One of my fondest childhood memories was the one day a year that my sisters and I did not have a bedtime. It was New Year’s Eve and mom would let us stay up as late as we wanted as long as we were behaving ourselves. We played board games, watched TV or some home movies, and played with presents we had received for Christmas. We were so excited for this night because most of the rules were suspended and we could enjoy one another as the New Year rang in. My sisters and I would boast to one another about how late each intended to stay up but the sun would rise to find us fast asleep. It is a good memory filled with the “care-free days of childhood” concept touted by adults who broadly discredited the hurdles one faced during childhood. As we grew, the excitement and rarity of “all-nighters” would quickly fade.
Our Mom was chronically ill, which required my sisters and I to take on adult responsibilities in order for the home to function. We would care for her after one of her numerous surgeries and complete the daily household chores while Dad would go to work at the steel mill. Due to the fact that my own illness reared its ugly head just prior to my 5th birthday I also had to deal with it whenever it decided to present itself. However, I was never raised to be a sickly child so I did not think much of it. The only thing that really made feel sick is the frequency with which I developed pneumonia and bronchitis. The fevers and flares of rheumatoid arthritis (RA) ran a vicious cycle causing the illnesses, which in turn caused the flares. I would miss a lot of school, which was the only good thing about it, but I did not understand the scope of rheumatoid arthritis. The all nighters that resulted from those sicknesses were not such a fond memory. Yet, it was my sense of normal so it was no big deal until adults made the distinction. Of course, as my sisters and I grew, life’s demands would reframe our perception of what it meant to lose sleep. The ratio of staying up to have fun versus staying up to study or perform some other necessary task quickly became one-sided. Sure, we clung to the memory of our New Year’s Eve parties and did our best to recreate them as the years sped by but as with most childhood memories, reality never quite lived up to the idyllic framework into which we stored these memories.
With the average person, adulthood brings with it a multitude of stressors that threaten to steal his/her joy, happiness, peace of mind, and sleep. Anxiety over work or school deadlines, crying babies, excited anticipation, sorrow, elation, depression and illness are all excellent examples of things that can rob a person of sleep. I am certain most of us have stories of watching the hours slip by until we see the crest of the sun signaling the end to yet another opportunity to sleep. Whether the loss be for fun or necessity makes little difference until the following day. Your perspective will be altered due to the sleep deprivation and the emotional reaction to the cause of the sleep loss. As a result, it is not advisable to make critical life decisions when you are experiencing prolonged sleep deprivation. Folks who live with chronic insomnia haven’t the luxury to get a good night’s sleep prior to making important decisions or living life; therefore, their bodies will adjust to run on few hours of sleep. However, the cost is dear.
Eventually, age dictates that we make wiser choices concerning our sleep habits and that staying up all night and then trying to function during the day is not the smartest thing we could do for ourselves or the people who depend on us. Of course, this only works under the assumption that losing sleep is completely and always under our control. Sadly, this is not an accurate assumption, for there exists a multitude of demands competing for our sleep that are neither fun nor desirable.
For a person living with a chronic illness you will have all the reasons to lose sleep as the average Joe plus all those associated with your specific disease. First, and most obvious is the physical discomfort you may suffer from the disease. Few things steal your sleep faster than pain. In fact, when you are in throes of uncontrolled pain, sleep is the last thing on your mind. Enduring and surviving the pain attack is the only thing you can focus upon moment by moment viewing each passing hour as a victory. At times, it comes down to surviving each passing minute due to the unrelenting agony. Rational thought has vacated your person because you are a raw bundle of throbbing exposed nerves. At this moment you would do anything to make the pain stop or even lessen. Nothing you have tried is working to decrease the discomfort and it is the middle of the night so in your mind the rest of the world is asleep and you are left to battle this demon alone, which makes it that much worse. You begin to think of everyone else tucked snuggly in their beds dreaming of their fantasies completely unaware of your suffering. Logically, you know that there are many people who are not sleeping but that does nothing to salve your sadness and despair. The chronic sufferer who lives with others is caught between the desire to have their loved one up and encircling them in a reassuring hug and not wanting to have them around so they do not have to “put up a brave front” in order to protect their loved one. Our suffering frightens others and makes those who love us feel helpless and sad; therefore, we attempt to shield them from the worst with which we must deal. Hence, you conclude that it is best if you face this foe alone but you so crave contact with a person who truly understands. When the pain is at its apex, there is no thought… there is only agony.
