Post Treatment Blues - 21 days

Hair and Body Care

It has been 28 days since my last dose of Interferon alpha 2a and 21 days off the dreaded Ribavirin. Here are the updates of the lingering side effects from the Hepatitis C therapy:

Dehydration - no change
Dry eyes - no change
Myalgia - no change
Arthralgia - intermittent
Fatigue - no change
Insomnia - no change
Loss of Appetite - no change (loss 4 kg!)
Alopecia - no change (balding soon!)
Visual Change - not better
Taste/Noise/smell sensitive - no change
Lower backache - intermittent (thank God! at least one!)

Medicated Creams

These are the new developments from the heavy duty medications:

Temporomandibular joint and muscle disorders (TMJ) 
Tinnitus
Leukocytoclastic Vasculitis 
Degenerative Disc Disease

I have not been patient enough ... 

Since hair is still falling like crazy, even without taking medications and cut my hair short, I just cannot wait to get those gray clumps covered. Sorry to my scalp ... did an ammonia-free hair color just to boost a little of my self-confidence and image. I do not want to look not my age (older). Those were the days when I received lots of compliments that I did not look my age though (younger) and that was not too long ago. I need to find myself and hear again "hey! you don't look your age". No pain no gain.

Every morning I still wake up feeling like a 100 year old but now with an exceptional new symptom - ringing in the ears/head. It is like an electrical static noise, mini motor buzzing at the back of my head that does not have a switch. The moment I step into my room, it feels like I live in a forest full of of insects, crickets buzzing, whooshing. It never go away, not even with earphones or the sound of the fan. With the added pulsations or "internal trembling", vibration and buzzing inside my limbs, my nerves seem to be in over-drive. I guess I am sinking into isolation again, into a strange world.

The only time when the noise disappear is when I am underwater. What a relief! I have finally discovered my love for the sport which alleviates the Tinnutis!

My Tanah Lot Tour

Moved to dive ... me nuts 

My First Dive - Bali

Post moved to http://divemenuts.blogspot.sg/

Post Treatment - 1st week

Mount Batur

Everyone wished me well before I left. I wished too. This was supposed to be the time for me to recuperate and detox physically and mentally from the heavy medication and get-away from work. But as soon as I breathed in the air of Bali, my plans changed. I ended up in pain 24/7 just to fulfill my "unfinished business" of 10 years - diving and rafting. With a 2-hour flight delay, I only managed to checked in to Sun Island Kuta Bali at 2030 hrs. With too much sitting while waiting at the airport, on flight, it was the beginning of my holiday-in-pain. Something seemed to have gotten stuck in my mid back again and could not sleep a wink that night. 

Some may consider it a pity and silly to forget the most important things in a trip but I think it was a blessing in disguise. With brain fog, I forgot 3 things: did not activate my mobile phone auto-roaming service, ATM card and forgot to bring my narcotic painkillers. It was a good test for my tolerance level and frugality though. If I could do it this time, I am sure I will make it anytime. So ... my holiday begins:

Hand-made Batik

My first morning started with some sightseeing before reaching the main destination which is the Bali Volcano. Some of them are watching the seamstress hand-make and paint batik, Luwak coffee plantation, 1000 year old temple/palace and the gold/silver designing factory. I had my next 3 days itinerary organized with the freelance travel agent to get the most out of this trip. Next day was diving, followed by white water rafting and more temple visits on the very last day. 

Wearing a sarong at the entrance of the temple

The sightseeing tour would have been boring without the company of fellow Singaporeans. I met a wonderful couple whom we started getting along very well and were really in tune with each other.   We even met for dinner the same night but if I could tolerate the pain I would love to watch the band and continue chatting with them. The left side of my back was so painful I could not find a comfortable position to sit or sleep. It was another sleepless night in pain. But I had a great day.  My first diving experience will soon be posted in "My First Dive - Bali". 

Nusa Lembongan dive center

The white water rafting was my next best experience. The Telaga Waja river is known for its rough rapids with the level of 3 - 4 making it the most challenging rafting site in Bali. The 3 challenges we faced were hitting the rocks, cliffs and bamboo bridge. 

