disability · health · nonfiction

This is ME/CFS

I don’t know if it is because Ric is away and I am feeling the entirety of my dependency, or if it is because it has been a year and there has been no discernible improvement, but I am struggling at present to keep depression at bay.

This disease, which is presently being re-named as SEID (Systemic Exertion Intolerance Disorder) presents a series of challenges that are seldom understood by the general public (or many medical practitioners).  In layman’s terms, I would like to describe them here:th-4

1.  While the cause of the disease is still in question, there is a consensus that there is a viral component.  The immune system, some believe, has exhausted itself in the fight against the unknown invader.   Antiviral treatment is recommended, however; many, such as myself, have an intolerance of chemicals, so have to carefully monitor the effects of anything we ingest.  While I have always suffered from food allergies and intolerance, I have found lately that this has increased – resulting in immediate skin or food sores.

T-cells, or friendly killer cells, are also compromised by this disease, as discovered by Dr. Klimas of the Institute for Neuro Immune Medicine in Miami.  Dr. Klimas’ clinic is currently the only one testing for and treating this aspect of the disease (that I know of).  The cost for a Canadian to visit the clinic is $10,000.  Please understand that this is for a consult, and commencement of a treatment protocol, not a cure.

2.  Widespread inflammation affecting the brain, spinal cord, and muscles.
Mentally, this means that cognitive functioning is affected.  Executive functioning – the ability to plan, organize ideas, or deal with complex thoughts – has become difficult (relative to my state of exhaustion), as has working memory – the ability to carry an idea or concept from one application to another.  Numbers, for example, are impossible to keep straight.  I might see the number 215, but when I try to relay it to another it will come out 415.  I constantly mix up dates, appointment times, etc, to the extent that Thor has to keep my personal calendar.  Reading and absorbing what I’ve read takes repetitive attempts, and writing is challenged by the loss of words, or recognition of words.

Inflammation of the spinal cord means my nervous system does not function properly.  Outside stimulus, such as smells, sounds, or movement, can be overly taxing.  My startle reflex, like a newborn baby’s, is on overdrive.  Emotions, whether positive or negative, send me into a spin, creating a “wired affect” which disturbs sleep and my ability to rest.

My muscles have become not only weak, but unreliable.  In the early stages, before diagnosis, I have would have weird cramping, like Charlie Horse’s, in my legs and feet.  Now, the sensations range from tautness and extreme weakness to a deep, relentless pain.  I will often stumble or fall, and drop things.  I can no longer count on my body to support me, so I walk with a walker for short distances and take a wheelchair otherwise.

3.  Orthostatic Intolerance is another factor in this disease.  Basically, my body can tolerate standing upright, or sitting, for short intervals only.  This makes cooking, showering, or even sitting in the car challenging.  I take most of my meals in bed, where I can have my feet raised, and recline the seat when in the car.  (Driving is not an option for me right now.)  Meals need to be simple and instant, unless someone else is preparing them – and I must say my husband has been a gem!

th-34.  Exercise (society’s answer to everything) is not so easy for the CFS/ME/Fibromyalgia patient.  While some strength training is recommended, aerobic exercise can severely set back any progress.  Trial and error is the protocol here, with a technique called ‘pacing’.  Pacing involves sandwiching activity with rest, keeping in mind that there is a limited amount of energy available for activities throughout the day.  For example, on the days that I wash my hair (now only once per week), I know I will have little energy left for anything else.  My doctor suggests setting a timer so as not to overdo anything, an idea I have yet to implement.

5.  Lack of restorative sleep.  I tend to suffer from insomnia, although this is improving.  Originally I would manage 3-5 hours of broken sleep per night, but lately 5 hours seems to be the norm.  Still not enough to feel recharged.  (I am not even sure if that is possible at this stage.)  Compensating with meditation seems to help, the key being to have solid chunks of time without disruption.  (No TV, radio, computer, phone calls, etc).  This is easier than it sounds.

6.  Grief/ depression:  naturally with the loss of mobility and normal functioning there is going to be reactive depression.  I am generally a happy, content person, but that only goes so far in the face of this challenge.  Unable to work, socialize, travel, or even tend to normal household routines, it is difficult to “keep the faith”.  Prior to becoming ill, I was passionately engaged with my work and my family, belonging to clubs, taking workshops, and so on.  I felt as if my life was going somewhere, and it was exciting.  Dropping out of sight means an automatic loss of the things that once brought sustenance:  relationships, goals/ planning, and a sense of purpose.  (Where is the purpose in being bed-ridden everyday?)  Grieving is not easy because it calls for resignation and acceptance, and my soul is not complying.  I keep telling myself that this is a big inconvenience that will one day just go away and I can get back to living.   Wrong!

th-57.  Exhaustion.  This is not your weary at the end of a full work day exhaustion.  It is system wide.  Talk on the phone too long, hoarseness signals my vocal chords are tired.  Spend too much time on the computer (writing this has been an all day adventure), headaches set in, as well as mental fog.  Stand or sit for too long, I feel both my spine give out, as well as swelling in my lymph nodes.  Overall exertion – going out for dinner – and I am flattened for a period of time with flu-like symptoms.  The more I attempt to live a normal life, the more my system complains.  I would like to say that progress out numbers setbacks, however; the reverse it true.

