A Determined Spirit (Dominique’s story of learning to live with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS))

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A few months ago, I stumbled on Dominique?s Blog (4 Walls And A View) and was drawn to her warmth, passion, courage and determination to live life each day with a clear purpose of inspiring people living with CFIDS & FMS.

Today is ME/CFS Awareness Day and it?s been a great privilege interviewing her.

Please Note: This is an edited version of the interview. The next edition of Well Being Magazine would contain the full transcript.

The Interview

Kindly tell us who you are

I am Dominique Small.

What are the things you love doing?

I?m someone who is creative, loves reading, writing, watching movies, seeing ballet performances, playing scrabble, dabbling into photography and cuddle with my pug, Dekker.

Have you got any favorite movies, songs or programs?

My all time favorite movie is ?The Net? with Sandra Bullock. I love the way the movie is as pertinent today as it was when it came out.  Phantom of the Opera is another movie that I thoroughly enjoy watching over and over.

Worship music is my absolute favorite while R&B is a close second.  I also love jazz and instrumental music. 

Any favorite food/meal?

I love French food, ?real? Indian food (the hotter, the better!) and a wild caught Alaskan Cod or Halibut! 

My all time favorite restaurant is PF Chang.  When I want to eat out somewhere nice, that is where I go!

Tell us a bit more about your experience in the Air Force?

I entered in 1981 under ?delayed enlistment? and went into basic training in Texas in 1982.  My first assignment was in England at Bent waters AFB, I loved my tour there and the British people were amazing. England also holds a special place in my heart because my daughter was born at Lakenheath AFB in 1983. 

My next assignment was Randolph AFB, in San Antonio, Texas. I was stationed with the 12 Student Squadron where we trained pilots to fly and my last assignment was at Hanscom AFB, in Bedford, Massachusetts.  I actually worked two different jobs while stationed here.  I worked as a para-legal in the Legal department and as an Administrative Assistance for the Fire Chief at the Fire Department.

Most of my family lived in New England, so I was able to see them while stationed here.

What is Chronic Fatigue Syndrome (CFS/CFIDS), Fibromyalgia (FMS) in simple terms?

Chronic Fatigue Syndrome is the body?s inability to recover from exertion, usually referred to as ?post exertion malaise.?  The fatigue, which is a common symptom of the illness is a pervasive, penetrating type of exhaustion.  

CFIDS/ME sufferers are constantly bombarded with headaches, fly-like symptoms, pain, cognitive problems, confusion, memory and recall difficulty, an inability to concentrate, as well as, sore throats, swollen and painful lymph nodes etc.

It is not unusual to discover that one has had a major decrease in their IQ as a result of the horrendous impact of this illness on one?s cognitive capabilities. 

Although many CFIDS/ME patients are often seen as merely depressed or faking, it has been often said that CFIDS/ME patients are as sick as someone in the last two months of AIDS.

Fibromyalgia, on the other hand, is an illness in which the patient experiences widespread pain, tender points in joints, muscles, and other soft tissues, as well as, stiffness, sleep disturbances, headaches, numbness in hands and feet, depression, anxiety and more. 

Most people diagnosed with this condition have multiple trigger points throughout their body.  When a certain amount of pressure is applied to these areas, severe pain is caused.

Could you share your experience on living with Chronic Fatigue Syndrome (CFS/CFIDS), Fibromyalgia (FMS)

After 20+ years, I?ve learned to handle FMS well through chiropractic treatments and herbal products, although severe flare-ups of pain, sometimes end up in the Emergency Room and I?m given shots to get the pain under control. The last visit ended with having 3 injections to get the level of pain under control.

The CFIDS, is much more challenging because every single day, I?m confronted with fatigue which isn?t your ordinary run-of-the-mill type of fatigue. It is a profound, penetrating, invasive, completely wiped out kind of fatigue.

I also suffer from severe cognitive difficulties and struggles recalling things, especially in situations where the information is demanded on the spot.

Is there so much awareness created about (CFS/CFIDS)

There is a lot more awareness about the illness today, but I?m amazed at the number of people who haven?t heard of it or know it?s impact. Even doctors ask what it is? This tells me we need to do a better job in creating more awareness.

Additionally, some of those involved in research and the medical aspects of this illness, need to start trusting those of us who are affected by it.  We live with it daily, KNOW what is happening in our body, see how devastating those affects are.

I personally believe a cure would come faster, if all involved in the process of finding the cure, would start with the assumption that CFIDS/ME is a real, serious, and life impacting illness.

Today the 12th of May is the Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) Awareness Day, what?s so significant about it?

As I stated above, the significance of May 12th is to bring about understanding of these devastating illness, which will in turn, bring about a concerted effort to find out the causes and ultimately restore the quality of life that has been robbed from those of us who suffer daily as a result of these illnesses.

The end goal, for each and every one of us is simple ? to get well.  We long for the day that we can return to our lives and once again become individuals who are able to fully contribute to our families and our communities.

What?s your typical day like?

 On a ?good day,? which basically means I have approximately 50% of my normal energy levels, I get up and feed my pug, Dekker his breakfast, make my cup of tea, sit down  pray and listen to some praise and worship then do one chore for the day like dusting.  After that I rest for an hour or so and then take my shower then rest for a while. 