The most exciting is the last challenge that is jumping down from the dam with a height of 5 meters. Two times I got hit on my face and nose. The first time as we started, rapids were so rough we quickly hit the cliff. My paddle was pushed backwards direct at my shades. So my nose almost gone crooked. Then the boy in front did not hold on tight enough and fell backwards on my face! 

The most difficult part was not hitting rapids but climbing the 162 steps at the end of the ride. Being alone and helpless, I clung on our guide for support in order to reach the top. I almost gave up.

So far I have learned and understand more about my body. Activities like rafting, uses a lot of arm and legs muscles, sitting and walking. All this make pain unbearable and long-lasting.  But diving uses more spine strength as the body straightens while swimming. This is beneficial for core strengthening and a plus point for improving my Degenerative Disc Disease (DDD). Even the doctors encouraged it. If I were to include this activity in my routine exercise program,  my back problem should improve tremendously. What will be my next plan? A diving trip incorporating the PADI (Professional Association of Diving Instructors) certification open water dive course with hopefully 20 dives in 7 days.

I am so broke now that I had enjoyed so many adventures and discovery of Bali. Pity me ... I am left with 225000 rupiah (SGD28.75). Can someone DHL some nice food over? Or all I could do is to survive on instant noodle!

Tomorrow will be the Tanah Lot tour which ends my trip to Bali 2012. I will create another post as soon as I feel ready to write.

My Tanah Lot Tour

I'm Done!

24 weeks of physical and mental torture ... yet some of it still lingers on. Many a times I did falter, on the verge of throwing in the towel, when there was nothing else that's left except prayer, the Higher Power came to my rescue. I am not a staunch Christian, but just sticking to my faith and ask to have it given. It was given. I had hope and saw the light. Amen.

Interferon is Chemotherapy

I am so impatient to pamper myself when I finish Hepatitis C therapy.  After focusing too much on the other side effects of pain and frustrations of treatment, the next thing we look at will be HAIR. Something needs to done about my hair because it has been such a mess, graying, falling all over the floors, sink, toilet bowl, bed sheets, office desk etc... everyday is bad hair day. I almost went insane.  Finally went to cut it short only.  Fortunately, did not put any chemical on my hair  because the hair salon does not carry a gentle product. Did a google search on hair products for chemotherapy patients and found this: 

Interferon is used to treat several different types of cancer, particularly renal cell (kidney) cancer,malignant melanoma, multiple myeloma and some types of leukaemia. It is also used to treat diseases other than cancer. The Interferon we used have gone through a process called pegylation which extended its half life. Peginterferon alfa-2a is a long acting interferon. Interferons are proteins released in the body in response to viral infections. Interferons are important for fighting viruses in the body, for regulating reproduction of cells, and for regulating the immune system.

Read more ...

Especially for ladies and those contemplating or just about to start therapy, the links below may give you some suggestions about hair management.  Not everyone will suffer from this side effect but as long as your hair start to fall unusually , you should take some precautions and make your decision. It is a HUGE deal if you decide to have it shaved.  If you do not,  it is still a BIG deal.  There is no way to have the bald patches concealed.  It is not one patch but few patches on the front and top. I would never but if I have to do it again, I would shave my hair if my hair start to fall aggressively.

It was more distressing having bad hair everyday and watching and mourning over the loss of it than having it done at one GO. The links below are about hair loss or hair thinning caused by cancer drugs and how to cope with it. There is information about:

• Hair loss or thinning from cancer drugs
• Drugs that cause hair loss or thinning
• When your hair grows back
• Coping with hair loss
• Covering your head
• Reducing hair loss from chemotherapy (cold caps)
• Patient stories and tips

Another F word - Fibro Fog

Fibro fog has brought upon me embarrassment, became a laughing stock and something for me to laugh at.

How would you feel when you have a subject in mind, spent 10 minutes recollecting and wanted to put it down in writing. When I am in front of my blog I forgot what I wanted to post about!. When I could keep those trains of thoughts, I would quickly post as much as I could before it vanishes.

There were times I had difficulty to put words in a sentence, draft a simple memo or letter. Well, that's not me, at least not for a diploma graduate, worked with the legal department and years with MNCs. Where have all the proper terminology gone to? Back to books? If I were to read up and refresh my memory, will it help? No it will not.  Because it will disappear the moment I closed the book.