When I told a nurse friend of mine that this disease is more prevalent than breast cancer, her response was “No way!  How can that be?” (meaning, how can it be that so little is known about it.)

I have a few thoughts on that matter.  Patients suffering with ME/CFS/ Fibromyalgia are often homebound, and therefore, out of sight.  They do not have the energy to walk for a cure or rally together for any awareness.   This is the invisible disability.

As there does not seem to be one drug treatment that addresses the issues, there is no money to support research (much research is funded by the pharmaceutical companies).  In fact, I think this disease is like the proverbial canary in the coal mine – a warning about how toxic our environment and food has become.  Who wants to face that?

So, where is the hope?  How do I cope and carry on?  I follow a very simple regime of diet and treatments:

a.  I avoid dairy and gluten in my diet, and wherever possible, processed foods.  I did follow a vegetarian diet for four years prior to being diagnosed, but have had to add some meat back into my diet for convenience matters, however; digestion of heavy meats causes severe IBS symptoms.  I have minimized caffeine intake, avoid alcohol, and need to work on eliminating sugar.

b.  I see a Doctor of Chinese Medicine for acupuncture and herbal supplements.  These include a probiotic, an adrenal boost, digestive enzymes, and other supports as needed.

c.  I see a specialist to address my allergies and asthma, as this is exacerbated by the disease.  I do take prescribed medications, which is constantly monitored.

d.  Restorative yoga is a recent addition to my treatment schedule.  A private instructor comes to the house and works with me on the bed.  I can incorporate this into my twice daily meditation/ rest time.  The instructor also gives me homework to improve my breathing and muscle strength.

e. I see a  psychologist regularly to ensure that I have support for depression, grief, and any other issues that might arise.  (It is amazing how much stuff comes up when you have nothing to do but lay around.)

f.  Pacing.  As mentioned before, this is the number one recommended approach to maintaining balance.  Limiting activities and stimulation is essential for staying out of the crash and burn cycle.

Sloane&Meg.  Social time is a very important part of keeping positive.  I have a few friends, as well as children, who visit regularly and are willing to lie beside me on the bed if need be.  My granddaughters are the best as they love to cuddle with Grandma.

h.  Writing is also an important part of my recovery.  To be able to remain passionate about something is a gift, and with today’s technology, even when my hands and wrists tire, I can dictate!

i.  Music and books on tape are the other stables in my regime.  Since my mind doesn’t allow me to concentrate enough for reading, I have found that listening to someone else read is a happy compromise.  Podcasts are even better, as they are often short and interesting.  Songza provides many playlists of mellow music for relaxing or meditation/yoga.  (Note: watching TV is not a good past time, as the combination of sound, visuals, and annoying commercials is overly stimulating.  If I do watch, I try to pre-record.)

j.  Games and apps.  Games that stimulate the brain are good in short intervals.  Magic Puzzles provides endless jigsaw puzzles that can be set at easy, medium, or more challenging.  ME/CFS Diary is an app that allows the patient to monitor patterns – this is excellent for tracking activities and symptoms to share with the doctor.  (I find it easier than filling out the daily paper logs).

k.  I have recently started taking short walks every day (five or six houses down the street).  The challenge with this (and any exercise) is making sure that I do just enough to make a difference without setting myself back.  This is still in the trial and error stage.

I hope this discussion of ME/CFS has been helpful.  I welcome comments and further discussion, and would like to reiterate that I am speaking purely as a layperson, and not as a medical expert.

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Day 193 “Character Counts”

I knew something was wrong the week before my granddaughter’s first birthday.  Despite the increase in asthma medication, I was not able to get my breathing under control.  On the day of her celebration, I was in Emergency, then back home with Prednisone: the wonder drug.

This summer was more active thanks to a new home with a pool and within walking distance of a park.  Our new lifestyle felt promising, especially the fact that we were entertaining more, and enjoying the great outdoors.  Thor was still recovering from a spring full of surgeries, so his movement was limited, but he too felt more positive.

By July, the pain in my body had increased, but I told myself:  No pain, no gain, and pushed harder.  Isn’t that how the body works?  When record high temperatures hit mid July, I decided that was to blame for my troubled breathing.

The Prednisone didn’t work, so I continued to up my meds and rationalized that once the frost came, everything would be better.

