Are you one of those people who have been blessed with good
health and abundant energy? Do you find yourself unable to empathize with those
suffering from chronic illnesses? Do you secretly think to yourself that these
lazy whiners should just suck it up and move on? To be honest, there was a time
when I probably thought those same things. Then, I became the one with the overwhelming
fatigue and constant pain. I don’t believe that someone can truly understand
what life with a chronic illness is like unless they experience it themselves.
I am not even 40 years old. I look fine on the outside, but,
I am far from okay. I have a number of invisible issues that negatively impact
my ability to function on a daily basis. I am going to share some background
information to help you understand my situation a little better. This is the revised
version and is not an all-inclusive list. It would take several pages to list
the majority of symptoms that I have on a regular basis.
I have Chronic Fatigue Syndrome. I am not talking about just
being tired from lack of sleep. I am talking about complete exhaustion. The
kind that makes every muscle in your body hurt and refuse to move. I can sleep
for 15 hours and wake up just as tired as when I went to bed. Every day is a
struggle just to get out of bed and get dressed.
I was diagnosed with Fibromyalgia is 2007. It started as
just an ache in my hip area. Over time it has spread and encompasses my entire
body. My joints hurt, my muscles ache, and my skin feels like it is bruised all
over. When the Doctor told me what he believed was wrong with me, I didn’t
believe him. I thought that was just a disease they made up when they couldn’t
figure out what was really wrong. I wanted concrete evidence. I wanted to see
the problem on an x-ray, scan, labs, or some other diagnostic test. I told him
exactly that, too! His response was… Fibromyalgia is real. You may not see it
on your test results, but, the pain is very real. I couldn’t argue with that.
I also have Raynaud’s Syndrome. If effects my circulation
and causes numbness, the feeling of pins and needles, and the sensation of
being stung by bees. It can be painful and sometimes makes it difficult to walk
or use my hands.
Last year, I found out that I have P.O.T.S. (Postural
Orthostatic Tachycardia Syndrome). It is a rare disorder and is caused from the
Autonomic Nervous System not working properly. It causes my heart rate to
increase significantly when I am in an upright position. It affects my
breathing and my ability to exercise. It can also cause fatigue, fainting,
pain, and a host of other symptoms. Testing showed that my norepinephrine levels
stay over three times the maximum normal limit when I am standing. That means
that my body is staying in fight or flight mode. A few months ago, I found out I have Adrenal Fatigue. I am sure that all of this only worsens my
pain and fatigue.
In addition, I have Celiac Disease. It is an Auto immune
disorder caused from eating Gluten. So, I am on a gluten free diet. Even trace
amounts of gluten can set off an autoimmune response. When my immune system is
weak, I am susceptible to sickness and infections.
I also have Depression and Anxiety and sometimes have panic
attacks. There are days that I am so depressed that all I do is cry. There are
times that I don’t want to leave the house because I am afraid I will have a
panic attack in front of people.
I have been to Doctors, Therapists, and Specialists. I have
tried more medications and treatments than I can count. I have gained weight
and suffered many side effects from medications. I have also seen Homeopathic
Doctors and tried a multitude of Alternative treatment approaches. Unfortunately,
I have not found anything that helps to substantially improve the quality of my
life.
I wish I could accurately describe what I feel physically
and emotionally. However, I just can’t seem to put it into words. The closest
thing I can compare it to is having the flu. Your whole body aches, you feel
sick to your stomach, your skin hurts, you can’t focus and all you think about
it how bad you feel and how much you want to feel better. You are so tired, but
you feel so bad that you can’t rest. It is much like that, except the flu is
temporary and only lasts a few days. For people with chronic conditions, there
is no end in sight. Every day begins another day of hardship. Some days are
better than others. When a person with an ongoing condition really does get the
flu on top of everything else, it can really take a toll on their mind, body,
and spirit quickly!
I try to smile and be involved with my family and friends as
much as I am able. I try not to complain to others or let them know how much I
am struggling. I don’t want to bring other people down or sound ungrateful for
the many wonderful gifts in my life.
