Being Sick

                                                          Being Sick

 

                             To talk about my illness, I have to first talk about Nerissa, so please bear with me.  Nerissa is my second adopted daughter.  I picked her up at Mary and Gerry Burke’s (her foster parents) house on May 20, 1993 to bring her home.  Nerissa was 20 months old.  She had been born 15 weeks premature and weighed 1 lb 11 oz at birth.  Mary and Gerry had taken her home from the hospital at 4 months of age, with a weight of 4 lbs.  At 20 months she weighed 18 lbs, not great but a giant compared to Diane, my older daughter, who had weighed 13 lbs when she came from India at 23 months.   Nerissa was on oxygen 24 hours a day, ¼ liter.  She took liquids, no solid food yet (she had had two cardiac and respiratory arrests from reflux and was resuscitated by Gerry Burke, and had a Nissan fundoplication - surgery to pleat the top of her stomach and prevent the reflux - at age 6 months.  Hence the "no solid food yet")  and had 5 medications that were put in her bottle of milk three times a day.  Her pediatrician said I could still lose her to malnutrition.  I knew she and I were not going to let that happen. 

                             The Burke’s were amazing people.  They specialized in foster care of sick infants: crack and alcohol babies, HIV+ babies.  When I picked up Nerissa, they had 6 children under the age of 6, 4 of whom were HIV+.  We did not head straight home.  Nerissa had an appointment with an ear, nose and throat specialist in Wilmington, a pre-op visit, since she was to have tubes put in her ears in July.

                             On the way north, we stopped at Temptations, a small ice cream shop, to celebrate Nerissa coming home.  After we all had ice cream, I needed to use the bathroom.  I couldn’t leave 5-year-old Diane at the table, so we all had to go.  Nerissa had a refillable liquid O2 tank that I carried over my shoulder, and at 20 months she didn’t walk yet, so I carried her.  This cute little ice cream parlor had a scuzzy, filthy bathroom.  There was no changing table, no counter top, a filthy sink and a filthy floor.  I couldn’t put Nerissa down.  I was wearing culottes, which meant I had pants to get down and then up while carrying an oxygen tank and a 20 month old and trying to keep a 5 year old from touching anything!  Then reality hit: this was going to be harder than I thought! Maybe a lot harder!

                             I had taken a month off from the Emergency room, to let us all get settled in together.  The pediatrician had said I could start Nerissa on baby food.  Spoon feeding her was difficult.  I would put her in the high chair, slowly spoon feed her a jar of something, take her out, clean her and her surroundings, put her back in the high chair and start the next jar.  By the end of the first week she was eating 7 jars of baby food a day!  At the Burke’s she had been drinking mostly milk, but the pediatrician thought she should be on Pediasure.  Burt Aronoff, a gastroenterologist friend who will play a large part in this story, said the difference between Pediasure (for babies) and Ensure (for adults) was that Pediasure had about a teaspoon more of water and cost $2 more per six-pack.  As soon as Nerissa discovered chocolate and strawberry Ensure, there was no turning back.  She drank 4 cans a day: three of them with medicine in them: MTC oil (helps premature babies to gain weight) , Lasix and Aldactone (two diuretics – I prayed nightly in gratitude for the person who invented disposable diapers), Digoxin (she had a heart defect due to her prematurity, that was the reason for the diuretics too), and amoxicillin for her ears.  The 4th can I put her to bed with at night: I figured if it was rotten teeth vs. death from malnutrition, we were going for life.  I still have the pillow with the little brown and pink circles of Ensure where it leaked from the nipple. 

                             We had a great month.  I took Nerissa and her oxygen tank to the Salisbury School so Diane could use her for “Show and Tell” in kindergarten.  We went to the beach and the zoo.  Nerissa ate jar after jar of baby food and drank can after can of Ensure and thrived.  She didn’t walk yet though.  She only had 15 feet of oxygen tubing and seemed to feel there was no reason to walk if she couldn’t go anywhere.  She would push herself with her feet in one of those old-fashioned walkers or she would crawl.

                             But it was time to go back to work.  I wrote the obligatory “What I did on my leave of absence” letter to the hospital board (it was a rule; I think they were concerned about unacknowledged drug or alcohol rehab).  In it, I asked for the same concession that was given to the nurses working 12 hour shifts: that 3 shifts would be considered full time.  In the response, I was told that one of the ER docs had left and I would have to work five 12 hour shifts per week. 

                             Fortunately, I had Paula.  Paula Cutshaw had been my day-care provider for Diane.  When I switched to the ER, she changed her life around to accommodate the 12 hour shifts, and, when I worked night shift, kept Diane at night as needed.  She was trained in infant and child CPR and had established a "no smoking" household so she was prepared to take on Nerissa.  So June 20^th, I returned to work.  Things had changed though.  I was now the mother of two, not one, and had already realized it was going to be more challenging than anticipated.  Little did I know how hard it was going to get!

                             I was off work on June 22, having arranged to be off because it was my 44^th birthday.  Diane wanted to take dance lessons, and that was the day of her first dance class.  When we got home, I put Nerissa down for her morning nap (she was taking two naps a day still) and fed Diane lunch.  By the time Diane was done, I heard Nerissa crying upstairs.  I didn’t feel well and was suddenly totally exhausted.  I told Diane I was so tired I didn’t think I’d be able to stay awake and feed Nerissa.  Diane, ever the practical child, told me to take the lids off the baby food jars, and bring Nerissa down and put her in the highchair and she would feed her.  I felt so bad I was actually scared.  I wrote my mother’s phone number out, taped it to the phone and told Diane, if she had a problem, to call Granny (my mother just lived three miles down the road).  I went upstairs and took my temperature.  It was 102 degrees.  I crawled into bed and fell asleep.

                            Two hours later, Diane came in and said “Granny says it’s her turn to take a nap and you have to get up!”.  Diane had fed Nerissa, cleaned her up, gotten her out of the highchair and into the walker, then called my mother and said “I’m babysitting and it’s boring.  You come!”  So she did, of course!

                            And so it began.  That was the start of the fever.  But there were no other symptoms.  No cough, no stomach problems, appetite was OK.  Nothing except this fever.  I took the kids to day care and worked my shift.  Every afternoon my temperature went up to 102, with no other symptoms.  The standard medical criteria is not to start a work up for fever of unknown origin until the fever has been present for two weeks.  Most fevers just get better.  So, on the 15^th day of fever, while working in the ER, I called Rob Ferber, my internist, and asked him to come see me.  He listened to the story and examined me.  The only thing he found was that my liver was slightly tender.  He ordered lab work.  My liver enzymes were elevated; not hugely, like you sometimes see with hepatitis, not in the thousands, but in the 200 – 300 range.  My bilirubin was normal; I wasn’t jaundiced.  The tests for Hepatitis A and B were negative.  This was 1993, and the test for Hepatitis C had come out the year before, so I was tested for that, and that too was negative.  Dr. Ferber asked Burt, our gastroenterologist, to take a look at me.  He thought I might have cytomegalovirus hepatitis.  That antibody test was positive. 

                            Cytomegalovirus (henceforth called CMV) is a weird virus.  Well, actually all viruses are weird – just Google “are viruses alive?” and look at the answers.  A virus is just a piece of genetic material that doesn’t contain a way of reproducing itself.  They are parasites; they have to infect a cell and use the mechanisms in that cell in order to reproduce themselves.  CMV is a common virus that rarely causes illness.  If you test Americans for antibodies to CMV, 30% will test positive at age 5, and over 50 % will test positive at age 30.  For most of them, it was an asymptomatic infection, or maybe a bit of fever, one of those “Iris the virus” things kids get and get over.  Most infected people have no signs or symptoms.  Once you have been infected, doctors assume that you have the virus for the rest of your life.  Most of the time, it doesn’t give you any trouble.

                            But there are people who do get sick with it, and it causes several different clinical syndromes.  One is a thing called salivary gland inclusion disease, in premature babies.  This was in epidemic proportions in the 1930s in Europe.  Many hospitals had special wards for these babies, who were usually born prematurely, spent some time in the hospital, went home seeming healthy, and came back with hugely swollen salivary glands.  They frequently ended up with tracheostomies to let them breath.  Then World War II came along, and for some reason, there was almost no salivary inclusion disease after the war. 

