When I read this article…I thought it perfectly and entirely summed up what others need to know about me because of my chronic sarcoidosis. All eight items describe me and it’s as if the writer reached into my head and stole my private thoughts. Number six is especially true for me. I hate to ask for help but more than that, I hate the thought that others might believe I am weak, so I soldier on and sometimes it gets very very very lonely.
Routine is not a matter of comfort for people with sarcoidosis. Routine is a matter of survival. Those of us with chronic disease depend on routine to manage everything from physical pain to body numbing fatigue to the constant emotional upheaval of our pain and fatigue. Routine allows us to maintain some sense of normalcy, some modicum of sanity.
It’s not always fun living a life of routine. It can be rote, repetitive and often mindless. Routines are mechanical things. They create structure and but they also lack spontaneity. Routines are both a friend and an enemy to those of us with sarcoidosis. They bring order to a world that is otherwise left chaotic in a body that won’t work properly. They also cage us in that world, forcing us to live within very limited parameters. Routines shrink our world to a manageable size but they also restrict us. They cut us off from so much else that goes on around us and sometimes they make us fearful of what lies outside of them.
When we step out of our routines the consequences can be unpredictable. Sometimes very little changes except perhaps a slight increase in fatigue. Fatigue is one thing we can always count on. No matter what we do, fatigue is always present. Other times stepping outside our routine can bring on something as severe as a flare in our disease symptoms, sometimes bad enough for hospitalization. The route our disease goes, when we change our schedule is anyone’s guess.
Having routine a for those of us with sarcoidosis, or any other chronic difficult health issue, is necessary. It is how we function at our best in most situations. Learning to create these boundaries is one of the first coping skills we learn once we are saddled with illness. Routines bring us a feeling of security, of control, when everything else feels like wildly unpredictable.
Sometimes for our own sanity, we have to try to reach beyond those boundaries though. Part of the balance of living with a disease like sarcoidosis, is learning when to push and when not to push. Finding this balance is a constant challenge but if we stay too stuck in routine, we can forget that there is a big beautiful world beyond the lines we have created for ourselves and sometimes making an effort to be part of that world is as important to our overall health as routines are. There’s always a price to be paid for stepping outside of routines but sometimes we have to weigh the cost against the benefit of taking a chance and sometimes the benefit outweighs the cost. Being stuck in routines is tedious and, while they are necessary for our physical health, they sometimes impede our mental health. Sometimes, despite the risk, it is just as important to overcome the fears we have of leaving our routine to remember that we are not defined by them or by our disease.
There comes a time with sarcoidosis, when you finally realize that you are truly, utterly and completely alone with your disease and, in that moment you feel like the very life is being sucked out of you, like someone ripped inside your chest and tore out your heart. That moment when you realize life with a chronic disease has finally taken everything from you, even your last bit of denial that the support of the ones closest to you will fortify you through this journey, is the loneliest moment in the history of all moments in your life. With gut wrenching power, it forever changes your understanding of the exact nature of the fight you are in. The war you wage is solitary, a duel between only two…you and your disease. It’s also the first time you realize that you might not have the resolve to win the battle.
No amount of support from outsiders can ever make them fully understand the depth of your experience and when they let you down, as they surely will, and the realization hits you that you cannot expect them to understand, you feel grief akin to death. It’s not their fault they don’t understand because no one can unless they experience it. You can’t blame them for their lack of understanding and you don’t but, you do still feel a deep sorrow in the knowledge that your disease has abandoned you forever from the rest of the world around you and the struggle before you looms with a greater sense of doom than ever before. Is there anything left to fight for?
Aloneness is a hard battle itself to wage but, to wage this feeling in a broken, beat up body and with a sense of shattered self worth because of your sarcoidosis, the aloneness takes on an entirely new meaning. Your level of vulnerability is palpable now in a way it never was before. Something has shifted, like an earthquake in your soul, as you realize that this new sense of aloneness is not really new. It was simply masked by your denial that it wasn’t really there and, by your misunderstanding that the support you do receive from the ones closest to you meant that they understood more than they actually do.