Soon school was back in and with it the onslaught of germs.  I constantly felt like I was fighting something, and then one day, standing talking to a peer, I felt faint, unable to breath, and was sweating profusely.  I called the doctor.  An xray showed pneumonia.  A bout of antibiotics and I would be good as new.

Except, I wasn’t, and my breathing became more and more laboured and the dizzy spells continued, and the sweats, and I found myself back in Emergency and on the wonder drug again.  Twice, with no effect.

By December, the doctor decided that maybe this wasn’t asthma, and began to treat me for COPD, and arranged lung tests.  Nothing.  So, I went for heart tests.  Nothing still.

No, it’s asthma!  declared the lung specialist and he upped my medication, stating he would see me in two weeks.

In the meantime, I felt more and more like I was swimming against the tide, through thick, debilitating muddy waters.

I just want to be able to breath again!  I told him on my next visit.  To be honest, none of these meds are making any difference, and I am fed up!

Now I like this doctor just fine, but he has a undeniable sense of self-importance and on any given occasion is prone to answer his own questions before hearing my response, but this day he stopped and looked at my file.  Really looked at my file.  He went on-line and looked back over all the tests, and former tests and diagnosis, and sat back and looked at me with renewed interest.

You have Fibromyalgia, he said, as if realizing it for the first time.  This is not asthma.  This is Chronic Fatigue. 

Chronic Fatigue Syndrome.  My family doctor had mumbled it questioningly months before, then dismissed it in favour of further testing.  I can treat your lungs, he said, but it’s back to your family doctor for the rest.  

So, there it is.  A diagnosis.  Eight months of struggle, exhaustion, self-doubt, and frustration, and here is where I land.

There is relief in knowing what I am up against, but there is also an enormous sense of disappointment and a bracing myself for what is to come next.

Chronic Fatigue Syndrome, like Fibromyalgia, is an unknown that draws at best blank stares, but mostly, misinformed advice.  I brace myself for what lies ahead.

As the criticism, and ‘you shoulds’ rolls in, I realize that I will need clear boundaries, and the ability to deflect the controversy.  Now more than ever, I will need to walk with my head held high, choosing the path that supports me best.

Now is the time that character counts.

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Day 149 “Meridians”

By the time I took myself to Emergency, human touch was unbearable.  I could get no relief from the swelling that affected me head to toe, and my heart was continually racing.  Emotionally, I felt out of control:  cranky, teary, and desperate.

The heart palpitations got me admitted directly, but the tests they ran showed the problem was not my heart.  An IV drip was started, but the painkiller they were infusing me with did not touch the pain. Two doctors came in and touched me in certain places, setting off cries of agony.

“Your blood tests showed that your liver counts are out,”  one young doctor explained.  “We don’t know why that is, but it is consistent with someone experiencing your level of pain.  We suspect you have fibromyalgia, but you will need further tests.  We are referring you on to Urgent Care.”

A battery of tests and doctors followed, checking my kidneys, my heart functioning, and so on.  Always the liver counts came back as suspicious.  No explanations.  Fibromyalgia, each doctor deduced.

“Take pain medication,” the Internist said.

“Your heart can’t tolerate pain medication,”  the Cardiologist countered.

“Go see Dr. Li,”  a good friend advised.

I called Dr. Li.  A tiny, Chinese woman, half my size, Dr. Li had a reassuring presence.  She listened intently, and asked specific questions.  “I don’t know fibromyalgia,” she said in her broken English.  “I will check your meridians.”

I held something in my left hand, while Dr. Li ran a rod connected to a computer over my right hand.  The machine squealed and reacted as she clicked buttons, and read the computer’s reactions.  At the end, she handed me a printout.

“The body has many lines of energy flow,”  she tried to explain.  “This tells where there are problems in the flow.  Green is good.  Red means there are danger spots; yellow is chronic.”  I had two green lines; my printout was a sea of red and yellow.

“Each imbalance is scored 1-4.  A four means you already have cancer.  You do not have a four, but your numbers add up to four.  Not good.”

Thus I began my course of treatment – weekly acupuncture, a drastic change in diet, and cleansing with Chinese herbs.

My health improved.

I continued to see specialists, ensuring that I wasn’t missing anything.  A year after starting my treatments with Dr. Li, they found the abnormal cells aggressively growing in my right breast.  Surgery followed.

I asked Dr. Li about it.  She confessed that she had been a medical doctor before coming to Canada, but that she found that by the time traditional medicine finds something, it is usually too late.  She prefers to work on preventing disease, where she can actually help the patient.

I escaped the threat of cancer with only a fading scar to remind me, and I credit my work with Dr. Li.  Her knowledge, combined with an uncanny instinct for what a body needs, promotes well-being.

It’s all in the meridians, apparently.