When people speak too fast (for me), I need to ask to be repeated because I could not read anything out of it at all! Sad to think of this that most may think I am stupid for a senior girl at my age, with my experiences and expertise. Sign ... how can I not accept the fact that I have been simply "slow" but not stupid yet. The fortunate thing is, it does not happened 100% all the time.  Sometimes, when I have more sleep and less pain, I can be faster than the train! My thoughts and words could be sound so profound and on a higher level than the listener.

My latest encounter was trying to count the number of Ribavarin pills to confirm the last day of my Hepatitis C therapy.  It took me 5 times to finally settle with the correct number.  How sad.  I think I am worse than the 5 year old kid.

Learn more about Fibro Fog

Osteoarthritis

Sometime after my 7th week on Hepatitis C therapy, my lower back pain amplified to the intolerable level that I had to be on pain management. I thought it was part of Fibromyalgia. The treatment medication is also known to cause inflammation especially for those with pre-existing conditions of the muscles, tendons or nerves. I was diagnosed after an MRI done for L4/5 as mild degenerative disc arthropathy which is also known as Osteoarthritis or inflammation of the joints. It sounds mild but with lots of symptoms and pain. The stiffness and pain upon waking up is so debilitating I wished I never slept. Some may have no symptoms or severe pain but could show much on an MRI. 

I had this pain for almost a year but was manageable with standard pain medication. After the office relocation, the pain got worse. I could not straighten my back after sitting for  20 minutes, could not couch, sit or sleep without pain. With the added "poison" into my system, I needed to cry for help and begged my doctor for the referral. It is sad that at only 46 years old, I feel like I'm 100 years old. Only the elderly would have such bone condition, that's what we always assumed. But cartilage wears off from age 45 and with the aggravation of other factors may contribute to early disc deterioration and breakdown of cartilage.  I have extracted some basic information on Osteoarthritis below for your reference.

As I travel along the treatment journey, I had became dependent on the non-standard analgesics for without it, I could never function. Doctor advised physiotherapy, light exercise or swimming on a regular basis to strengthen core muscles but when will they ever understand how tired I feel everyday?  How long am I going to continue to medicate? After completing my Hepatitis C therapy, I would still be on pain medication unless I make a change. Without anymore side effects, I shall be more vigilant to improve my physical ability. I have to do it because I have no one else to depend on in the future. I have to depend on myself.

Below is an extract article from Spine Universe:

Osteoarthritis: Degenerative Spinal Joint Disease
Part 1 of 3

Written by Edgar G. Dawson, MD and Christopher I. Shaffrey, MD

Osteoarthritis is a disease of the joints, and it can affect the spine (osteoarthritis in the spine is often referred to as spondylosis). Also know as degenerative joint disease, it is the most common form of arthritis, affecting more than 20 million American adults. It is a separate condition from and should not be confused with rheumatoid arthritis, another painful inflammatory condition.

Osteoarthritis is caused by cartilage breakdown; cartilage provides a cushion between the bones of the joints. Healthy cartilage allows bones to glide over one another and acts as a shock absorber during physical movement. In osteoarthritis, the cartilage breaks down and wears away. This causes the bones under the cartilage to rub together, causing pain, swelling, and loss of joint motion.

What Causes Osteoarthritis? 

While the process of spinal osteoarthritis is understood (as explained above), what causes this process to begin is not as well-understood. There are several risk factors that make it more likely you'll develop spondylosis, including:

• Age – osteoarthritis affects more people over the age of 45
• Gender – osteoarthritis is more common in women than in men
• Certain hereditary conditions such as defective cartilage and joint deformity
• Joint injuries caused by sports, work-related activity, or accidents
• Obesity
• Diseases that affect the structure and function of cartilage, such as rheumatoid arthritis, hemochromatosis (a metabolic disorder), Paget's disease, and gout

Signs and Symptoms of Spinal Osteoarthritis (Spondylosis)

Osteoarthritis usually begins slowly. Early in the disease, joints may ache after physical work or exercise. Often the pain of early osteoarthritis fades and then returns over time, especially if the affected joint is overused. Other symptoms may include:

• Swelling or tenderness in one or more joints, especially before or during a change in the weather
• Loss of flexibility of a joint
• Stiffness after getting out of bed
• A crunching feeling or sound of bone rubbing on bone
• Bony lumps on the joints of the fingers or the base of the thumb
• Steady or intermittent pain in a joint (although not everyone with osteoarthritis has pain)

Continue reading ... 