Once you have this moment, you have to figure out what you are going to do about it. How are you going to manage this new understanding of isolation and alienation? This is a question that cannot be answered easily but, in order to continue living your life, you must find a way to accept it. It begins with making peace with lowering your expectations of other people, especially those you held to such a high standard of understanding. In reality they walk beside you but since they can never be within you, they can never fully appreciate your physical pain, your emotional angst or the mental hurdles you jump just to make life seem somewhat normal.
Though the support of those closest to you will always mean a great deal and though this support is much needed to help ease the burdens you face, you must never again allow yourself to be fooled that this support is equivalent to understanding. What your loved ones feel is not empathy. It is not the ability to share your experience or to walk in your shoes. What your loved ones feel for you is sympathy. It is feeling of sorrow or pity for your situation. While easily confused because these are similar concepts, they are not the same.
In that moment when you are forced to face that pit in your stomach, when all denial is stripped and, the reality that this journey is fully solitary hits you, it is a devastating experience but, it is a required experience in dealing with and managing a life with sarcoidosis. No one will ever truly understanding the level of unease you are now obligated to live with, the quiet anxiety over the slightest change in your routine and how your body will manage it, the invisible and constant foreboding regarding what level of pain you are in, the nagging nearly undetectable worry over how you will best find the energy to manage a relentless feeling of fatigue and the mind numbing brain fog that makes daily decision making a never ending challenge.
You are now aware that you are on your own in the fight of your life.
Rage against the angst…
Rise beyond the pain…
Climb out of darkness…
Look for the light…
Fight for your life…
Seek to find hope…
Soar above the torment…
Storm through the misery…
Defeat unwelcome despair…
Denounce this disease…
I promise to rise each day and fight for a life…my life!
I promise to take care of my mind, my body…my soul.
I promise to eat a healthy diet.
I promise to get regular exercise.
I promise to rest when I need it.
I promise to push when I can.
I promise to be grateful.
I promise not to cry too much.
I promise to be there for others in need who suffer as I do.
I promise to be voice for the voiceless.
I promise not to be defined by my disease.
I promise to seek joy.
I promise to march through pain.
I promise to believe in the power of hope.
I promise not to judge what I don’t know.
I promise to look my best.
I promise to raise awareness about sarcoidosis.
I promise to advocate for myself when doctors try to belittle us.
I promise to continue to seek adventure.
I promise to appreciate my loved ones…to thank them every day.
I promise to remove negativity and unnecessary stress from my life.
I promise to cling to faith that something better waits for us.
I promise to make love a priority in all my actions.
I promise to be an agent of peace.
I promise not the hang on to anger.
I promise to let go of what is out of my control.
I promise to remember that life is short…too precious to be squandered.
I promise to hug my dog every day.
I promise not to give up.
Hope is defined as “a feeling of expectation or desire for a certain thing to happen.” Hope is a wish. It is a want but, hope is more than this. Hope is also an ambition. It is a a goal. Hope drives us to plan for more and to set our sights on a better outcome.
When you live with a disease like sarcoidosis, you have to cling to hope in order to survive. Hope is the most important ingredient in the fight against any disease. Hope is the fuel that keeps us going during the most difficult days. We have to believe, to know in our hearts, that things can and will improve for us.
Hope is a form of trust, a type of faith. Having hope means that we must believe that light will return to our lives even during our darkest moments. Hope is the unashamed abandonment of common sense. It is a belief that what is yet to be revealed will be make us more whole, restore our peace and bring us serenity.
There is no point to life without hope because hope is what gives us the determination to make better decisions for our lives. We may suffer with a chronic disease, and it is difficult, but we can control how we decide to look at our lives. Will we remain grateful or will we dwell in misery? Hope helps us pick the positive option because, things may not be the way we want them to be, but we can make a conscious decision to believe they will get better.
Hope is a choice.
It is something we can decide to have or not to have. Hope waits for us to choose it. We can be hopeful one day at a time. Hope evolves with us as we grow and change and shift in our own thinking. We must accept what cannot be changed but, we can also have courage to be hopeful even when it feels out of our reach. Hope is never out of our reach.
