On Mourning

Veta Collins, beloved Mom

I was doing it wrong, and I knew it. It was one year ago today, my mom had just died, but I wasn’t crying.

“Something’s wrong with me,” I confided, oh so quietly, to those closest to me, a week later. They assured me there was no right way, no wrong way, to grieve. That it would come, when it was time, when I was ready.

Apparently, that time arrived at 9 PM last night. I was thinking about what state of mind I was in a year ago, waiting for The Call to tell me she had passed away.

The dam burst, and finally, the river of tears flowed. I wasn’t just missing her any more – I was mourning.

All day today, I’ve gone through it all again, remembering the sad details of the time between her stroke and her death, writing them out. If I don’t remember them, and acknowledge them, how can I let them go?

I was in a very precarious state, physically, by the time my mom died, two months after a hemorrhagic stroke. Those months were a nightmare, watching my strong, capable, and independent mom being broken into a mere shell of herself. I suspect the mourning got put on hold, subconsciously, so I could recover from the toll the physical, emotional, and mental stress had taken on my own fragile body. Those of us with ME, CFS, fibromyalgia, etc, have to carefully and frugally measure out our energy use, our spoons. (See Always Counting Spoons if you aren’t familiar with this concept).

But there was little I wouldn’t do for my mom. She had always been there for me, through my many mistakes in life, always ready to pick me up and help me out. We were best friends who spoke most every day, and had no secrets.

She was also a real rarity, because she believed in me despite my illness, and supported me both emotionally and financially.

You might think any mother would support a sick daughter, but that’s very sadly untrue when the illness is ME (myalgic encephalomylitis), CFS (chronic fatigue syndrome), fibromyalgia, chronic Lyme. They are not understood even by many doctors other than a few specialists, and family, well, most family members don’t take the time to try to understand. I have a lot of friends ill with the same things, and very few have the support of their families, or only part of the family.

I was so very lucky, to have my mom until she was 89. She was still telling me about any article or show she saw where my illnesses were mentioned, still reading articles about it that I posted on Facebook, trying to understand better. She still listened to me moan and groan and complain when I needed to.

I had her, and I have my youngest daughter, who has a milder version of these damn diseases. She’s my caregiver, my best friend, my defender, intelligent and brave, and with a bit of her grandmother’s iron spine. You don’t want to piss her off anymore than you did my mom – her grandmother taught her well. I have my son-in-law here, too, who very bravely accepted the weight of being part of our family. It’s not an easy thing, being a caregiver to someone like me, mostly bedbound. But such is the power of Love.

I couldn’t get through this life without them, and I don’t know how my friends who have no family support do it.

I’ve been blessed, that’s for sure, and I’m so very thankful for my mom’s steadfast love and support. I will always love her, and I know she’s watching over me, loving me still.

Love never dies.

Shores of Avalon

Reflecting…
In some ways, I was relieved when my mom finally passed away. Seeing her the way she was, two months after a hemorrhagic stroke, ripped my heart out every day. She’d had the stroke in early September, and the months since had been filled with far too few ups, far too many downs, and devastating punches to the gut.

She was only affected physically a little, and that mostly passed. But her mind… That bore the brunt of the bleeding in her brain. That is what haunts me.

Dementia was just a word, without real meaning, until I watched, from a distance, as she slid further and further away. I wanted to go to her, in Houston, but I’m homebound with my own illnesses, and there was no way I could travel.

There were endless phone calls, trying to talk to her, and talking to her doctors, nurses, and my brother and sister-in-law, who were there. Hours spent researching, trying to understand the possibilities for recovery.

More hours went into hacking into her patient record at the hospital, pouring over the flood of lab and test results, learning a whole new area of medical terminology, translating that for family, and relaying it all to my eldest, who was deployed to the middle east.

I’d already spent 4 years being my mom’s patient advocate from a distance, intervening with doctors, calling, faxing, emailing, tracking her labs, researching her meds and demanding changes from doctors who were too busy to spend the time I was.

She was 89 years old. Every problem was written off as “just getting older.” How angry that still makes me. If they’d paid more attention, they’d worked harder to control her blood pressure, and sent her to the ER when her BP was incredibly high and she had a headache, the outcome could have been different.

After the stroke, my brother would bring the iPad to the hospital, so we could do video chats. They were difficult from the start, seeing my mom’s confusion, anxiety, distress, and fear. She didn’t understand that she’d had a stroke, where she was, or what was happening. Sometimes she knew me, sometimes she didn’t. The nurses said she was often combative, angry and afraid, cussing them out while they tried to help.