Osteoarthritis: Commonly Affected Joints Part 2 of 3

Osteoarthritis: Treatment Options Part 3 of 3

What Is Degenerative Disc Disease?

Degenerative Disc Disease and Low Back Pain

Anatomy of Degenerative Disc Disease

Symptoms of Degenerative Disc Disease

Causes of Degenerative Disc Disease

Exams and Tests for Degenerative Disc Disease

Alternative Treatments for Degenerative Disc Disease: Acupuncture, Herbal Remedies, and Prolotherapy

Chiropractic Care for Degenerative Disc Disease

Drugs, Medications, and Spinal Injections for Degenerative Disc Disease

Video Series: Exercises for Lumbar Degenerative Disc Disease

Physical Therapy for Degenerative Disc Disease

Surgery for Degenerative Disc Disease

Mindlessness

I never like to procrastinate. Honestly (don't mean to brag), I prefer to act fast and finish the project on my hands at the fastest pace I can because my time is too precious and my spoons are limited. I need to make good use of the good hours of the day to do as much as possible because after that few hours, I may lack the energy to even think. But it is a disadvantage to some extent. I invited unnecessary stress in order to push things through within a short time frame. I came across a forum that suggests mindlessness for those on Hepatitis C therapy and when life becomes overwhelming. If we apply a little mindlessness on a stressful day, it takes your mind off for a while and calm your soul. The chance to let someone else do something for you.

What is mindlessness?

About Me

Hi! My name is Dorelia, born and bred in Singapore. While I was struggling with the side effects of Hepatitis C therapy, there were too much thoughts and feelings I wished there was a place I  could vent and express, the only place I am validated. I stumbled upon some interesting blogs and that inspired me to create one. 

This blog is about my personal experiences battling Fibromyalgia, Hepatitis C and its treatment. During my Hepatitis C therapy, I was diagnosed with Degenerative Disc Disease and Vasculitis. When I look back on my life, years later and through this blog, it's going to be ... "WOW! Was it really me?" The memories of this strange journey are painted on my work of art, it will not be lost or forgotten. As the artist of this painting on my life, I will be filling up ugly holes and make it beautiful each day.

When I started blogging, it was already the 10th week of my anti-viral therapy with a foggy brain and juggling between a full-time job, personal life and struggling with the side effects of treatment. However, I will continue to improve as I go along.

For suggestions and comments, please do not hesitate to share it on Facebook at the bottom of each page.

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Happy reading!

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Why Can't I Make People Understand?

Discovering the Validation Those with Chronic Illness Seek and Why (Conquering the Confusions of Chronic Illness) (Paperback)
by Lisa Copen

Coping with illness can feel lonely, and exasperating as people cannot see the pain you are in. Coping with illness that is invisible has its own set of issues, as to most people "you look just fine."

"No one gets it!" we all exclaim at one time or another when we are coping with illness. But if you feel this way on a regular basis you may be in trouble!

Why Can't I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why gives you unique insight into why you crave the understanding of those around you when you are suffering with a chronic illness and helps you get past the frustrations you feel when people say things like, "no pain, no gain!" or "if you'd just get out of the house more you'd feel much better."

Even when you are coping with illness well, and have come to terms with your disease and all the emotions involved, one comment or look can send you reeling back to when you were first diagnosed and dealing with all the well-meaning advice and skepticism.

Why Can't I Make People Understand? will help you work through this and more, such as. . 

• What happens to your spiritual life when you feel alone and misunderstood in your pain?
• How does your atitude affect whether you get the understanding you seek or not?
• How should you pray for others to understand and change their attitude about your illness?
• Is there more to coping with illness than just dealing with the physical symptoms?
• Why do some prayers get answered but with poor results?
• How should you respond when people say hurtful things about your chronic illness?
• What Biblical responsibilities are you exempt from?
• is it okay to get mad at God about it all and express your true feelings about your illness and the pain others are causing?
• How can your relationship with Christ help all of the above become less important?