My husband is my best friend, and he sees me at my worst. He
has been supportive of all of my efforts to try to find answers and be well. I
am thankful for him every day and don’t know how I would survive a moment
without him. He takes care of me and brings so much joy to my life. He tries to
understand what I am going through, but, it is difficult to really comprehend
something that you can’t see or feel for yourself.
I have a few friends that I have opened up to. I want them
to know that when I don’t spend as much time with them as they would like, that
it isn’t because I don’t want to. It is because I only have a limited amount of
energy in a given day. When I do anything at all, I often end up in bed for
hours or days afterwards. Even just attending church on Sunday mornings lands
me in bed until the following day. If I vacuum the house or clean a bathroom,
my pain is intensified dramatically and I end up in so much pain that I can
barely move for days afterwards. Timing is also important. I am not able to get
up and moving very quickly. I have to take my medication and usually wait an
hour or two before it starts to work and I am able to get out of bed. I try to
do whatever is necessary around mid-morning. Billy usually comes home for lunch
and after that I may spend several hours lying on my heating pad. Then, I try to
get up and do a few things around the house before he gets home from work. He
is amazing and does most of the cooking for us. He knows how hard even the
simple things are for me. Even taking a shower has become a chore. I have a
hard time standing for that long and often end up gasping for breath before I
am even done. After my shower, I am pretty much done for the night and stay in
bed.
I feel like most people expect more from me that I am able
to give. They can’t see the battle going on inside of me. They don’t know that
behind my smile is a fountain of tears that may flow at any moment. I feel like
I am letting people down when I am not able to offer them the support that they
think I should, or, when I can’t go places or do things with them as often as I
would like to.
I don’t want to be this person. I don’t like having
limitations. I don’t want people to judge me or think I am lazy. I don’t want
to be a disappointment to others when I am not able to participate in
activities. I hate the restrictions that these issues have put on my life. It
makes me sad that it causes tension in my relationships. I wish that everyone
could appreciate the efforts I make and would know that everything I do is out
of love for them. I wish that the little things were enough, but, I know that
when others don’t understand what I am going through, nothing I do will ever be
enough. They will always expect more. They don’t know that I just don’t have
anything else to give sometimes.
It is hard to keep a good attitude when I don’t feel well. Sometimes,
I feel like giving up. However, I know that life is too precious to ever give
up hope of enjoying it to the fullest. Jesus tells us in the Bible that He came
so that we may have an abundant life. I am trying to learn to be content in my
situation. I am only human. Sometimes, I feel sorry for myself. Then I remember
that God has truly blessed me far more than I will ever deserve. The thought of
His unconditional love and provision for me literally moves me to tears. No
matter how dark the night is, He always brings the sun. No matter what I face
in this life, it is only temporary. It will all be worth it someday.
I am not writing this so that somebody will feel sorry for
me. I don’t want that. Other people have far greater challenges than I have ever
faced. Many are dealing with crippling conditions and life threatening
diseases. Some are taking excruciating treatments. Others are in and out of the
hospital. Several friends have lost children and family members way too soon.
Many are battling depression and have lost jobs and relationships because of
their overwhelming circumstances. My issues are so minor compared to the
battles that others are fighting. I just wanted to offer a tiny glimpse into
what it is like to live with chronic pain and fatigue. It is my hope that
people will open their minds and hearts and try to be a little more
understanding and compassionate towards those who are hurting.
Everyone has a story. Every person you meet has a pain that
you can’t see. You may not understand their struggle, but, please try not to
judge something you don’t know anything about. The greatest gift you can give
someone is your love. Love and support them even when it isn’t easy. Try not to
take it personally if they aren’t able to keep up with your activities. Chances
are, they would love to be there for every child’s dance recital, community
function, or girl’s night out. However, in the real world, it just isn’t always
possible.
Today is a new day. For some, this day is full of joy. For
others, it may be full of pain. Be a blessing to someone. Be a light that leads
them out of the darkness. You may not be able to walk a day in someone else’s
shoes, but, you can walk right beside them in yours. Sometimes, the best way to
help a friend is to just be there for them.
Ecclesiastes 4:10
If one person falls, the other can reach out and help. But someone who
falls alone is in real trouble.
