Getting Through A Connective Tissue Disorder Day

My embolistic hit brain needs things laid out clearly or panic, vertigo and unending uneasiness set in.  I sit down then, put my head in my hands or lay down under the window and become immobile.  At least I want to.

My Connective Tissue Disorder Life Day-Bloom

Many times the lack of clarity leads me to wander around the room or house through a confusing mental fog.  I need structure and order during my day.  I need an easy to understand roadmap that helps me keep moving forward, something to held avoid the confusion stroke related dyslexia and ADHD brings.

So when I lay awake at night staring at the stars out the window, I see my day and my week and the year in the form of a big circle, like a clock, probably due to looking at clocks now for fifty seven years.

Even fresh ground coffee in the French press does little to clear out the fog.

But pictures so help.

Since I love flowers I thought I would take the 'clock' concept of a day and turn it into a blossom, a bloom, a 'day-bloom'.

I have printed my day-bloom out and attached to the kitchen refrigerator.  The kitchen refrigerator is an important place to me because it is where I usually end up after wandering around wondering.

When I open the stainless door a flood of bright light rolls out of the cold ice box.  I usually stand still for several minutes mesmerized by the potential snacks and cold air enveloping my feet.  Then the thought of sardines in the pantry and the humming sound of the refrigerator compressor kicking in shakes me out of my zombie like state and I shut the door.

Now my day-bloom will be there, right in front of my face to remind me of what I think I need to be doing.

Yesterday while riding in the vehicle with a friend I kept falling forward and couldn't keep my eyes open, probably because events of the last couple months have given me an excuse for not focusing on my day-bloom schedule.  Remembering the doctor has told me that my number one job was to 'stay alive', I am going to try and stick to consistent physical therapy, exercise and rest.

Using pretty pictures is more fun than a bulleted list.

I can't even seem to keep my eyes open to write this post and it is only 10:20 am.  Struggling with the side effects of the meds controlling a barely beating but loudly beating heart when it is behaving is tough.

Now, life seems like  it may contain only a few really important things; like family, friends and Love.

My day-bloom reminds me of this.

Even when I do not have my reading glasses with me.

Because I can see the hearts and the smiling sun.  And one more smile for me.

The Chronic Fatigue Beast and Marfan Syndrome

Chronic fatigue (CF) is a cruel beast I face off with each day.  Some days I win.  Most days the fatigue succeeds in siphoning away any energy I woke with and I want to crash.

Chronic Fatigue and Marfan Syndrome

To those of you who have experienced chronic fatigue this note doesn't shed any new light on the relief of symptoms.  I have tried everything the doctors and my friends have recommended and ended up with no significant relief.

And I can't find any Vitameatavegamin in Palm Coast stores.  (If you have never watched this I Love Lucy episode you are missing out on so may laughs.)

Maybe you are not saddled with chronic fatigue.  If so, rejoice and let us all hope your good fortune continues.

Not sure you're experiencing CF?  Don't worry.  Once you've experienced CF you will know you've been there.  No doubt.   Chronic fatigue is not the normal ups and downs associated with everyday life nor does CF go away with rest.

CF manifests itself in my life with many of the same apparent symptoms as depression.  Some days others assume I am depressed or 'down in the dumps' because of delayed responses to questions or lethargic appearance.

Coffee sometimes helps me for about three or four minutes.  Other times the java won't even begin to help with the apathy.

Last week I rode to Sarasota with two others, the first lengthy long road trip since my dissection surgery.  We left early and the van was quite comfortable.  However once we reached our destination around mid-day I was so exhausted that I sat down on the concrete pad we were gathered on, leaned back against a post and closed my eyes, ready to pass out.  One of my traveling companions who knew about my health issues walked over and took me back to the van.  I had been overwhelmed with a desire to lie down and let the exhaustion envelop me like fog on a wet, humid morning. I wanted to give in to the CF beast and let it devour me.  I did not care about anything but closing my eyes and sinking into the mental and physical fog. On the trip back my memory issues manifested themselves as they do occasionally and I could not remember names.  Two or three days follow up rest were needed to recover from a simple road trip.

Doctors say exercise can improve circulation and stamina and help prevent CF.