Naturally, the type and longevity of the pain being endured will dictate the long-term effects upon the person experiencing it. For the purposes of this post, I will stick to those of us who have suffered long and hard with no end in sight because it creates a dynamic that cannot be experienced by a person up all night battling the flu, bronchitis, pneumonia, or the like. Not to say that those illnesses are not serious and miserable; however, they have a finite life cycle meaning the person is going to get better leaving the pain and discomfort far behind them. A person suffering from chronic pain and disability does not have that luxury. An escalation in the suffering and level of disability is certain; therefore, there is no foreseeable end for the chronic sufferer. That thought alone is both daunting and disheartening affecting the person’s ability to continue fighting against the disease. Eventually, the pain reduces to a manageable roar and you continue on your path claiming another victory, for you did not give up.
Emotional suffering is another element that will rob a person of a restful night. When one is up all night battling physical pain you can rest assured that there will be emotional distress as well. Feelings of loneliness, resentment, abandonment, a sense of injustice, fear, anger, confusion, hopelessness, and even despair enter the arena that is your suffering. These emotions are usually kept in check on a daily basis but during a flare of symptoms the psychological barrier holding them back is breached. Chronic sufferers have a constant level of pain with which they live. We accept that level as the “norm” and continue on with our lives but when that pain level is elevated by forces beyond our control then we are thrown into what is termed a flare. This usually consists of a heightened activity of the disease where the treatments are inadequate in controlling the disease progression. The cage you and your doctor have built for it has failed miserably and it unleashes its fury at your attempt to contain it in the first place. Nothing will stop it until it decides to run its course and settle down. Once it settles and you have survived it you are usually left with new parameters of damage, pain, and disability in its wake. In effect, you must now adjust to a new “normal” level. Each and every time this happens it puts you in fertile ground for an emotional crisis because you felt that you had a handle on things and were able to live your life. Now, you must get used to this new level of functioning. Sometimes, secondary disorders associated with the main disease begin to surface. As if you had not had enough to deal with before, now there is even more. The doc informs you that this last flare has awakened two or three other subsequent disorders or diseases that usually pop up during the lifetime of a long-term sufferer with your particular disease. Great! Thanks Doc, you made my day! Depression, despair, anger, and resentment can move in quickly and it isn’t as if you do not have valid reasons to feel these emotions. No one can tell you how you should feel and you should allow yourself to acknowledge these emotions, feel them, and then firmly put them in their place. If you stay too long on the pity road it will surely consume you. During these times it is imperative that you stay clear of people who offer you pity because you have enough of your own and do not need others unloading their negative emotions upon you. Pity is destructive when given to oneself or when others lavish it upon you. It communicates hopelessness and there is no place for that within your daily struggle. Also, stay away from those who want to throw old adages or over used Bible verses at you because they will not sound like music to your ears; instead, they will be like nails on a chalkboard. You know the ones of which I speak, “What doesn’t kill you makes you stronger!” “God promises never to give you more than you can handle”. The truth of these statements makes little difference to someone who is suffering. Rather they are familiar phrases used by those who have no idea what to say to you. Likewise, if spoken by a person whose worst suffering consisted of an infected hangnail then the words can be as harmful as a physical blow. The ironic thing is, we do not need someone to give us all the answers. In fact, most of the time we only need someone to hold our hand or hug us gently without saying a word. Sadly, few friends and loved ones have the strength and courage to offer this support. As a result, we smile, nod, and try to exit the scene as gracefully as possible.
Spiritual pain will ravish the mind, body, and soul and has the darkest potential to bring you to utter despair. Due to the fact that so many messages are out there concerning human suffering and illnesses in relation to God’s love or lack thereof, this pain can be truly devastating. As my life has progressed, I can honestly say that the only time I felt true despair is when I bought into the negative and erroneous messages given to me by people who are supposed to know what scripture is telling us about life. In my search for answers, I consulted many men of the cloth, books, histories, and research. I was unable to discover any useful information that would soothe my soul. I abandoned my search for wisdom and knowledge in the words of mankind after I was told that I was created to suffer. Can you imagine sitting in the office of your pastor in tears pleading for answers and that is the one he comes up with? Yeah, I rejected that one quickly and began my own in-depth search for God’s heart and will for my life. I feel I have found many truths in scripture and I have found many errors of mankind’s interpretation of scripture, which condemns, criticizes, and hurts those who are already hurting so terribly in creation.
My quest brought healing to my soul, replacing my spiritual pain with assurance, love, and self-acceptance. Once that happened, I felt I could face anything that this life wanted to throw at me. My disease is NOT a punishment from God. God did NOT afflict me with this disease. God loves me and created me for a purpose that requires great strength and faith. I have a purpose and it is not to suffer. All the diseases and heartache in this world are a direct result of a broken creation. They are not a curse and they are not a punishment. Why then do we, in particular, suffer from these diseases? Because, only those whom God knitted with great strength, faith, fortitude, perseverance, and love could possibly bear these illnesses. Most would be destroyed by the symptoms we view as normal. Most would curse God and live in raw anger if they had to deal with what we must within one hour during the day. God has created us to endure the worst Satan could possibly throw at us and we will be victorious. We may not win every battle but the war has already been decided; therefore, we must survive the effects of a broken creation and shine our faith unto others. Once the spiritual pain has been conquered then all other types of pain can be managed. It won’t be easy but you won’t be fighting alone as long as you lean heavily upon Christ’s strength.