As the days turned to weeks, getting her to eat, drink, and take her meds, became nearly impossible. She went from hospital to nursing facility and back numerous times, with new issues cropping up, one after the other. She often would wander around, and had many falls.

The last video chat we had haunts me. My brother propped the iPad up on the table, so I felt like I was there, but I don’t think she even looked at me. Her face was gaunt, and her always beautiful skin was marred by large deep purple and green bruises, with more on her arms and legs, from her falls. Her eyes stared blankly, empty except for anger when my brother tried to get her to eat her meds-laced ice cream.

She wasn’t there. The spark of Love and Life that animated my mother, spilled from her over me for my whole life, was gone. I knew she would be appalled at her condition, and would never have wanted to go through all this. I cried that day, to see her so diminished, bruised and battered, who had always been so strong and imposing.

Making the decision to put her in the gentle hands of hospice care that day was easy. The doctors now said she had terminal dementia. Hospice would see that she was comfortable, allowed to slip away naturally.

The day after hospice took over, she went to sleep, and became unresponsive. My brother showed me her nice room on chat, with all her furniture, as she laid still, on the bed. No more IV’s, no more prodding her to eat, no more distress. Resting gently, she slipped deeper and deeper into a coma.

I thought she would pass away quickly after that, but she was stubborn to the end. Every night I went to sleep, so lightly, in case The Call came in. A kind-hearted hospice nurse told me it could “be a while,” and he had one patient who went 33 days in a coma, in what is basically a hibernation state. I had no idea someone could linger that long without water or an IV.

The waiting was hard, and very busy, helping to arrange a funeral in her tiny home town of Loop, TX, and keeping folks aware of developments.

My ill body was not taking all this well, and I was having some major physical issues. Too little sleep, too much laying in bed wondering how she was in the middle of the night, too little eating… I tried desperately to stabilize my own system.

My mom lasted 6 days. The Call I’d been expecting came moments after I woke up on my own, alarmed. We’d both always known when the other was going to call, and this final call was no exception.

Gazing over the mountains my mom had loved so much, I watched the dawn light creep into the day, as I had just enough time to say a final goodbye.

I felt her then, and I’ve felt her presence many times since then. And I always will.
She was truly my guardian angel in life, and nothing’s going to stop her from continuing to look out for me.

This, I know.

We Know the Enemy, or ME/CFS/FMS Explained Again.

My mother said to me the other day that my brother can’t seem to wrap his mind around the concept that I’m really sick and there’s really very little that can be done about it. He seems to still think that “if I only went to better doctors or the right hospital, they could figure out what was wrong, and could fix it and I’d get well”. He has said the same thing to me. I know he means well, but he doesn’t seem to understand some things.

We know what is wrong with me. I have (and have had for over two decades) a diagnosis that is shared with at least one million other people in the US, with an estimated additional 3 million who have it but have yet to find a doctor who can diagnose it. It is poorly understood, although there is more research being done, worldwide. We learn a little bit more, get a few more pieces to the puzzle, every year.

Going to see another doctor would not change anything. I’ve had more than a second opinion – there have been thirds & fourths & even fifth opinions. There have been specialists from every specialty there is to look at my case & weigh in, and everyone is in agreement.

I have been diagnosed with Chronic Fatigue Syndrome (CFS, or alternately, ME – Myalgic Encephalomyelitis, or ME/CFS), a complicated neuro-immune disease. I also have Fibromyalgia (FMS), and chronic Lyme Disease, diseases that commonly overlap with ME/CFS.

In July of this year, a group of internationally recognized experts came together to develop a new International Consensus Criteria (ICC) for ME/CFS, which was published in the Journal of Internal Medicine. I’m attaching it here in case you’d like to read it – this is the ICC.

First, a note from the ICC about the name issue:

The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

Here’s a taste of what they have to say about it:

Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS)  and immune system, dysfunction of cellular energy metabolism and ion transport, and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology.

I more than meet the ICC for ME, which require the patient to have symptoms from several categories, and every possible other cause of my illness has been tested for repeatedly. This is what is wrong, and why I’m still sick & getting sicker all the time. ME/CFS is a progressive illness.

I have seen:

  • Three Primary Care Providers (at least)
  • Two Rheumatologists plus the Rheumatology Department at Ohio University Medical School
  • An Internal Medicine Specialist
  • An Infectious Disease Specialist
  • An Endocrinologist
  • Two Gastrointestinal Specialists
  • Two Neurologists
  • A Cardiologist
  • An Ear, Nose & Throat Specialist
  • And one literally world-renowned Pain Management Specialist

I have had every test, every lab (and as the Labcorp tech put it the other day, my doctor orders tests that don’t exist – they do, but only thru speciality labs), CT’s, MRI’s, EEG’s,  EKG’s, a sleep study, cardiac studies (at none other than NIH), and another cardiac study at Johns Hopkins.