And for sure I try to exercise.  Walking, swimming and stretching keep my heart in 'crawl forward' mode and out of park or reverse.

According to Mayo Clinic, chronic fatigue has eight official symptoms.  I am sure there are others.  The eight CF symptoms are:

• Fatigue
• Loss of Memory or concentration
• (Persistent) sore throat
• Swollen lymph nodes in the neck or armpits
• Unexplained muscle pain
• Pain in joints without swelling or redness
• Strange headaches
• Unrefreshed sleep
• Extreme exhaustion lasting more than 24 hours after mental or physical exercise

Mayo Clinic also suggests three possible causes for CF, including;

• viral infections
• immune system problems
• hormonal imbalances

I think the mixture of beta-blockers (Metoprolol), blood pressure medicine (Losartan), Coumadin and other medications may be partially responsible for my chronic fatigue.

Because my descending aorta is dissected from the ascending Dacron graft down into my legs, the doctors keep my pulse below fifty beats per minute.  A slower heart beat means less oxygen available to muscles, organs and my brain.

Additionally, my heart output function has been calculated to be around twenty or twenty five percent according to my cardiologist.  Trauma from multiple surgeries, new valves and synthetic aorta material make my heart's job exponentially more difficult.

Interestingly, though existing literature on the topic is insubstantial, I have found that as my PT-INR rises significantly higher than normal, my fatigue also increases exponentially.

Though the medical profession has not definitely determined specific causes responsible for CF, chronic fatigue is real and debilitating.

Many of those challenged by Marfan Syndrome and other connective tissue disorders must not only adapt to weakened muscles and joints, scoliosis, leaky heart valves and aneuryzed cardiovascular tissue but also cope with continued depletion and exhaustion.

CF has opened my eyes to better understand what a zombie's life is really like.

Though I believe chronic fatigue is not the same as depression, I do consider CF to be a primary cause of situational depression.

As mentioned above, there is no doubt when one is faced with chronic fatigue.  Like I tell people when they ask me how I knew my aorta was dissecting, "there is no doubt', the same holds true for CF.   I'd add the following symptoms to the above list:

• regular inability to breath deeply enough to fill your lungs
• driven need for multiple short naps during the day
• unusual weight gain or loss
• lack of motivation to participate in activities one normally is interested in
• when placing a phone, sending a letter or writing an email call to a family member or friend becomes seemingly overwhelming from an energy perspective
• and others.

I fight the CF beast every day.

Though it would be so easy to give in, close the blinds, turn down the thermostat a couple degrees, crawl under a quilt and go to sleep, I am not willing to surrender yet.  I will not willingly become a zombie.

When my son asks  if I will go to the skateboard park with him I go.  When my daughter says, 'Dad, let's go to the grocery store to buy a gallon of milk' I ride with her.  When my wife asks if I will go to the beach with her, I go, even with the CF beast hanging on my back, beating on my head and biting my neck.

My battle plan is simple.  I'm first going to learn what circumstances invite a CF attack.  Journalling about daily activities is the best way to establish CF patterns and trends.

I know I must continue to exercise.  However when I stand to walk outside and my ankle feels as though it is falling apart, the pain invites fatigue and fatigue then invites lethargy.   Even so I make myself walk or swim, even if it is only for a very short duration.

Healthy foods are important too and this is an area where I am diligently journalling and researching in an attempt to find food patterns and their respective relationships with chronic fatigue and connective tissue issues.  Potassium, phosphorous, saturated fats and certainly sugars all have shown themselves to be somehow related to my CF incidents.

Understanding the CF beast will be a journey across time and one without a clearly defined destination.

Unfortunately there are no easy answers.

Rest is not the answer.  Though daily rests provide respite for my mind, most naps I take produce additional physical fatigue.  I usually wake up so much more tired than when I was before I went to sleep.

Cutting back on medications is not an answer either.  Beta-blockers and blood pressure medications keep me alive.  I have changed medications before and this route has not provided real CF relief.

Exercise and diet may hold promise.  As I learn from food patterns I will update the post here.

In the meantime, I am not giving in to the CF beast.  I am not going to become a zombie.  I am going to beat the beastie fiend as soon as I find the energy to do so, or locate some vitameatavegamin.