Psychological pain is ever present when dealing with a chronic illness. Sometimes you just cannot turn off your thoughts. They just keep playing like a broken record or a video on a continuous loop in your head. You try reading, watching TV, snacking, pacing, cleaning, reading scripture, anything you can think of to stop you from thinking. None of these things work and you end up exhausted and irritable. You just want to sleep but you cannot. Fighting your disease on little sleep makes it that much more of a challenge. It also opens the door to depression, despair, and suicidal ideation. There are those who would try to convince you that if you have enough faith then you will not be depressed. Hogwash to that idea! It is so easy for people who are not hurting to point at you and say that you should not be depressed because God will heal you IF you have enough faith. It sickens me to think of the harm these people are doing to those suffering. As if we do not have enough challenges now we are made to feel guilty about being depressed because we are struggling to deal with this horrible disease. Depression is a natural and common result when living with a chronic disease. Now, understand that does not mean you have to be depressed 24/7 from the time you are diagnosed until the time you die. However, you can cut yourself some slack when you experience depression occasionally throughout your life. Let’s face it, if we only had the disease to deal with it would be enough to put us in a catatonic depressive state but there are multiple aspects within anyone’s life that can lend themselves to depression. Fighting off depression is necessary because we possess excellent reasons to be depressed, which is why we must resist it with everything we have. Once depression gets it’s greedy hooks in us, it never wants to let go then we become trapped in a vicious pattern of self-loathing and projected anger. This leads to social isolation feeding the depression into an unmanageable monster. Anti-depressants and a great therapist will help you fend off the voracious appetite of depression. More importantly, having a healthy loving relationship with Christ will help you find your way out of the darkness time and again. Stop beating yourself up and do not consider yourself weak if you succumb to depression on an occasional basis. You have the right to be bummed out and bemoan your life for a bit; however, make certain you set a projected “end date” to this episode of depression. You cannot stay in that mode because you will lose yourself and allow the disease to become your identity.
Half of my medication indicates it “may cause drowsiness” while the other half tells me it “may cause insomnia”! You would think that they would even one another out allowing me to get a good night’s sleep. Well, it doesn’t quite work that way. Most medications taken for chronic disorders are toxic and lend themselves to the development of secondary diseases. In a society where we expect the doctor to fix us by providing us a magical medicinal cure all, it is difficult to understand why the medications offered us can do just as much harm as good. Assuming you and your doctor have weighed the pros and cons of the medication you are taking then you know the possible side effects and the benefits of each. Taking any medication is a trade-off but we hope it will help more than it will hurt. Once you get the medicinal cocktail of effectiveness achieved then you stick with it until something shifts. Once the cost/benefit ratio no longer benefits you then another solution must be found. Just as your disease progresses, so too, should your treatment. Regardless, medications have a huge impact on sleep patterns.
Sleep is an evasive necessity. We need it, we crave it, and yet there are times when we will actively avoid it. When you have a disease that causes pain then there are times of the day that are much worse than others. Getting up from sleeping is a very bad time because everything has stiffened and the pain and mobility will be at its worst. Hence, your psyche tells you that you need to avoid that horrible time period. The “recovery” time takes a huge chunk from your day and you feel absolutely miserable making it that much more difficult to fight off your emotional, spiritual, and physical pain. After downing your medicinal cocktail, it can take an hour or longer for you to feel as if you have reached your “normal” level of functioning for the day. Because your 24 hour day is not the same as everyone else’s you may have only a small window of time to accomplish “life” before it is time to repeat the process. As a result, you discover you can get more accomplished if you skip sleep and do as much as you can before your body demands that you lay down. One day turns into two but you fear the misery of the “recovery time”, so you fight sleep at times. This strategy backfires because your lack of rest causes you to sleep very soundly for longer than normal periods creating a much more difficult wake up and recovery time. Without sleep, we cannot function for very long and all sorts of nasty medical and psychological conditions arise. Plus, without rest we are more likely to inadvertently trigger the dreaded flare. Hence, the question persists, “To sleep or not to sleep, that is the question”. My hope for each of you is to enjoy a peaceful and restful night’s sleep. Remember, when you see the hours tick by and think or feel alone…you are not alone. There are thousands of us out there struggling through the night and day right along with you. Hang in there!
Tina M Blackledge, MS