REVIEW BY: Diane Pederson, BellaOnline's Christian Literature Editor:

Every person needs validation from others. Those “others” may be family members, friends, church family, or coworkers. A chronically ill person needs this too. They long to be understood and seen positively just like those temporary-able-bodied people do. Unfortunately, Christians with a chronic illness are often made to feel that their faith isn’t sufficient or God would heal them.

Chapter 1, Rejoicing in God, reminds us that everyone is commanded to rejoice—not just those with no problems. She reviews what scriptures teach us on the subject. It is so difficult for those of us with any type of chronic problem to remember that God will continue to make us in His image even though we have problems. We are simply to turn over everything to God. That’s hard to do when you hurt or when you have (chronic problem) but it is TRUE!

Being Gentle in how we treat others is the topic of chapter two. We will never be able to make people totally understand what our lives are like. It is futile to try. When they make discouraging remarks to us, we need to remember that God isn’t as concerned with their remark as He is with our response to what they say.

The next chapter (3) teaches us about Acknowledging God’s Presence. One comment that jumped out at me was this question:

How are you living your life? As a child of God or as a victim of man? We can’t have it both ways; we can live as ones who are forgiven and offer forgiveness to others. Or we can be ones who are always distraught that life is not fair. People with this attitude always have an excuse or complaint, never choosing to accept any responsibility for their circumstances or their attitude.

Copen further explains that if we act the victim, we’re letting other people control our emotions rather than letting God’s power control us. Satan, through people, LOVES to defeat us by turning us into victims.

One of the most difficult things for me, and for many others who suffer, to do is to not worry about things. Letting Go of Anxiety, chapter 4, addresses this issue. I don’t know about you, but it is so easy for me to get upset and worry about things like finances BECAUSE chronic conditions stopped my career. It is so hard to remember that God has promised to provide all my needs and has never failed to do so for many years.

Chapter 5 teaches us about Praying and Petitioning for our needs and for others. Then Chapter 6 discusses Giving Thanks as God commands. It can be easy to pray at first, but I wonder how many get discouraged and wind up turning against God because He doesn’t answer their prayers like they want Him to! It is so hard to give thanks when He doesn’t provide that instantaneous healing we would all like to experience.

Every Christian, not just the chronically ill, need to understand the message in Chapter 8, “In Christ Jesus”. We all have an obligation to reach out to others and to lead them to the Lord too.

Recommendation:

[ Why Can't I Make People Understand? ] is an outstanding book to have ready to give to a church member that says, “I was just diagnosed with ..whatever…” This book could be used as a devotional for them while they begin the often drawn out process of determining what medical treatment might provide some relief. It would encourage them.

Copen’s writing style is easy to read. Her writing is very logical. I particularly enjoyed reading through the review, reflection, scripture, action, and prayer suggestions at the end of each chapter. She doesn’t tell us to just “pray about it” and she doesn’t promote “instant healing” if you just believe enough.

Prayer

A Hepper's Prayer

May our sides be easy and ever so light
May we sleep our way all through this dark night
May this fog lift each day and clear our heads
As we laboriously drag ourselves out of our beds

At war with the dragon we always shall be
Until every last Hepper is made virus free
Whether we win or we lose, our cause it is right
And this dragon will know it's been in one hell of a fight

So send out this prayer to whoever you choose
So they'll know that this battle we don't plan to lose
And say it each night as you lay down to sleep

And make it a promise we'll all try to keep    

------------------------------

Dear God

I pray .. for those who are treating

• to be positive and strong
• to persevere and endure
• to achieve UND

for those who finished treating
• to live life to the fullest
• give yourself a good break
• from UND to SVR

for those who have not been treated

• to think of their liver, family and health
• that they meet a good doctor to convey your message
• that they be their own advocate

for those who have not been tested

• to put health above all
• stop denial and accept
• if not, you will live to regret it

-----------------------

Dear God

Give me the power to sit, breathe and clear my mind.
Help me understand how to manage my day when the pain gets in the way.
Provide me inner peace to help me release the anxiety that comes with the feeling of helplessness.
Dare me to overcome the sadness that follows the relentless fatigue.
Let the frustration of the fog pass so I understand that there are better days.
Show me the purpose of such continual ache so I may get on a path I will prosper on.
Convince me that I am not weak and I will stand when I am able and rest when needed.
Hold the thoughts I have started while my mind takes time off.
Allow me to be ‘just fine’ because I am unsure of what else to do.


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SERENITY PRAYER

God grant me the courage to get up and move, ignoring my stiff, sore body and cloudy mind, and to try to decide which of the twenty things I was doing when the pain made me stop is the one I most want to do now; the serenity to refrain from holding and moving any objects which feel the slightest bit heavy, although they may not have yesterday; the foresight to decide exactly where I would like these objects moved the next time an able-bodied person is in the house, and to write this down; and the wisdom to laugh instead of despair at my absurd predicament.


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A FIBROMYALGIA PRAYER:

Heavenly Father we come to you in the name of Jesus asking that you would bless all that visit this site, and especially those with daily Chronic Pain. We ask comfort for the pain, peace of mind, humility that we might understand others better. May all that stay awake in the night hours because of their discomfort be blessed with a love and compassion for others that are suffering also. Help us through our pain to find special times of meditation with you. We seek your healing and we pray for doctors and researchers that they will find a cause and a cure for this disease. Where there is doubt and depression we pray that you would replace it with faith and trust in you. We give you all the praise and glory in Jesus name... AMEN.

"I pray that according to the riches of his glory, he may grant that you be strengthened in your inner being with power through his spirit" Ephesians 3:16


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Our Precious Father God...

We want to thank you for always being here for all of us and for all the mighty and wonderful things that you do for us daily.

Please help us to feel your presence with us daily. 

Father I know that you look down upon each of us and You know all our needs and your Holy Spirit is always here to comfort us. 

Be with each man and woman and meet all personal and earthly needs. 

We ask for healing for pain and illnesses because we know that in your wonderful name is healing and hope for our futures. 

Be with all that are hurting emotionally today. Heal brokenness and broken hearts. 

Replace the brokenness with righteousness, peace and joy in You we pray. 

Sometimes Father we feel like our burdens are hard to bear because of physical pain. Please lighten our loads and show us what your will in all this is for our lives that we might give you the glory in all things. 

Help us to understand better what our pathway in this earth and our special journey is about. 

We pray Father that we will grow daily in you... grow in compassion and love for others, that others will see you in us. 

Please protect and help all that may be in the pathway of awful storms, famines or earthquakes. 

Many people have been devastated in their losses. Bring them peace and meet all their needs. Help those that have loved ones die in storms or tragedies. Help them in their grieving and bring peace and closure. 

We ask for protection for us and for all our loved ones. 

I thank you Father for each one of these dear ones. 

Help each person to know how special they are and that they are loved 

We also want to thank you for Jesus... that you gave Him to us that we might be saved and might live in all eternity with you in peace and happiness.. 

Show each of us truth and direction in our lives. 

We ask all this in the wonderful name of your Son Jesus. 

Amen

9 Best Things About Fibromyalgia

Found this on a website, thought it is quite funny (from Zazzle.com amazing website of super cool products) :

9 Best Things About Fibromyalgia

Life's a Challenge

Everyday is a new challenge to me. My daily routine is to get to bed on time and get up on time to go through my morning regime before I can get my butt out.

In order to achieve this, I face several obstacles. Firstly, getting to bed is simply just jumping on it but not falling asleep or getting sufficient 6 hours of REM sleep which means waking up not refreshed. Next would be able to get out of bed and to the shower which is another challenge. On good days would be crippling and crawling around the house and using a cane to facilitate my mobility on real bad days. It takes about 45 minutes to be able finally step into the shower. Then I'm off to work.

Public Transport

Taking a public bus during the morning peak hour rush can be so frustrating yet a challenge. We squeezed ourselves into the bus and always almost kiss the door or the driver. People standing may just rub against each other's shoulders or be embraced when the driver jam break. Women are at a disadvantage though.

So that's me, standing and holding on to the railing. I need to balance myself at an angle depending on the speed running and the start-stop timing.  My back and hips would hurt so much while standing after 20 minutes that's my suffering in silence while pining in hope for a seat. Each bus trip seems like an endless journey. A journey of struggling to cope with chronic pain on the job. The debilitating effects can have major repercussions just to keep working, never mind about advance in careers, while battling persistent pain caused by Fibromyalgia (FMS).

This poem was written during one of those bad days when things were getting out of perspective, but it's so true and exactly the life of the sufferer of FMS.

It's morning again

Another brand new day

Along with the aches and pain

Will follow to my usual place

Bus packed with people

Without any extra space

Can't breathe, can't stand, can't sit

Wishin someone let me have a seat

A few minutes is all I need

 To ease my agony

Such a torture, what a pain

Having to go through every single day

There's no question about it. Chronic pain presents tremendous challenges for people who are trying to build and maintain a career.

If you like poems, there are more in my next post on "Fibro in a Nutshell". Poems are therapeutic and helps in distracting pain. This post will continue to have unlimited updates as I go along living with Fibro.

What is Fibro?

How do I explain to others that this condition is limiting my physical ability and daily functions? How to explain to fellow colleagues and friends? Doing housework is a BIG issue because all I can do is just anything not washing more than 5 plates or bowls, I spend 30 minutes to hang up a 5 kg load of laundry or 2 hours vacuum and mop 3 rooms. I can hardly accept imperfection of my own home, as I've been an almost clean freak all my life. 

My greatest gift in my life is having the best mum in the world. She understands that I lack the physical abilities ... my wrist tendinities, muscle loss, lack of energy and stamina but I have yet to explain to her about my Fibromyalgia (FMS).  She does not need to know the medical terms and prognosis of this illness but I know for sure she understands from the way I walk, move and behave.   On good days, I would try to do as much as I can then pay for it later. I have to let her know that I still care despite my condition and I still contain the filial piety cultivated in me.

I usually ask the person how they feel when they have the flu. If they reply positive then I will tell them that having Fibromyalgia feels like that every single day, except to add in shooting shocks of pain and sometimes extreme dull, radiating pain. I would also mention the pain feels like having lots of toothache all over.

I hope that by explaining what Fibromyalgia feels like the person will have something to relate the information I’m giving them to without being confused with medical terms and processes they have never heard of before. If I continue on about mental aspects I also say there is this thing called Fibro Fog which makes it hard to recall words and keep trains of thought. To put it simply, it is forgetfulness or some may say that I am "blur" or lost. I know this is not an all-encompassing description, but it covers a lot in basic terms that I hope they will remember.

I hope my explanation will raise awareness and enhance their relationship with those who have Fibromyalgia – including me!

The beginning

I couldn't recall exactly when it started but after being diagnosed, looking back I would have been malaise for a long time then, but had dismissed it to the fact that it's age-related. One morning, I woke up with extreme fatigue, it felt like I had been ran over by a truck and stiffness all over and thought I've become 100 years old overnight!  During that time before I found out about Fibromyalgia (FMS), I had always attributed it to Hepatitis C (HCV). However, statistics and research have published that most cases of Hepatitis C (HCV) are asymptomatic, exceptional being those having late stage liver disease or cirrhosis. Not long after, after extensive research, discovered HealingWell, an awesome US site where you meet, share and interact with fellow "fibromites". There are so many suffering with more debilitating symptoms. From here, I have learned there is a long list of Fibro symptoms where I found myself there.

Besides having widespread muscle aches and stiffness, the intense fatigue is worst every morning that my morning prayer used to be: "Lord, please just let me sleep forever than to suffer this way everyday.". However, it gets better gradually by late morning, sometimes during mid-day if work has been stressful and in the evening when its time to knock off.

It became my main excuse of isolation, indulgence in occasional pity party and depression. I have rejected all invitations for any leisure activities during after-hours. I have become a Spoonie. I have to count the number of spoons I have for the day, one for each activity or destination.  But I'd really loved to attend all those functions, parties, wine and dine etc. I've always enjoyed the aroma of the French Merlot and a Cuban cigar to blend into and of course, LIFE.

The lack of concentration and brain fog has been bugging me. I started getting so forgetful that it becomes embarrassing especially during the course of my duties and interaction with friends and colleagues. The short-term memory loss worries me.

Why is FMS so debilitating? It is not a disease that shows up on blood tests, joints feels swollen but nobody can see it, feeling bruised all over but its not, feeling sleepy but can't fall asleep and waking up 5 times a night and finally stay awake counting sheep. FMS does not cause any damage to the organs. Even the cause is still unknown, there is ongoing controversy among researches and the medical community. What I've learned so far is that the pain receptors have gone haywire, sending the wrong signals to the wrong place. So it's got something to do with the brain and the central nervous system.