The Complexities of MCS Or Why I Couldn’t Get a Good Nights Sleep
By Cort Johnson

  I have both CFS and MCS.  I’ve had CFS for 25 years and MCS for about 10.  My MCS is pretty severe and has kept me from working for almost five years now.

My latest misadventure with MCS begin in November as we (my sister’s family and I) prepared to leave San Diego for a Thanksgiving/Xmas celebration in Las Vegas with my father. I had been trying to get out of San Diego for five months now but a mysterious problem with my car that often left me ill when I drove it had kept me stuck there.  

First some background. My car, my only really substantial possession ($3500!), has played a key role in my health for several years now.  It was only 3 years ago that I found a car I could sleep in.  This car, a regular cab Toyota pickup, was hardly comfortable given my height (6’6”) but I was able to curl up in it and sleep at night.  Being able to sleep in it is important because in the winter I stay at my sister’s house in Southern California and housing construction of one type or another over the past two years has made it mostly impossible for me to sleep at the house or on the grounds.  Either I have to sleep in the car or on the hillside on a little preserve adjacent to the house. The hillside is mostly fine during the summer but when it rains I have a bad reaction probably because of the mold in the ground and try to stay away from it. Because my site is almost visible from the street there is no place to pitch a tent (a tarp actually) so when it rains I have to simply lay the tarp over me – not a optimal situation given my sensitivities. If it really rains hard the ground will get wet enough that even with the tarp under me I have trouble staying dry and have to lug huge amounts of wet linen (since I can’t tolerate sleeping bags) up and down off the hillside – an arduous procedure.  In short living on the hillside in the winter is a mess; it’s exhausting, I get sick often, my sensitivities flare up....its basically on the top of my list of things to avoid.

Unfortunately the pickup I could sleep in burned up in the desert a year and a half ago and I had to get another car. This time I wanted a car I could easily sleep in and in lieu of a full-sized van, which is what I really wanted but which the price of gas prohibited, I got a Nissan Quest Minivan. After tearing virtually everything out of it that I could – the seats, carpeting, side panels, the tar insulation on the floor, etc. - I was able to tolerate driving the car but for some reason still wasn’t able to sleep in it. Doing so would cause me to groggily wake early in the morning with a strange taste in my mouth and a headache.  Because of this I spent the last winter I spent on the hill or, when I could, I escaped to the desert when the storms came. 

Upon returning to San Diego from Las Vegas in July to complete my bankruptcy and get some dental work done I started getting sick in the car. Over several months various mechanics found several problems including some small leaks in the exhaust system and in the fuel lines leading to the gas tank. The last fix, which had come just days before we planned to leave had actually seemed to make me worse but upon looking under the car I found the mechanics had left a fuel line unattached (!). I fixed it and resolved to leave the next day.

This decision had some interesting consequences though. About 9 months earlier my sister had put in a new driveway, walkway and patio.  Even though I’d gotten to San Diego three months after that I’d had a terrible time with the fumes escaping from the concrete and even now, 9 months later, I still wasn’t close to being able to sleep near the house.  Since I couldn’t drive, let alone sleep in the car without problems I was back out on the hill but I wasn’t near my sister’s house, I was about a ¼ of a mile away.  My sister had unfortunately bought a house about half a block away from and above a golf course. Since the prevailing winds generally blew from coast away from the golf course the fertilizers were generally not a problem but if it was foggy or if the winds blew from the east I got hammered when I slept on the hill. We had frequently experienced both those situations this summer and I had moved to another part of the hill.  The problem was getting to it; because the only place flat enough for me to get in there was at a busy, illuminated intersection, I had to drag my stuff in there either very late at night or very early in the morning.  The morning I decided to leave I awoke before dawn and carried my stuff out.

That next day, however, I had a terrible time in the van and decided I couldn’t make it to Vegas. That night I brought my linen back up to the hill. The next morning, however, I felt much better driving the car and decided, on the spur of the moment, to attempt to make the trip, and so I left, most of my linen still on the hill....

I started my trip in an apt fashion.  Feeling rather anxious – I had not driven the car for more than a half-hour in almost 5 months – for the first time in memory I pulled the gas hose from the tank before it was done sending gas cascading over the car. After a break to let the fumes dissipate I was back on the road.  I was okay for the first 45 minutes, felt sick at about an hour, was okay at 2 hours and was nauseous but happy as I settled into camp after about three hours.

Bad Night #1 –I wrapped myself up in what linen I had then rolled myself up in a tarp and settled down for a cold and restless night.  I was happy, although I had gotten sick the car, I thought, was fixed and my long ordeal with it was over.

