- Last Updated: 08 November 2023 08 November 2023
"Everyone gets tired now and again, but this felt as if my limbs were made of lead."
It happened in the aisle of canned vegetables.Normally I zoom through this aisle and I despise canned vegetables, but on this day in September of 2017, it felt like something was pushing my cart toward me from the front.I stopped and assessed that I needed to lay down as soon as possible, which wasn’t a good idea in the middle of a grocery store.
I decided to check out even though I hadn’t finished my shopping.Feeling okay as I carried my bags of groceries to my apartment building I assumed nothing was wrong.My 3rd floor walk up was a challenge for all the tenants as there are many short stairs in the old building.But as soon as I entered my kitchen and closed the door, I landed on the floor, fruit, packages and frozen meals scattering all over the floor.As I laid there on my stomach watching my microwave dinners melt I realized that this had never happened before.Everyone gets tired now and again, but this felt as if my limbs were made of lead.
After some time had passed I felt better and cleaned up my kitchen and finished my day.I remembered to go to bed earlier than usual and buckled down to complete the Fall semesters classes I was teaching.Preparing to teach art to beginners was always the least fun part of my job, but actually teaching in front of a class was pure joy.Besides, by then the holidays were coming and I was looking forward to Thanksgiving.An incident like what happened in the grocery store had not occurred again, but as “Turkey Day” approached I had unfortunately caught an acute respiratory illness, much like the flu, complete with body aches, mild fever, cough and congestion.Crushed, I called my family to say I wouldn’t be able to make the drive down to their house on Cape Cod, but would certainly be better by Christmas to join them then.
But Christmas came and went and I was still in bed.And worse yet, I had developed some mysterious urinary symptoms that my doctor could not figure out entirely.I had been diagnosed with Interstitial Cystitis, but the frequency (jumping up several times in the middle of the night to use the bathroom) could not be explained.
At that time I asked a friend of mine her opinion on what was going on with my fatigue, muscle pain, and confused thinking.She was a virologist who had moved to this country with her scientist father in 1992.I had met her at a support group for adults who suffer from sleep disturbances (as this was one of my symptoms as well.)She immediately plunged into research, matching my symptoms to know ailments in her computer and on the internet.I stopped being able to go grocery shopping, and she generously went for me so as I lay in bed for weeks, unable to move, I wouldn’t starve.
It wasn’t long before she found a name for what I was suffering.Chronic Fatigue Syndrome was a name I had heard of, but thought it just meant chronic fatigue.She explained that chronic fatigue was different than Chronic Fatigue Syndrome.I received emails and links and the suggestion to watch the movie “Unrest” which was on Netflix at that time.I burst into tears throughout the film and decided I couldn’t accept this as Jen Brea had symptoms that I did not experience.
But I took my friend’s advice and tracked down with the help of my Primary Care Doctor the name of a doctor at my hospital who specialized in ME/CFS.At Mass General Hospital Dr. Felsenstein appeared to be very smart and loved it when I brought my scientific friend along.Often it felt as if they were having a meeting and I was just sitting there, forgotten.I stopped bringing my friend and endured an entire year of testing, specialist doctors in sleep and POTS, and after everything else potentially causing my fatigue was ruled out, I at last had a diagnosis of ME/CFS and POTS.Treatment was immediate for me in both of these disorders.I had passed the Sleep Study, but received medication for my POTS; a Beta Blocker to slow my Heart Rate, and a pill to lift up my low Blood Pressure.Dr. Felsenstein started me on another drug for pain and inflammation.Through patient groups on Facebook, I found the cheapest compounding pharmacy on the East Coast, Care First Specialty Pharmacy in NJ.
I consider myself a very lucky person even though I got this terrible, stigmatized illness.In less than 3 years I had been tested, diagnosed and treated for ME.Another lucky fact is that the medications I take work well for me.Dr. Felsenstein and at a later date a Neurologist, tried another medication with me as well, but I became so sick from it I remained in bed for over a week.Once I stopped it I felt much better and could move about my apartment again.
Since I already had fibromyalgia at that time, I was fortunately already set up with services and to be on SSDI.I’ve been having a woman from an agency come to my place once per week and help me with laundry, groceries, and cleaning.The only thing left for me to do was figure out what my new life would look like as I could no longer work.As an artist my productivity has plummeted.I had to discover how to be okay with a slower art-making schedule.Some weeks I can only get to my art studio once per week (It’s located right down the street from me,) and others I do not get there at all.It is very discouraging.Presently I’m trying to give myself hope that with Long Covid the scientists can make sense of this devastating illness and have better treatment for it in the future.
Here are some pieces of Melissa's artwork: