June 2011 ME Story: Linda

I remember the precise moment it struck:  June 9, 2007, shortly after 10:00 a.m.

It would be identified a couple of years later as Chronic Fatigue Syndrome (or CFS for short)

Backing up a bit to mid April of that year, we were following our dream to live on the east coast of Canada.  We wanted to live near the ocean.

In the midst of tying up the loose ends in order to make this a reality, we received word my brother-in-law had passed away and that my husband was named to look after his affairs.  Our own move entailed packing up and moving five provinces away (about 1500 miles) and now we had two homes to pack up.

We had deadlines in place for our move (when to vacate our house, moving company booked, ferry dates confirmed) which meant we had to stick to very tight schedule.  Packing up one home is enough, but two at the same time was more than we’d bargained for.

Before the onset of CFS, I thrived on details.  This weekend would be no different and I had it planned to a T. There were five of us, my husband, our eldest son (14), our daughter (12) and our youngest son (9).  I’d planned and premade food to cover all the weekend’s meals.  The three hour drive to get there meant we had to be packed and on the road by 6:30 a.m.  After all, there was a lot of work to be done and we had only the weekend to do it.

The weekend went according to plan. Everything was on schedule right down to the house being cleaned/cleared out, as well as, the caretaker and realtor arriving at their pre-arranged times.

Little did I realize that as we worked outside with the realtor trying to locate property markers, my life was about to drastically change.

As I stopped to look around, a  “sensation”  shot up the left side of my neck, then up the back of my head, which spread to the top, down and across into my forehead.  That resulted in a weird kind of a headache.

Not giving it a lot of thought as I was certain it was from doing too much or perhaps being out in the sun, and with so much to be done, I popped a couple of ibuprofen and continued on with our busy schedule.  The headache continued on the rest of the day, relieved only for four-hour periods and the taking of more ibuprofen.

I later thought a good night’s sleep would surely relieve it, but it didn’t … it only became worse.  In addition to the headache, there was now an extreme, strange kind of fatigue setting in.

Still not giving it much thought, I continued with the ibuprofen and pushed on.  Pushing on – I would later learn – was the worst possible thing I could have done, but as a type-A personality that’s all I knew.

At the end of the weekend, we returned to our home to continue on with the duties there.  My husband went back to his stressful job in Toronto, I continued homeschooling our three children as well as packing up our home.

That now infamous headache continued to get worse, as did the fatigue.  I was now feeling similar to how I felt during a prior bout with mononucleosis, only this was worse.

The fatigue would be better described as weakness.  The ibuprofen minimally numbed the headache pain, and did nothing for the extreme weakness.    No amount of sleep helped.

In fact, the more I slept the worse it seemed to get.

I was used to always pushing on so this is what I did.  I only wish I knew then what I know now about how detrimental pushing ahead is to someone with CFS, but as they say hindsight is 20/20.

I continued on with my routine:  taking a couple of ibuprofen, waiting 15 minutes, and then dragging myself out of bed to pack a few boxes.

When the excruciating headache returned, I would gladly crawl back into my bed where I’d sleep for varying amounts of time.  I’d repeat this pattern, day after day.  I continued to grow weaker, requiring more sleep and never feeling refreshed – only worse.  And that headache got even more unbearable.

I became increasingly frustrated with myself.  We had so much to do.  There was no time for being sick and wanting to sleep so much.

I had never experienced anything like it and really didn’t know what to do.  I didn’t realize how bad it was until one day, my then 9 year old son came into my room.  I was passed out from the exhaustion and didn’t hear him entering.

It wasn’t until he climbed up on my bed and was gently shaking me, calling my name while trying to wake me up.   As I came to, he was close to tears. With his face about two inches away from my face, he said,

“I’ve brought you my favorite blanket from my bed”, (which he had covered me up with).

“I’ve brought you Kangaroo Jack.” (His 2 ft high stuffed kangaroo animal that he’d placed beside me underneath the cover).

“I’ve brought you some Tylenol and a glass of water.” (Which he had placed on the night stand beside my bed)

As he pushed the hair back from my eyes as he said,

“Mom, I’ve done everything I can think of to make you better.  You’re not going to die on me, are you?”

It was then, I realized I was very sick and how noticeable it was to my family.  Not knowing what to do, I consulted a chiropractor for the headache.

Having had previous success with a chiropractor for headaches, I figured this was the way to go.  If I could just get this mind-blowing headache to stop that would be most of the battle.

The chiropractor did, for the most part, help with the headache.  It did return occasionally, but not nearly to the extent it had been.

The weakness and fatigue, however, continually worsened.

When we finally loaded the last items into the van, I remember thinking,

“Great! 1500 miles … I’ll be able to rest.  Surely, I will be rested by the time we get there.”

Of course that did not help.  I continued to grow weaker.

I tried everything -

I tried ignoring it as best as I could.

I tried exercising more (again, I’d later learn this was a huge mistake that made my condition worse).

Nothing was working …

This pattern continued for several months and by the following January, I was so weak that getting from the bed to the chair in the living room was a huge challenge for me.

My husband and children were picking up all of the household details – and I do mean all of them.

I felt guilty for shirking my responsibilities.  I thought I was being such a wimp; yet, I could do nothing but give into this extreme and debilitating fatigue.

In addition, my body was now starting to swell.  My stomach swelled to nine month pregnant proportions, as well as my legs, my arms and my hands.   My clothes no longer fit and my wedding ring needed to be cut off.

Eventually, my left arm became so sore and swollen, I could not lift it higher than a 45* angle.  My whole body hurt, even down the sides of my body, which were extremely sore to the slightest of touch.  I also had extreme brain fog.

About this time, my father and step-mother made the 1,500 mile trek from Ontario to Newfoundland to pay us a surprise visit.  I was so fatigued and weak I could hardly get off of the couch or stay awake long enough for a decent conversation.  While they played dominoes with the kids, I was more than happy to spend that time sleeping on the couch.

As my arm got more painful and I could no longer do tasks such as washing my hair, I decided it was time to seek medical attention.

As I tried to explain my symptoms to the doctor it became evident she did not want to listen.  Being in a hurry to diagnose me, she announced I had frozen shoulder and would require physiotherapy.  I tried to protest this diagnosis, but she was not interested in listening to me and I was too exhausted to fight.

Feeling quite sure I did not have frozen shoulder, I went for physiotherapy anyway.  They were wonderful and not only worked with me, but listened to me.

After measuring my arms, it was they who discovered my left arm was in fact swollen and 1.5” larger than the right arm.  As it continued to swell, they felt another diagnosis was in order (swelling of the left arm like that can be a sign of breast cancer).

Back to my doctor I went (thankfully, my original doctor was off on maternity leave).

This in turn set off months of being sent to various specialists and lots of tests.  I had a mammogram, ultrasounds (checked all my internal organs) and x rays.

I visited a gynecologist, a general surgeon, a neurologist.  I had a lot of blood work done.  I had a scope put down into my stomach.

The tests and doctors seemed endless and everything came back clear. Sometimes they would not listen to me or tell me I couldn’t be experiencing those things.

I was very discouraged and frustrated.  I also continued trying to push ahead, all the while, getting worse.

I often wondered if I felt so sick and weak, then why was every test coming back normal?   Was it all in my head?

I had an upcoming appointment booked with an Internist and even though it had been booked for some time I considered cancelling it.  I mean, what was the use?  I was beyond frustrated and to the point of thinking whatever I had would either kill me, or, I’d get better on my own.

I saw no need for any more doctors.

Today though, I am very thankful my husband encouraged me to keep that appointment as it would be a turning point for me.

Wow!

Finally, someone who got what I was saying!  He nodded as he listened to me.  He could tell me where my body hurt before I told him.  He knew my symptoms.  HE GOT IT!!!

After examining me and listening to my explanations, he said these words,

“I think you have Chronic Fatigue Syndrome.”

I recall thinking, Chronic Fatigue Syndrome?????

No!  I am too sick to have Chronic Fatigue Syndrome.

I mean, the name suggests being tired, but what I had was sooo much more than that.  *One of the first things I would later learn about this illness was how very poorly named it is.

The doctor ran more tests to rule out anything else it could be.  The final diagnosis was:  Chronic Fatigue Syndrome.

With a name to this thing, I could now start researching.

Wow!  On my first search attempt, there were my symptoms listed before me on my computer screen.  The tears flowed.  Finally, it had a name and it was not my imagination.

It was at this point where the good news ended in regards to the traditional medicine approach.  Delivered along with the CFS diagnosis was the message: this was the new me and I should get used of it.

Hmmm…even though I was so sick there was still a bit of that type-A personality left in me, thus, I was not ready to give up so quickly.

Again, I began researching.

On-line, I met many wonderful people who also suffered from CFS.  They gladly shared with me what worked for them as well as what didn’t.

They suggested things that might work for me and they pointed me to the best articles and books to read.

Additionally, at the suggestion of a local woman who also suffered from CFS, I started visiting a homeopath.

Through these avenues, I started to make gradual improvements.  The brain fog started to diminish, therefore, I was able to research more, which in turn allowed me to make more lifestyle and diet changes.

The improvements kept coming and so I started to add exercise in.  I thought I was on the road to complete recovery.  Not so fast!

Unbeknownst to me, adding in the exercise would turn out to be a huge mistake!

Amazingly, this exercise was not a huge amount of exercise…only walking.  I was walking on an indoor track one day and did one lap too many.

I should have stopped after two, but determined as I was … I kept going.

I knew instantly that I had pushed too far.

I could barely make it home, and when I did, I collapsed in bed.

For the next couple of days I was barely awake and often could not be awakened.

Eventually, I came to.  However, the all-over body aches and extreme muscle weakness were too much.  I spent the next month not only house-bound but also mostly bed-bound.

The pain was excruciating.

Each day I spent hoping this would be the last day I felt like this.

It wasn’t.

This continued on for a month.   I knew I needed help but was unsure if I’d have the physical energy to get to a doctor.  Despite that, I mustered all the strength I had and managed to secure a spot (thank goodness for cancellations) with the internist who first diagnosed me.

I typed out a list of my symptoms, sending one off to my homeopath and printing another for the doctor.

The doctor was not interested in my list.

He actually seemed almost annoyed I had come back.

A quick once over resulted in a further diagnosis of fibromyalgia, in addition to the CFS he’d previously diagnosed me with.

This resulted in another prescription of pain meds along with that same talk which translated into,

This is the new you…welcome to it and get used of it.

Upon returning home from the Specialist, and much to my surprise, an email from my homeopath was waiting for me. She was more than interested in my list, so much so, she consulted with the Senior Homeopath in her office.

Together, through tests etc., they put together a regime to help they felt would help me.

And help it did.  Most of the new symptoms disappeared – rather quickly – for which I was extremely grateful and happy.

I am thankful to my homeopath.

We continue to work on my symptoms and while they are gradually reducing, they do still persist. I can’t help but wonder if I’d been diagnosed earlier and started treatment earlier, would I have experienced more recovery at a quicker rate?

Although I have made great improvements from where I started, I continue to struggle with CFS on a daily basis such as the all over body aches, the burning muscles, the weakness, the fatigue, and the brain fog.

More importantly, I have had to modify my life.  I must pace myself and my life.

I must incorporate time to rest up (save up) my energy before an upcoming event, together with planning on a day of rest for the day after.

I have had to give up many things that were once important to me.

Unfortunately, my family has taken – and continues to take – the brunt of this illness as I am no longer able to be there for them as I’d like to.

My hopes

I’d like to see the public better educated about these diseases.

As for the name … who on earth came up with it and why do we continue on with it?

I’d like to see the stigma that goes along with this illness, abolished.

I would like people who have CFS feel free to say they have CFS, without fear of ridicule.  (The same way someone with a heart condition or cancer can state their illness without worry of it being dismissed as all in one’s head).

I would like to be able to stop having to come up with creative excuses for my symptoms.

Conclusion

I feel fortunate for the work that my fellow CFS sufferers have done in moving this illness forward (the public awareness and in the medical community, etc.).

I also feel fortunate to have met these wonderful people and for their help in my journey … encouraging me and pointing me in the right direction for information, etc.

To all of you…I say a big Thank You!

Had I stopped at the get used to the new you talk, I’d still be struggling to get from the bed to the chair, taking my pain meds, and hoping for the best.

I feel fortunate for my relatively quick diagnosis (‘only’ 1.5 years which is quick for CFS).

Through all these avenues, I’ve been able to implement things that have helped me.   I am thankful for the improvements I have made and for being able to gain back a small part of my life.

Lastly, I am hopeful that a cure for this dreadful disease will be found and that not one more person will have to suffer.

Note:  Posted with permission by Dominique and Written by Linda Wescott