Living with a disease like sarcoidosis requires a lot of us. We suffer humbling loss in the wake of this disease. Our lives change and change forever. Our bodies are weak. Our minds are muddled. We don’t recognize who we’ve become. We grieve who we used to be and somehow must learn to accept who we are now, strangers in our own skin. How do you do that with grace? How do you let go of the life you once knew so well and learn to embrace the unknown that is now?
The answer is hope.
Hope is the only thing in life that is stronger than fear. Hope is brave. Hope is the only thing that makes miracles happen. Hope gives us the energy we need to keep trying. Hope is the belief that what is to come is better than what we left behind. Hope overcomes confusion. Hope makes all things possible. Hope never surrenders. Hope is limitless. Hope is a renewable resource. Hope feeds courage and courage builds our strength. Hope keeps us alive.
Fear isn’t exactly specific to sarcoidosis but, for me, fear is a relatively new experience. I was not a particularly fearful person before my sarcoidosis diagnosis. In fact, fear is something that has actually snuck up on me over the years that I have been chronically ill. It has taken up a quiet residence in the recesses of my mind but it is constant now and I don’t like it.
Recently, I was given a golden opportunity to travel somewhere exotic that any person in their right mind would want to go. When the chance to have this great adventure was first presented to me, my heart raced and my mind exploded with excuses why I should not go. This was rather alarming to me. I was surprised by it. I hadn’t expected to feel this way and it confused me because, even though part of me knows I live with a new steady feeling of uncertainty in my life, I hadn’t realized that this fear had become so profoundly ingrained. I know this kind of alarm is not good for me and it is not something I can give in to.
After my panic subsided, I took a deep breath and decided that I needed to take a step back from this very odd reaction and examine it further, to better understand why I felt such trepidation at the prospect of being able to spend time in paradise. My head knew what my body didn’t. This was not a normal response. So, I did what I have learned to do since my sarcoidosis diagnosis, I took a self inventory of my feelings.
Self inventory is something I do a lot now that I am chronically ill. I know that I no longer see the world the way the world really is. I see it through the eyes of a person in a broken body but, I also remember who I was before I became broken and the only way I know to keep any part of that person alive, is to fight for her, to constantly examine my motivations and judgements about the world now that my life has been taken over by sarcoidosis. Am I seeing whatever I am looking at through my broken point of view and can I get past that point of view to improve the quality of my life? These are the key questions I have to ask myself whenever something new is presented to me.
Upon further examination of my overwhelming dread at the thought this adventure presented to me, I realized something. I realized that the fear was coming from the fact that my world now is small, very small. The thought of leaving the cocoon that I have created for myself is scary. I live in a cocoon now for a reason. It is safe here. I have routines that help me manage the symptoms of my disease in this cloistered place of comfort and familiarity. In this sheltered place, I sometimes forget that there is a big world out there and, apparently I’ve become a little afraid of it. In this sheltered place I can sometimes fool myself into believing I am physically and emotionally stronger than I really am.
After I better understood my fear, I realized another thing. I can’t let it rule my life and the moment I figured that out, I also realized that I have to take this adventure even if it scares me. While living on my cocoon is okay sometimes, it is not okay to be suffocated by it. The world is a big beautiful place and even if I am sometimes frightened by it, I need to remember that it is still better to remain part of it whenever I can than to shrink and wither in worry and angst in a completely collapsed place of illness and disease.
I will accept that taking this adventure is scary for me, that it will be an effort for me to stretch myself outside of my zone of comfort and routine. I will also and perhaps more importantly, acknowledge that it is good to be physically well enough to accept this challenge. There was a time I wasn’t and there may be times in the future when I’m not. I will embrace this adventure as a chance and a lesson to grow beyond my disease and to live my life, truly and completely. I will be grateful for the insight this trip as given me about how fear seems to be impacting my world view and I will continue to strive to overcome it wherever and however I can. Fear will not rule me.