                            Then in the 1980’s HIV came along, creating a group of people who were immune compromised in a very specific way.  The CMV that they had already been infected with as children or young adults, reactivated.  In these patients, CMV could cause pneumonia, encephalitis, colitis, esophagitis, hepatitis, and most troubling of all a retinitis, an inflammation in the back of the eye that in the early days, before there was effective treatment for HIV, often left patients blind, before they died of the HIV.  It was exceedingly important for those of us who managed HIV patients then, to check the retina at each visit and look for early signs of retinitis.  There was treatment for CMV retinitis, an IV medication called Gancyclovir, which would stop the progression of the retinitis, but would not correct the damage already done.  So early detection was crucial. 

                            Well, Nerissa had been premature, and lived in a household with 4 children with HIV.  I had treated a patient with CMV retinitis for 14 months, but that was several years earlier.  I was no longer working at the HIV clinic.  I was an ER doc at that time.  And I should have had CMV somewhere along the line; after all I was 44 years old.  But apparently I hadn’t had it.

                            In healthy adults, CMV usually doesn’t produce symptoms, but it can.  It can produce something similar to mononucleosis, with swollen glands and sore throat and fever, and it can produce hepatitis.  I had both: the mono with swollen tonsils, like raw meat, and swollen glands and hepatitis.  Another odd thing about this virus, is that it can be passed on in urine, as well as other bodily fluids.  Urine is usually an almost sterile fluid, unless you have a urinary tract infection.  Most things just aren’t transmitted that way.  CMV is.  Mothers don’t think much about handling diapers that are just wet, but apparently Nerissa was shedding the virus in her urine.  She wasn’t sick, but I was.  In June and July, I just had the fever, nothing else.  My doctors said, since it was “just CMV”, I could work the ER as long as I wore gloves.  So I did: 12 hour shifts, with a temp of 102 every day at 2 o’clock.  You could set your watch by it!  Then coming home to two little kids at night (or in the morning since ½ my shifts were night shifts), getting more and more exhausted.  I was referred to Al Bacon, an infectious disease doctor in Wilmington, and my mother drove me up to see him.  He did a few more antibody tests, agreed with the diagnosis of CMV hepatitis, said what I already knew, that there was no treatment for it (the Gancyclovir was not recommended for hepatitis, only for the retinitis), but he thought I would get better in about 6 weeks.  Well, that would put me in August!  So I made arrangements to rent a condo at the beach for a week at the end of August, trusting that I would be well by then.

                                          Except that I wasn’t well by then.  I still had fevers and felt awful and was tired all the time.  And there I was, with two little girls in a condo in Ocean City, Maryland.  We got up around 7 am.  I gave them breakfast, planted them in front of cartoons on the TV and went back to bed.  Fortunately, they stayed in front of the TV.  I would get up again between 10 and 11 am, play with them a little and give them lunch.  Then we went to the beach.

                                          Fortunately, the condo was just across a small street from the beach, because, with a 2-year-old and a 5-year-old, we went to the beach armed with, well, everything!  I took a red wagon, with a beach umbrella, blankets, snacks and drinks and a play pen, with Nerissa in a side carrier and Diane holding my other hand or riding the wagon.  There was just me and the kids.  In order to take Diane out past the first waves, Niss had to be in the playpen where I could see her.  She didn’t like the ocean much, or the sand really at first, though she did by the end of the week.  I would get all that stuff down to the beach and set up and take Diane in the water, and then Niss in the water.  We would only be there about an hour, and then they were done; that was it, back to the room.  They took afternoon naps (and so did I), and, after that, we would go out to dinner.  I had brought all Nerissa’s little baby food jars with me, enough for 7 jars a day for 6 days, but on day one she decided that yucky stuff out of little jars was never passing her lips again!  With the Nissan fundoplication, she could only eat very soft food, which worked out to the rotisserie chicken at Roy Rogers, or the inside of the big BK fish at Burger King!  So that was it, every meal was Roy Rogers or Burger King.