I usually take Dekker out for his morning potty break and if I am up to it, we will take a 5-15 minute walk.

 At 1 p.m.-ish I write a post for my blog, 4Walls and A View which usually takes about an hour,  make myself dinner (something simple like steamed vegetables, a piece of grilled fish, and a salad), then leave the dishes for the morning because I would have come close to the end of my energy levels.

I get back to bed and answer emails, texts, blog posts, etc, until about 8-10 pm and then go to sleep till the next morning where I start the process all over. My body now dictates what each and every day will be like. 

What has kept you going strong for 20 years?

The belief that I have a purpose.  I believe God has a purpose for my life and that I am not here by accident because I must be on earth but for a reason and nothing can change that, not even CFIDS/FMS.

I have also learned over the years to focus on what I can change instead of what I cannot and I take a daily inventory of the many blessings, good things I have in my life such as my daughter, and now my beautiful grand-daughter.

It?s all about perspective for me.  I can choose to have the best life I can within the boundaries of these illnesses, or I can choose not to. 

Lastly, I choose daily to forgive myself when I am having a bad day or become snarky. I can still be real and honest about my short comings, but don’t allow them power to determine my future.

What motivates or gives you inspiration?

Wow! That is a great question.  This innate sense in me that I was created for more than this and a deep desire to positively impact other people?s lives letting them know ?all things are indeed possible.?

The world might throw things at us, shake the foundations of our beliefs; however, those issues only have as much power as we give them.  Sometimes, we need a reminder that obstacles in our lives are just that ? obstacles and they can be overcome.

What is the concept behind the possibilities book?

The concept behind my possibility book came from the movie, ?Last Holiday.?  It is a reminder that ?all things are possible?.   Whenever I find my hope and motivation dwindling, I just take a look at my possibilities book. 

Have you been able to achieve anything on the list? 

No, but isn?t that part of the fun of having the list. My goal isn?t to rush and accomplish everything on the list this week, but to set them as a reminder of where I am heading and what is truly possible.

Several of the items on my list are ?in the process? of being accomplished such as getting down to a size 12 (I have dropped 2 dress sizes since the New Year), learning to take incredible photography (I have recently started working with black and white photography), and spending more time with my daughter/grand-daughter (I will be visiting my daughter and grand-daughter in August as my daughter is getting married!).

I am also working on a book of poetry, and working towards living my live with a ?cup half-full? perspective, as well as, living a life of ?no regrets?.

Tell us more about your poetry?

Much of my poetry has been born out of the pain of isolation and aloneness. Unfortunately that is a characteristic of the illness. When I first got sick, people didn?t believe the symptoms were real and my way of coping was writing poetry.

It was my way of coming to terms, not only with the illnesses, but with the lack of compassion and understanding I kept running into from the medical arena, to friends, family and even churches.

Fortunately, I have seen a vast improvement in understanding and compassion in the last several years in all of these arenas.

As a writer, it is often much easier for me to give life to my feelings, thoughts, and emotions by putting pen to paper.

One of my favorite quotes about writing is by Cervantes who said, “The pen is the tongue of the mind.”   For me, that is so true.

From your life experience, what would you say to someone living with CFS/CFIDS needing encouragement, or someone else just feeling low and not motivated?

I believe relationships are the most important tool for those suffering with CFS/ME/FMS.  The ability to understand another?s struggle because it is your struggle, is incredibly powerful.   We have the ability to support and cheer each other on, as we all walk out this journey we have unwittingly found ourselves in. 

For those who aren?t struggling with these illnesses, I would say, you have this innate ability to choose your destiny.  Life isn?t always fair or nice, but if you grasp the power of choice, your abilities and capacities become endless. 

What would you say was the most memorable experience you?ve had for now?

The birth of my daughter and grand-daughter.

How and why did start blogging?

I actually started blogging to ?write what I know,? which is living with CFIDS/FMS and also wanted to be a vehicle of inspiration to those with these illnesses, and create an awareness for those who don?t. 

Additionally, I want to create a written record of what my life is, living with CFIDS/FMS.

If there was one phrase you could come up with what will it be?

No matter how difficult the journey is, it is your choice how you complete it.

What do you enjoy most about being Dominique?

The ability to impact the lives of others and the world around me, for the better.

In a sentence who is Dominique

I?m a woman who unwittingly found herself on a journey named CFIDS/FMS, but is determined through faith and choice to finish this race with grace, tenacity, passion, determination, and purposed intent.

Any final words or thoughts for everyone please?

Life is often not fair/easy but you can live a life of purposeful intent, move forward and accomplish your dreams and goals.

Ayo: Thank you so much Dominique for taking time out to respond to all the questions. You are doing a fantastic job and several people acknowledge and appreciate you for it.

To anyone living with CFIDS & FMS please check out Dominique?s Blog for useful information. If you blog on living with CFIDS & FMS, kindly leave a comment with links to your blog.

For professional advice on living with CFIDS & FMS in the United Kingdom, please visit The ME Association.

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