Bad Night #2 - Upon starting out the next day the nausea quickly returned, however, and remained present throughout most of the rest of the trip. No the car was not fixed, it was better but still not fixed. 

Because my father, like my sister, has made the very bad choice of situating his house near a golf course, I have never been able to tolerate spending the night there and always head out to one of two spots. The one closer to the house is out in the pristine desert but I’ve had troubles sleeping there possibly because of a mine nearby. The further one has been used by several generations of Las Vegans as a dumping site, shooting range and off-road vehicle course but I’ve always done fine there. 

I found some linen at the house, bought some more from the thrift store and headed out to the closer more pristine site. I did okay the first night but woke up after the second exhausted with itchy eyes and difficulty taking deep breaths. That day and the families big get together passed in something of a haze. Unfortunately the get together culminated in a dinner in a carpeted room.  After about 15 minutes in the room I could the fog settle into my brain; I began having trouble speaking – after starting my sentences I couldn’t get to the end of them and wandered about flailing for words, I had trouble concentrating on what others were saying, my jokes fell flat, sometimes it seemed I was speaking too loudly, other times it seemed like everybody else was too loud. In short I felt awkward and out of place and ended up struggling through yet another difficult family get-together. These get-togethers in my earlier years with CFS sometimes left me near tears with frustration at my mental slowness and awkward behavior. By now my expectations were lowered – something to try and forget and move on.

Bad Night #3 - I headed out to my good site - the beaten up dumping grounds for Las Vegans but had another bad night. After 10 or so hours in the car my clothes had become saturated with whatever bothered me in the car – another entirely foreseeable problem. As I settled into bed my breathing became tight and constricted as the ‘poison’ began seeping into my body.   

Bad Night #4 - The next day, spying my cargo carrier in the garage, I put everything in that and on top of the car….and had ANOTHER bad night.  Yet again I had made another stupid mistake. During the six months the cargo bag had sat in the garage next to the car and my father’s painting area it had slowly absorbed all the fumes and odors in the garage.  The short 25 minute trip in the carrier was all that was needed to contaminate everything in it.  I knew better than that!

Bad Nights #5 and 6 - The next day the weather suddenly turned shockingly cold with a vicious wind blowing out of the north. Still lacking in linen I was in no way prepared for a night like that. With the heat turned off I spent the night in the house sleeping fairly well but emerging groggy and wiped out the next day. The next night was even colder but the wind was down and finding more linen I spent the night outside of the house. This seemed to go okay but after two days sleeping at the house I was exhausted and more importantly my sensitivities has risen greatly. It didn’t help that every heating system in the city had jacked up its heating systems permeating them with what was for me, rather toxic product, natural gas. This time, however, fortified with even more linen, I made it out to the desert where I spent a cold but mostly satisfactory night.

Bad Night #7 – Theoretically things should have been fine – I was in a good spot, my linen was clean and I was now pretty warm but 5 months away from the desert had rendered me somewhat stupid.  Since I got MCS I have become intensely sensitive to aromatic plants.  I can’t spend much time around the eucalyptus trees that dot Southern California, the pine trees in the mountains or the sage brush in the upper desert. I can’t spend more than a day in the mountains or upper desert.  Most of the aromatic plants in the lower desert are problems only when it rains but creosote, the main shrub in the southwest is at least mildly aromatic all year long.  Although camping near dense stands of creosote has given me headaches and left me exhausted in the past this is just what I did.  I camped in a dip (which limited air circulation) containing a moderately dense stand of creosote. The first night was okay but the second left me nauseous and out of it all day long.

Bad Night #7 – After that the trouble seemed to be over. What else could go wrong? I was in a good location with clean linen – I’d basically worked out all the kinks and was finally settled in – I thought.  About a week later, however, I made yet another mistake involving my linen.  Not wanting to leave my linen in the desert for fear of theft, nor wanting to leave it in the car for long because of the mysterious fumes, I had been driving it to my fathers house and leaving it there. That had worked fine until the golf course or an adjoining yard or somewhere was apparently fertilized.  I could feel it when I drove in that day and I knew I risked contaminating it but I still dropped off the linen at the house – it was either that or leave it in the car. The first night was okay but the second time I did this I had another restless night that left me short of breath and tasting fertilizer for half the next day.  Now the linen is staying hidden away in the desert hidden - safe at last!

This was a rather unusual series of events in itself but times like this, when I get slammed from one side or another by one unforeseen event after another happens fairly frequently.  Life with MCS requires a great deal of attention and scrutiny; it is nothing if not complex.