                            Things were easier for me and I had more energy in the cool of the evening, so we would play miniature golf or go to Trimper’s rides every night.  Diane loved that part.  Then home to bed and same again the next day.  After 5 days of this vacation, I was more exhausted than ever.  I packed everything up and cleaned the condo (I was renting from a nurse friend and wanted it to be exceptionally clean) and as we were going out the door, Diane said “This was a really great vacation!  Can we do this again next year?”  God, I hope not! 

                            I had started to break out in this head-to-toe red, weepy, itchy rash.  One of the ER docs looked at it and said he thought it was a viral exanthem (a rash like measles, caused by the CMV) and I could work wearing gloves, like before.  So I went back to work for a week until, on the Saturday of Labor Day weekend, I woke up in the middle of the night with really severe stomach pains.  Fortunately, several months earlier, Carolyn, the woman who cleaned my house for me, had been evicted from her trailer and asked me if she and her children could live in the office, which was attached to my house and no longer used.  I went down and woke Carolyn and asked if she would watch the girls because I needed to go to the ER.  I drove myself to the hospital.

                            Bad timing: I got there at morning shift change.  The nurses put me on a gurney right away but the doc going off shift was finishing up with his patients and didn’t want to start another one (I found it hard to forgive him for that), so I had to wait.  The doc coming on took one look at me, rolling on the stretcher clutching my stomach, and gave me a shot of Demerol and Vistaril.  Great stuff, Demerol!  Then he saw me and my internist saw me and the surgeon on call saw me (the one on call was someone I did not like or trust and I asked not to see him, so his partner came too, but just stood there while The one I didn’t like examined me).  There was nothing to make anyone think it was a surgical problem, so the gastroenterologist (Burt, a good friend), saw me and set me up for an emergency endoscopy.  He put me out with more Demerol and Versed and then reversed the Demerol (an opiate) to wake me up, so I awoke screaming “Demerol, more Demerol!”  It was easy to see how people get addicted to this stuff.  It just took the pain away like magic!

                            I had inflammation of the everything: esophagitis, gastritis, duodenitis.  They transferred me up to a private room.  Unfortunately, I also had this red, weepy, itchy rash.  There’s no way to prove for sure that it wasn’t scabies, so I had to coat myself with Kwell as treatment, just in case.  While I was in the bathroom doing that I also had bloody diarrhea, so apparently I had colitis as well.  They started me on meds for the symptoms, mainly sucralfate.  There was no liquid form back then, so they would put the tablets in a little water, wait for them to crumble, stir the powder into the water and I would swallow it down.  That stuff really worked: almost as soon as I started it the stomach pain eased off.   The next day my doctor stopped the Demerol and made the shots Vistaril only, since I seemed to like the Demerol so much! 

                            Diane and Nerissa were being cared for between Paula, Carolyn and my mother.   One of them (I can’t remember which) brought them to the hospital the second day to see me, so they would know I was OK.  Unfortunately, they caught me as I was about to go down for an abdominal CT scan: I had been sedated with Demerol and Vistaril again and was just transferred to a gurney when the girls arrived, so I was up high and groggy and I’m sure my speech was slurred.  Diane backed away against the wall, with her hands behind her back and would not come near me.  Fortunately Chris Wasson was there, a hospital social worker, a good friend of mine and the mother of Diane’s best friend, so she was able to reassure Diane a bit, but she was clearly still frightened.  I always dated Diane’s stuttering to that day (when I got home from the hospital a week later she was stuttering badly, and she hadn’t before that).

                            There were lots of tests.  The arterial blood gases weren’t as bad as I thought they would be.  The IV was inserted in the back of my hand by the best nurse for IVs in the ER, and, since my veins were not good, they let me baby it and keep it for 5 days without changing it.  The worst of the tests, oddly enough, was the nuclear lung scan.  One evening I was just watching TV and suddenly felt weird.  My pulse was too fast to count, so I rang for the nurse.  They got one of the cardiologists to see me right away.  I had a supraventricular tachycardia and my O2 levels had dropped.  I was dizzy and somewhat short of breath.  The lung scan was done to rule out pulmonary embolus.  I had always thought of this as a rather easy test, but when you are short of breath and dizzy and frightened, and trying not to be frightened and they strap you down absolutely flat in this narrow cradle so they can roll you into different positions for the scan and they just hold you there, it was pretty awful.  I’m sure it didn’t take more than ½ hour but it felt like hours in each position.  I also had an echocardiogram to establish if there was pericardial or myocardial damage from the virus, but it was normal, as was the lung scan.

