didn’t need saline and that the benefit is all in my head. “Just drink water,” she said.
I sent her this lovely bit of research from Erica Verrillo’s Chronic Fatigue Syndrome: A Treatment Guide.
“In the November 1, 2006 issue of the Lyndonville News, Dr. Bell unequivocally states that IV saline is ‘the most effective treatment for severe ME/CFS that I have found in my 21 years of looking.’ To be most effective, a liter of saline should be administered over the course of an hour or two.”
But this is by no means the only ignorance about my situation. A doctor recently asked my mom what I do in bed all day. “Does he watch TV?” The doctor asked.
I thought to myself, “Yeah Doc, it’s a blast, I watch Family Guy and Seinfeld reruns all day. No, come on man, I live in a dark cave. Caves don’t have TVs.”
This same doctor prescribed my saline infusions. And as I understand it through my haphazard research, for me, saline is about fluid retention and flushing toxins from my kidneys. And drinking water just doesn’t do the trick.
Saline has by far been the most beneficial treatment during the 18 months I’ve now been bedridden. That’s 18 months horizontal in a dark room having the world’s longest staring contest with the ceiling—no breaks, no “I’m just gonna go outside to grab some fresh air.”
For months, orthostatic intolerance and extreme muscle weakness, among other things, have riddled my body leaving me unable to lift my head, stretch my limbs, or produce any sound more audible than clicking my tongue.
Now, however, with daily saline infusions I can sit at a 45 degree angle and speak polysyllabic words, sometimes even short sentences. And people can actually hear me. It’s wonderful. To go from mute to audible is an invigorating and albeit humbling experience.
Don’t get me wrong, my life still sucks. It’s anything but peachy and I’m a pretty optimistic guy, but I’ve found that hope and love always trump desperation and despair. Luckily I have hope and love through my friends, family and the MECFS community. And in this single moment in time that’s all I need.
* An earlier version of this post was featured on the Blue Ribbon Foundation’s blog in July 2016.
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14 thoughts on “A Dispatch From Bed”
I’ve been getting weekly IV fluids for a year with subcutaneous immunoglobulin and I recently posted that maybe it wasn’t the IgG infusions that were helping me, after all, but the fluids. I was mostly joking, but you’ve made be think about it seriously. They don’t improve my very low BP, though, and they leave me puffy… But, overall, I’ve gone up this year, so, whatever it is, I’ll take it. So happy to hear you’ve gained a little bit of ground.
Oh wow! Interesting. I can’t even begin to say why it’s helped me, but it had. My BP went from 95/62 to 121/71. I’ll take it. Keep me posted if you will. Thanks for your comment.
That’s fantastic! I’ve heard the same thing as what your family member said–that any help from IV fluids is very short-lived–which is why I had credited the immunoglobulin for my improvements, but who knows? I hope you get more firsts this year. Hang in there.
Thanks. Even my (former) doctor made a point of adamantly telling me the IV treatment is temporary. I would hope all treatments are temporary. But why stop what helps, right?
Hi Elizabeth! : ) Can you tell me more about your treatment with IV fluids and subcutaneous immunoglobulin? I was finally diagnosed with Fibromyalgia a couple years ago and have been to several Rheumatologists. I came across a book on Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) which was a light bulb moment “My God this describes me!!”. There is so much confusion about our disease– there must be half a dozen names? I’ve been to various other medical specialists to rule out any other disorders… Anyway, I’ve decided to use my limited energy to research options, treatments, solutions, etc. and would greatly appreciate any information you can share! For example, how did you get a doctor to order your IV fluids and subcutaneous immunoglobulin? And specifically what is the medical order in terms of names, dosages, etc? (I’m on Disability Medicare and not sure if this would even be covered) Blessings and Best Wishes ♡♡♡
Hi Gabriella. I’ll chime in if you don’t mind: I think it’s all about getting the right doctor to do the right tests. If you need IV fluids you should test for dehydration. If you’re dehydrated there’s really no reason don’t to give you fluids. And IVIG they can test for as well. Good luck!
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