Can An Optimist’s Heart Survive Chronic Illness? Finding Hope in the Hopeless
Being an Optimist With Chronic Illness
I am an optimist with chronic illnesses. I prefer to write in a positive, encouraging way because let’s face it there is quite enough negativity in the world without me adding to it every five minutes. I do strive for authenticity and honesty and that is what I hope this post is, authentic. This is my life as I know it, full of both silver linings and storm clouds.
Lately, I have found myself in a dark tunnel and I feel like it is closing in on me bit by bit with each passing day. I would compare my life with my husband’s tunnel vision. He has a rare genetic eye disease that causes him to lose his peripheral vision and he is now legally blind. He sees centrally, but his vision is like one long tunnel with a light at the end.
This is exactly how my life with Lyme disease has felt over the past year. I feel as if I have reached the deepest and darkest part of my current tunnel and I am unable to see the stars for the prison bars so to speak. I sense that there is light at the end of it, I just cannot see it yet.
My optimist’s heart is currently drowning in a rain storm.
I just don’t feel like myself today.
In A. A. Milne’s Pooh stories there are a few lines that describe me perfectly this week. Pooh says, “I don’t feel much like Pooh today” and Piglet replies “I will bring you tea and honey till you do.” I do not feel like myself, in fact I feel terrible. There is no sugar-coating Lyme disease. It can and will make you feel like you are knocking on death’s door.
I have silently watched my life become more and more narrow. The scale at which I am able to function has become minute. I would say that I cannot do even a 1/4 of what I could do one year ago. It has been discouraging. I have nightmares about being bed bound and unable to get up at all. This is how close I am to the edge of being deathly sick.
Picture a 360 degree theater, this is normal life. My life however has become a stiff, stark 90 degrees or quite often much less. It is extremely measured and calculated. I am constantly racing against the clock, or in my case the number of spoons (energy allotments) I have on any given day. The life I can live is whatever will fit into that narrow space between having enough energy to get out of bed and the point where I know I will crash and burn.
You can read more about my struggle to accept the limitations of Lyme disease here: Learning to Accept The Limitations of Lyme Disease
Searching for A Way to the Light
Yet, in the midst of all of this darkness, I find myself searching for a way out, a way to the light. In my mind, if I think on the bright side long enough, I will find myself there. Like I told my husband yesterday, I want to be well! I want to be completely recovered, in fact I want it so badly, I am craving it like a person with a sweet tooth craves chocolate.
Even though I know complete recovery from late stage Lyme is a long shot, I feel like at some point in this twisted journey I will at least find myself in a better place than I am right now. Like my doctor says, “We are searching for remission.”
To be completely honest, there are times when I will have an hour or two glimpse of a better life. A rare spurt of energy will sprout up and a slightly startled me, will gasp and say, “Where did that come from?” Although, this is the exception and not the norm.
Lyme disease has a way of monopolizing your life, your energy, your everything. Someone very aptly stated that Lyme is a thief. It definitely takes and takes and never gives anything in return, except sickness and misery. Although, I have to say it has given me a better perspective of the value of normal daily living.
Me Trying to Be Normal
Me trying to be normal, now there’s a picture for you! I tried to go out to dinner the other evening like a normal person. It was a disaster.
I spent the evening silently praying that the Lord would just get me home safe and sound. I actually pleaded with Him to help me blend in and not make a scene. Meanwhile I felt faint and had chest pains. I literally gripped the edge of the table with a death hold throughout dinner to keep from toppling over. My blood pressure soared and then dropped.
The room went spinning and I kept smiling. My vision went wonky, but I held my own – barely. I was wearing my battle mask.
While God did answer my desperate prayers and I made it through dinner and back home safely, my endurance was bought for a steep price. I have been in the bed ever since I returned home on Friday evening. “Just keep smiling,” my inner voice scolds me. “Grin and bear it, the sun will come out tomorrow.”
Is this really my normal?
Sadly, yes this is life as I know it. Head pressure, severe imbalance, blood pressure problems, chest tightness, pain and heart rhythms that make me feel like I will never be normal again plague me. Fatigue that is so strong that I might as well be wearing iron bands, cements me in place.
I keep wondering if I will ever feel well enough to get out of bed again, ever? Even though in my heart of hearts I know my life will improve. I just have to keep fighting this dragon called Lyme disease.
Along with my optimistic heart there is a dark side, a side of my life that is filled with worry and doubt. I rarely show this side of myself to my husband and family. I worry about my children and my husband having to manage without me. I worry that I will run out of optimism, out of hope.
Deep down, I realize that this is just a bump in the road to what I hope is, if not complete wellness, at least a major improvement. I told my husband this morning that I hope I get the privilege to look back on these days of my life in the future and say “That was hard, but I made it!” After nineteen years of sickness, at least I can still say I have that hope!
I Envy Normal
Someone made a statement the other night at dinner that has stuck with me. She said, “People always think the grass is greener on the other side, when really it just has more fertilizer on it.” This is so true.
As a person with multiple chronic illnesses I see the lives of my friends and family and feel as if life is just passing me by. I want what they have. In a healthy way, I am envious of their well-being.
Although, I believe every person has their own personal battles that they fight. We just don’t see those battles, we see their “war paint,” their battle face that covers the turmoil underneath. After all, what is “normal?” In my opinion it is just a frame of mind.
I am so guilty of plastering on my battle face and telling everyone that I am just fine. I did it at dinner the other evening. They kept asking me if I was “O.k.?” I kept saying repeatedly, “Oh, I’m fine.” Even though on the inside I felt like death, I just wanted to be out on the town for a normal dinner out. For once I didn’t want to think about being sick. I want to be, “fine.”
Did I accomplish normal? No, not really. That phrase that people often say, “But you don’t look sick,” might apply here, at least partially. Because in reality, I believe I do have the pallor of sickness right now. I do look sick, especially when I don’t have my “war paint” on.
I am weak and off-balance. I literally wobble when I walk some days. My eyes are tired and I sit in a hunched over position due to pain. My hair is thin and lifeless and lacks the shine of health.
My vision is hazy and my hands are sporting lumps that they say could be Rheumatoid Arthritis setting in. My heart beats in what feels like a thousand different rhythms a day and my blood pressure is either in the toilet or up in the clouds. My breath is painful, ragged and stifled.
Normal? I think not. But, I have the hope of finding normal. I’m so thankful for the comforting words of that wonderful poet divine, Emily Dickinson. I often gather great joy repeating her sweet words, “Grant me, Oh Lord, a sunny mind – Thy windy will to bear.”
A sunny mind, doesn’t that sound like a beautiful thing!
Finding the Hope in Hopeless
So where do you find “normal’ in a life filled with limits? Where is the hope in a hopeless storm?
Can optimism live in a chronic lifestyle?
In short, yes! I gather strength from the words of others who have conquered the darkest tunnels of life. Their words of sunshine beam down through my invisible prison bars and like an angel in the night unlock the darkest cells of my heart.
I am a lover of positive quotations, I collect them much like other people collect valuable coins, jewels or cars. I write many of them down in notebooks that I keep by my bedside. I call these my positive notebooks. They sustain me when I am too tired, sick or confused to read my Bible or other books of encouragement. They are like little rays of sunshine.
I thought I would share with you today a few of the quotations that have helped to encourage and sustain me over the past several years as my sickness has become more pronounced and severe. They are all positive and filled with hope.
They are the sunshine on my cloudy days. May they bring you hope and light.
Keep encouraged and fight on!