                            Burt, my gastroenterologist/friend, came in to discuss HIV testing.  Since I had treated many HIV patients and was now working the ER, and had CMV, he thought I should be tested again (my last test was probably 2 years earlier, when I stopped my private practice and stopped working at the HIV clinic and started in the ER).  He wanted to know if I wanted to wait and have it done later somewhere other than the hospital, so the results wouldn’t be on my hospital record.  I was surprised at the question.  If I had it, it would certainly be clinically relevant, and people would know soon enough anyway.  I told him to just order it.  It was negative.  I had been telling people they weren’t going to get HIV professionally; it’s your private life that catches you on that one. 

                            After a week, they had all concluded that I had CMV hepatitis and mono, complicated by a systemic vasculitis that involved skin, esophagus, stomach, duodenum, colon, lung, possibly minimal involvement with myocardium and/or pericardium (symptoms but negative echo), but not kidneys (the most dangerous place to have a vasculitis; the renal involvement can kill you), bladder, or brain (I had reason later to think they were wrong about that, but that was the initial conclusion).  Rob Ferber, my internist, thought I should see a dermatologist and follow up with an infectious disease specialist.  We didn’t have either in Seaford, so I would need to go to Wilmington, and those were his discharge instructions.  Other than the sucralfate (Carafate) for my stomach, and Zantac, I was on no medications.  He said at discharge that he knew I could make my own appointments, and he did not give me a follow up to see him. 

                            I can’t tell you how abandoned that made me feel.  I wasn’t a doctor!  I was a patient and wanted to be treated like one!  I needed to know that someone other than me was going to follow through on this, but everyone was being so respectful (I have some other stories of what can happen when doctors who get sick are treated like doctors and not like patients; it’s a mistake!).  I wanted someone to take care of me.  Instead I was just discharged.  And when I got home, the three wonderful caregivers who had stepped in quickly brought my daughters home.  But I was still covered with this weepy, red rash, and I hurt when ever anyone touched me, and I moaned or tried to turn a scream into a squeak, and the girls had been scared and I think were still scared.  And I was scared. 

                            But the fatigue was the main thing overwhelming me.  I would get up in the morning, get the children up and dressed and take them to day care, even though I wasn’t working.  Then I would come back and sit down.  Just sit there.  At 5 PM I would get up, get the girls from Paula’s, feed them dinner, play a little bit and put them to bed.  One day I realized I needed to grocery shop.  I got in the van and headed to the store, and then realized I needed gas.  I remember standing by the gas pump crying, because by the time I finished pumping gas, I no longer had enough energy to go get food. 

                            Fortunately there was Carolyn.  She had been my cleaning person, and sometime after I closed the office, she had been evicted from her trailer and asked if she and her kids: Nikki 17, April 15 and Michael 5, could move into the office.  So Carolyn took over making sure we had food and meals.  Her idea of meals and mine were a bit different.  She didn’t do vegetables and it would not be unusual to have mashed potatoes and noodles and rice all at the same meal, but I don’t know what I would have done without her.

                            The fatigue was interesting, amazing, like nothing else I’ve ever imagined.  In the second week home, I thought, I don’t need to just sit here.  I could watch a movie.  There was a video rental ½ block from my house.  So I walked there and rented a movie.  Three times on the way back that half block, I sat down on the sidewalk because I was so tired I couldn’t walk any further.  It took an hour and half to negotiate that little trip.