I have over 1,000 pages of medical records & lab results, all of which point to my having as “classic” a case of ME/CFS, FMS, and chronic Lyme, as a person can have. As a result of those, I also have Irritable Bowel Syndrome, Migraines, Hypothyroidism, Neurally Mediated Hypotension, Myofascial Pain Syndrome, and Inflammatory Reactive Arthritis.

In other words, I am a “typical” late stage ME/CFS patient.

It is believed there may be a number of different triggers for ME/CFS, which set off a chain of events in the body, similar to a cascading system failure in a computer. Once started, it’s difficult to stop. Very few people recover completely, and if they do, it’s usually within the first few years.

This has also been called “Post Viral Syndrome.” It is fairly common in patients recovering from mono, which is caused by Epstein-Barr Virus (EBV) – they simply never get over it. Having ME/CFS is like having a slowly worsening case of mono that never ends, and it expands to affect multiple body systems. Most ME/CFS patients have very high levels of antibodies to infections such as EBV and members of the herpes family, and I am typical in that regard – my EBV, HHV-2, HHV-6, Human Parvovirus B-19, and others are off the charts.

My first diagnoses with “CFS/FMS” was almost 20 years ago. At the time, the illness was fairly mild, relapsing & remitting episodes of fatigue, severe headaches which lasted days & I initially attributed to recurrent sinus infections, and some sleep issues. I had good weeks & bad weeks, and during the good weeks, it didn’t really seem like much was wrong. I “pushed through” the bad weeks because I had to – something most patients do, but unfortunately for us, those who push through the longest & the hardest are the ones who wind up the sickest.

In late 1998, I seemed to get the flu, except it never left. The headaches were constant, and after three rounds of antibiotics without improvement, with incapacitating exhaustion, I and my doctors realized that something was wrong beyond sinus infections. That is when the formal diagnosis of “CFS/FMS” first shows up in my medical records.

As the years have passed, it has slowly gotten worse. We have tried (and are still trying) every medication possible, as well as alternative therapies. I follow the clinical trials that are ongoing, and my doctor is more than willing to give me my own trial of medications that might help. Sometimes they do, and sometimes they don’t.

I worked too long. I should have stopped in 2004, when my rheumatologist told me to. But I’d just bought this house, and had a thriving business, so with the “help” of stimulant medications, I pushed onward, pushed myself beyond what you would believe, to work a few more years. But we know now that it’s the patients who push the hardest who get hit the hardest, who go downhill the quickest.

Now, I am primarily housebound, if not bedbound. Going out at all is very hard.

I have incredible exhaustion which is beyond your wildest nightmares, and which gets worse after any exertion, whether physical or mental, and can be worse for days, weeks, months, etc. This has it’s own name, and is one of the defining symptoms of ME/CFS: Post-Exertional Malaise (PEM).

As is typical, I have severe headaches, which are accompanied by intense sensitivity to light & sound. There are some patients in whom this gets so bad that they must move to an isolated area, and spend their lives in silence & the dark, not even able to speak above a whisper.

I have pain, in so many places, a generalized ache all over my body, but also knots in the muscles and the fascia (the covering of the muscles), and also osteochondroitis (inflammation & pain in the spaces between my ribs & breastbone). The pain is not helped by tylenol or advil, it takes the strong stuff – opiates – to dent it at all. There is never a time without pain. It’s a matter of degrees.

I have constant gut issues, commonly called Irritable Bowel Syndrome, but it goes beyond that. I have Leaky Gut Syndrome, where particles from food I eat leaks into the bloodstream. Since it doesn’t belong there, my body develops antibodies & sensitivities to it. It has reduced the number of foods I can eat tremendously, and what I do eat often causes bloating & cramps.

There is more, but I don’t think I need to go into it any further. Hopefully, you are finally getting the idea that it’s not a matter of finding the right doctor who will magically get me well.

I will continue to watch the clinical trials that are ongoing, and continue to hope that there will be a breakthru. I’ll also continue to try the complementary therapies my rheumatologist thinks might help.

But seeing another doctor, getting another opinion, that’s really just not needed. Not at all. And besides, I can’t travel anymore. That’s out of reach. I’m glad we traveled and did cruises as long as I was able to.  I will forever cherish the memories of Hawaii, Alaska, the Caribbean, and the trip to the UK & Wales I did right before it got severe.

We know the enemy, we know it’s many names – CFS, ME, FMS, Lyme.

But what no one, anywhere, knows is how to cure it.

Maybe, one day, they will.