When it comes on, it takes over your body like a demon possessed. There is no stopping it or sleeping it away. It enters your body, your bones, your muscles at will. It leaves only when it has had its fill.
Like a zombie, you move through the day stumbling, staggering and teetering. You lurch, you wobble, you reel. You lack your once finely tuned agility. Nimble dexterity, a thing of the past.
Fatigue invades your soul and assaults your very being. It takes your dignity, your pride and your passion. The world is dull and dark, as the weight of your own body crushes your spirit and your hope.
Your mind is muddy, dank, depressed and thick. Thoughts come at a snail’s pace and are vague, indistinct and confused. Your brain is full of cobwebs and dust. Your flesh feels like fuzzy unbrushed morning teeth, after a night sleeping with your mouth open.
It is the most unpleasant of out of body experiences as you feel the core of who you are slipping into the most cavernous abyss and a heaviness too big to fight covers you in a doomed sort of melancholy.
Fatigue ravenously snacks on your vitality and the more energy it takes, the stronger it seems to get, growing like that creature from the movie The Blob. It expands and widens as it barrels through your body, unstoppable in its determination to destroy your life and dreams.
It replaces your motivation with profound apathy and emptiness. When it is finished with you, it leaves you resembling a wet noodle, soft and flaccid after being soaked in water too long. After shaking you within an inch of your life, it throws you on the ground, damp and gnarled. You feel shredded and somehow forever shattered in its wake.
It is cruel. It is indifferent. It is savage. It is viciously diabolical in its desire to upend your life. It is ruthless. It is spiteful. It is fiendish. It is singleminded in its mission to demolish your once vibrant world and obliterate your enthusiasm for adventure.
Fatigue is a beast.
Fatigue is an ogre
Fatigue is a monster.
Today is my 47th birthday. I’d really rather not spend it sitting here writing a blog about my life with sarcoidosis. I want to celebrate life today and that’s what I am going to do but, before I do that in honor of my birthday and sarcoidosis awareness month, I will share forty seven things I have learned since being diagnosed with sarcoidosis: (In no particular order)
- Live every day like it’s your last
2. Doctors don’t know everything!
3. When you’re blue…write a gratitude list…it always helps change your perspective.
4. Stop doing things you don’t like doing.
5. Eating a clean diet does make you feel better.
6. Regular exercise actually helps fight fatigue.
7. Having a dog is great company on long lonely sick days.
8. The internet can be a magic place for human connection with others in the same boat.
9. Being vegan is awesome!
10. Ultimately we are all alone in the end.
11. Taking time to rest is important.
12. Pushing yourself is a must.
13. Don’t ever give up even when it’s bleak.
14. It always gets better.
15. Being in nature is better than medicine.
16. Taking up hobbies helps fill the time and is good for the brain.
17. You don’t need to explain yourself to other people.
18. Looking your best will help you feel better.
19. It’s okay to get mad but it’s not okay to stay angry.
20. The loss you feel from living with a chronic disease is real.
21. Happiness is a choice.
22. Don’t use your disease as excuse.
23. You can break your sugar addition.
24. Remove stress from your life.
25. Set boundaries that are good for you.
26. Always have goals.
27. If you are having trouble reaching your goals, change your approach.
28. Cry sometimes. It’s good for you.
29. Laugh every day.
30. Have a sense of humor about yourself.
31. Don’t expect other people to understand what your disease puts you through.
32. Life is short.
33. Don’t let sarcoidosis define you. You are more than your disease.
34. If you’re always right…you won’t be happy.
35. It’s okay that you world got smaller.
36. Tell the ones you love how you feel about them.
37. Be nice…you never know what another person is going through.
38. Life is beautiful.
39. Cooking healthy food can be fun.
40. Don’t give up on a cure!
41. Keep your doctor appointments even when you don’t want to go.
42. Other people will give you advice you didn’t ask for and don’t need.
43. In every difficult situation, look for the lesson.
44. Be present.
45. Have fun with your brain fog.
46. Don’t live in the past.
47. Life is what you make it.