                          

                            Between my mother and I, we did get those appointments made to Dr. Bacon, my infectious disease doc, and the dermatologist he referred me to, and the general surgeon they both referred me to for a full thickness skin and muscle biopsy, to determine the extent of the muscle involvement in the vasculitis.  Which wasn’t that bad according to the biopsy.  The biggest problem with the biopsy was that it was done on the top of my thigh, right where my lap is when I sit.  The girls were, oh so careful, not to sit on that side, but they would slap their little hands right down on the sutures to climb up on the other side.  So again, I was screaming when they touched me.  Then the dermatologist and Dr. Bacon debated steroids and decided I could take a short course of high dose steroids and see what happened.  So I took 100 mg of prednisone for 4 days and a 10 day taper.  Dr. Bacon also pointed out that I had lost 10 lbs, and it would probably be a good sign if I could put some of that weight back on.  And 25 lbs later…

                            Steroids, like most things, affect different people differently.  Oddly enough, they make me sleepy.  So for two weeks I ate and took a pill and slept for 6 hours and ate and took the next pill and slept again.  And worked picking up children around that schedule.  The prednisone did clear up the rash though, and probably a lot of the internal inflammation.  Didn’t help the fatigue at all though, either on it or after it. 

                            Dr. Bacon called it a post-viral chronic asthenia.  He did do the more exotic Epstein Barr virus antibodies to see if that virus was involved but those were normal (I had had Epstein Barr, the usual kind of infectious mononucleosis, 9 years earlier).  Now we’d just have to see how long all this lasted.

                            There was the money issue: I was in independent contractor, not an employee, so there was no employer disability insurance.  I had taken out a disability policy when I was in private practice.  When you are in business for yourself, you figure you have 3 months of accounts receivable coming in, so the disability insurance wouldn’t kick in for three months.  But working in the ER, I was getting a paycheck and now I wasn’t and nothing was owed to me, and it only took a month to go through savings.

                            Fortunately, another doctor, Harry Freedman, was aware of this before I was.  He came to visit one day, the only doctor who came to visit me at home.  He sat and chatted and as he left handed me an envelope and said “If you don’t need this yet, you will soon!”  It contained a check for $1000.00.  My friend, Burt, then called me and said “Harry says you’re going to be in trouble soon.  We can organize to help you if you want but I wanted to be sure it was OK with you.”  Okay?  It was a godsend!

                            My former secretary from when I was in private practice, Pam Quillen, lived 7 doors down from me and she saw what was coming too.  She organized the town, going to the churches.  They started bringing food, every other night, each time enough for two nights.  So this wonderful small town fed us and the doctors supported us.  I often thought that if I had still lived in Philadelphia when this happened, we could have all just died.  The wonderful people of the small town!  It is an amazing thing to be the recipient of that kind of charity when you need it.   

                            And little by little, things got better.  I found a book called “Curing Fatigue” by David Bell.  He talked a lot about diet, but I had no control over what I ate, with the community providing it.  He talked about sleep and exercise and I did what I could, but there were some little ideas that helped.  I needed to be committed to doing certain things.  I started studying the bible with the help of Rick Warren’s book “Bible Study Methods”.  I took piano lessons from Jeff Scott, a neighbor two doors down, who understood that the main reason for picking up piano lessons again was the need for someone to keep me accountable for something.  And I prayed, a lot, because I needed to figure out how I was going to get back to work.  I had two little children to raise!   

                           In medical school, we had read a book by Norman Cousins, in which he talked about contracting an autoimmune disease and combating it with humor.  He watched a lot of Marx brothers movies and "I love Lucie" reruns and felt that this strengthened his immune system.  Well, I could now get to the video store, so I thought I'd try that approach.  But I was tired and I hurt and nothing was funny.  Nothing made me laugh.  Then I watched "Die Hard"!  That was it!  There was John McClane, one man, alone, shooting all the bad guys and defeating them.  That was my immune system.  I watched Die Hard and Die Harder a couple times a week for months!  I would swear that movie saved my life!  I tried other similar movies, but nothing made me feel as good as Die Hard.  Arnold Swarzenegger movies had their use too.  I could put one on and I would fall asleep in 5 minutes and stay asleep for the length of the movie.  Except his comedies: I finally got to the point that Junior and Twins and Kindergarten Cop actually could make me laugh.  Movie therapy!          

                            My grandmother was appalled years later when she realized that I had gone through this and had not turned to family.  And I’m not sure why.  My mother was helping, watching the kids, driving me to doctors’ appointments in Wilmington.  She was retired, with a government pension, and gave me what she could.  My grandmother was 89, living in Philadelphia, on Social security and whatever she had left of my grandfather’s savings (and he was a bus driver).  And all these wonderful people stepped in before I realized how long I would be out of work and how much help I needed.   I kept track of the financial assistance and got to repay some of it and pay some of it forward. 

                            The ER would not take me back part time.  I had to work 12 hour shifts and it would be years before I could do that again.  Ken Smith, another general internist in Bridgeville, let me work part-time in his office.  He was fairly new in town and got a call from Stockley center, Delaware’s state institution for the developmentally disabled.  He said “I don’t want this, but it might be perfect for you”.  So in March, I went to work at Stokley Center.  I had been completely out of work for 5 months.

                            When I was starting back to work, I talked to some of those wonderful people who had been bringing us food for four months.  When I suggested they could stop, they said no!  They said I would need all my energy to work and deal with the children, and they would feed me for another month.  And so they did. 

                            In America, they call it Chronic Fatigue Syndrome.  By definition: it is extreme fatigue that lasts more than six months and can’t be fully explained by an underlying medical condition.   I thought my fatigue certainly met that definition, following the cytomegalovirus but not fully explained by it.  When I had it, lots of physicians didn’t really believe it existed. 

                            As I said, it got better.  I worked at Stokley for a year, then switched to the prison system, and got to the point that I was working long days again.  But it does have a tendency to recur.  My first recurrence, a couple of years after the first episode, followed a minor stomach virus.  The doctor I saw then said this might always be my response to viral illnesses.  The fatigue only lasted two months that time, and fortunately I haven’t responded to other viruses that way.  And believe me, the fatigue when this recurs is so overwhelming, I can’t confuse it with anything else.

                            I decided to work with a trainer once, and after a couple of weeks the CFS flared again.  By then there was a lot more literature.  In America, they wanted to change the name to Systemic Exertion Intolerance Disease, a name that angered me, because it makes it seem like it’s a choice.  It isn’t.  In the UK, there were calling it Myalgic encephalomyelitis, which at least sounds like a real disease!  Now most authors just abbreviate it ME/CFS.  I accessed the original British studies on line and went through them.  The largest had 3 groups: usual care (telling people to pace themselves, don’t overdo it, avoid the boom or bust sort of thing), graded exercise and cognitive behavioral therapy.  I had done cognitive behavioral therapy years before for dysthymia (mild chronic depression) and could use that easily enough, but the point of the CBT seemed to be to get the patient to understand that the condition would get better.  I already knew that.  I’d been around it before.  I just wanted to know how to get it better faster.

                            Graded exercise seemed to be the thing.  I went to the gym and walked exactly 10 minutes on a treadmill, adding a minute each week.  When I could do 20 minutes I added a bike.  I did the same with chores at home, didn’t exercise on grocery shopping days, etc.  Did housework for 15 minutes and no more for a week, then added to it.  Kept working through all this though.  Seemed to help.  There’s a lot of criticism of the British studies, but no one seems to be offering anything better. 

                            I had a long flare in my last job, first from never getting enough sleep (I presented the bosses with phone bills that documented the fact that in three months I never had more than 1 ½ hours unbroken sleep) and then a theft of drugs that were ordered under my drug enforcement agency number that increased the stress level.  When things kept getting worse and nothing changed I lost it one night, sent out an angry e-mail to everyone and was fired.  Fortunately, one of those bosses said “Hey, look.  She sent us this stuff (the phone bills) months ago and we didn’t do anything!”  She felt they owed me so they rehired me part time for some odd jobs.  That allowed me to at least decide how and when to retire.  I had another flare when I first retired.  Now I do tire easily, but this is not like the CFS.  That’s a whole other ballgame.  I am sort of worthless after about 2 pm though.

                            I see posts on Facebook about people who feel criticized for having diseases that other people can’t see.  ME/CFS is the ultimate disease that other people can’t see.  If someone doesn’t tell you, you’ll never know.  Except in that last job, I never felt that anyone criticized me for the fatigue, but when I was in the middle of it, I was so tired that I probably wouldn’t have noticed!  And it is probably what every doctor needs, to have to deal with some sort of chronic illness, the ultimate lesson in medicine. 

                            Now Dr. Fauci says they are seeing ME/CFS as a consequence of COVID-19.  For those that develop this, it will take months to recover and have lifelong effects.  Hoping that what I've written here might be helpful to some of those people.