chronic illness

No Dreams of Sugar Plum Fairies: Chronic Illness, Anxiety, And Insomnia

We all know that the holidays can be stressful (especially with chronic illness). Traveling, baking, shopping, and crazy family can take regular stress and anxiety up to an 11 for a healthy person. Add it all it on top of illness and it becomes a whole new brand of crazy. The message of Christmas is not the same was what the media and marketing would like us to believe but the exact opposite. The message of Christmas is peace, not busyness. It is a message of hope, not stress. It is so easy to get mixed up in the craziness and mess out on the message, meaning, and purpose of the gift that was given to us in the form of a Savior.

Why am I talking about Christmas in February?  Because it was during this season, instead of being filled with hope, I was filled with despair. Instead of breathing in the peace of the season, I felt like I couldn’t breathe at all.

Chronic Illness, Anxiety & Insomnia
What kicked off the chain of events I don’t know. I cannot think of any one thing that started it. I cannot think of anything that stressed me out beyond my max. Honestly, at the start, I don’t remember feeling stressed at all but, oh, how that would change.

For the last several years, I have struggled with getting enough sleeping (not only quantity but quality). Most anyone with chronic illness can probably agree with me that even when you are out of your mind tired and beyond exhausted that sleep can be hard to come by. It can be difficult to get comfortable enough to fall asleep. It can be difficult to stay asleep without pain waking you up. Sleep is supposed to be refreshing, rejuvenating, and healing but that isn’t always the case. Thankfully, up to this point, there were medications that helped overcome these hurdles.

I’m not sure what happened. The trouble started about a week before Christmas and with every night that passed, it become increasingly more difficult to fall asleep (even with treatment). I found myself spending most of the night staring at the ceiling instead of the back of my eyelids. I didn’t feel manic but it was like my body would just not shut off. It was like I was currently plugged in. At the beginning, I didn’t feel like the reason I couldn’t fall asleep was become my mind was racing. I know that feeling and this wasn’t it.

Anxiety has definitely been a struggle. It was always an on and off battle but after my bowel obstruction surgery, it became an ever increasing struggle. I am terrified, TERRIFIED of having another obstruction. We know that scar tissue is there and we know that it is causing a problem with pain and function of my GI system. Because of my obstruction history, I am considered too high risk to go in preemptively to remove it so I feel like we are just waiting for a repeat performance and that scares the heck out of me.

So while I have felt increasingly anxious, I did not feel like that was what was keeping me up at night. My mind was not saying, “I’m terrified of another obstruction or emergency surgery.” It was saying, “Why the heck aren’t I asleep?” At least that is what it was saying at the beginning.

By December 23 I wasn’t sleeping at all and I mean at all. Not that I just wasn’t getting quality sleep but I was literally not sleeping. My mind and body were just on constantly. I couldn’t even nap during the day. It was absolutely the most miserable feeling I have ever experienced.

With every night that passed, things began to shift. My anxiety became magnified and any hint of depression became a billboard. I was constantly on the verge of tears and I became hypersensitive to light, sound, and touch. It is impossible to enjoy the fun of Christmas with family when you feel like you are in a hole. It is impossible to embrace the peace of Christmas when it seems like you have lost the understanding of the concept. It is impossible to sing “O Holy Night” when your nights have become a living hell.

My body and my brain began to do crazy things. We know that the long term side effects of not getting enough sleep can increase your blood pressure, your risk of developing diabetes or other chronic health conditions, and memory loss to just name a few but the side effects of sleep deprivation are downright scary. Your cognitive function becomes impaired such memory loss inability to concentrate. You become more emotional, irritable, and unbalanced. Mentally, in addition to increased anxiety and depression, you can become flat out delusional. You can begin to hear and see things that aren’t really there. You can experience sleep paralysis (which you know if you have every experienced it, it can be terrifying).

Personally, I didn’t hear anything but by night 7 or 8, I felt like I was seeing shadows. Probably the most scary experience was one night towards the end of this awful experience and I was laying in bed one night with my eyes closed and I opened my eyes to see what I could only describe as the shape of a grim reaper above me. Again, I want to be 100% transparent in sharing my experience. It was terrifying. I began to scratch/cut myself on my arms and upper legs not to hurt myself but in attempts to find something to break the anxiety. Something to break the cycle. I was desperate. I would stare at the medicine cabinet and wonder how much I could take to knock me out without going too far. I know I was on the brink but thankfully I had enough insight left to recognize it.

My parents had taken Abby to the beach with them the day after Christmas so she was not here during most of this ordeal thankfully. John was obviously aware of what was going on but on December 30th, I disclosed everything. The scratches. The urges. He held me tight and the next morning, he called my doctor’s office (which of course had been closed during to this point during this ordeal because of Christmas – holidays are a bad time to lose your mind) and we headed to the emergency room.

In addition to the psychiatric rundown, they also did blood work to make sure there wasn’t something physically wrong, like a chemical imbalance or a vitamin deficiency, that could be the problem. After the initial rundown of questions, they gave me a small dose of medication which unfortunately lost its benefits as soon as they sent in the nurse who butchered my veins before finally successfully drawing blood. I hate having beyond crappy veins.

I was cleared physically and deemed not a threat to myself or others psychologically so I was sent home with a three day prescription to get through until my doctor’s office reopened after the new year. I can proudly say that I was not awake to see the ball drop and ring in 2015 because, hallelujah, I was sleeping. SLEEPING.

It was amazing how much of a difference just that one night made but recovery was definitely a process and the experience was definitely a wakeup call. When my doctor’s office reopened, she referred me to a psychiatrist. It was time to give myself and my family a better life by finally getting my anxiety under control. Whether or not, consciously my anxiety kicked off this chain of unfortunate events, I have allowed it to consume much of my life already. I accept the reality of my life with chronic illness and the fact that uncertainty is a part of the gig but I also want to accept that I don’t have to let that control my mind. I want to be able to exhale and embody the peace Christ has to offer. I want to be able to let go versus constantly carrying that weight around.

Today I had my first appointment with my psychiatrist and while the drive there nearly induced a panic attack (I hate driving in Charlotte) but it was definitely a great experience. She was very knowledgeable about endometriosis and chronic illness and in addition, recognized the depths of how it impacts every impact of your life. As crazy as it sounds, I have heard so many doctors, real doctors, blow off endometriosis, fibromyalgia, and other chronic illnesses as not a big deal or easily “cured” or handled. When she said, “people just do not understand the gravity of endometriosis, how it works, and the damage it causes and if they did, there would be more focus on finding the cause and how to treat it.” I could have kissed her. Then she stated how Lupron was an evil drug and never, ever be used. Can we give this woman a medal?  This is coming from a psychiatrist, not a gynecologist or women’s/pelvic health specialist. Maybe we should start giving awards to awesome medical professionals as a part of the Blogging for Endometriosis Awareness campaign.

In short, this experience was pure hell and I would never, ever wish it on my worst enemy but like all things in life, great and positive things can happened as a result if we allow them to. I am now working to make major steps to move forward and hopefully by sharing my story of chronic illness, anxiety, and insomnia, I will be able to help someone else do so as well. I will keep you informed on how my anxiety journey continues and how things go now that I am working with a psychiatrist (and we are adding a therapist to the team). I whole-heartedly believe that chronic illness is holistic and affects every aspect of your health (physically, mentally, emotionally, etc) and therefore I whole-heartedly believe that it should be treated holistically.

Do you battle anxiety (or depression) and have any remotely similar experience as a result of how your anxiety/depression manifests? What have been the things that have helped you the most get a grip on it?


, , , , ,

5 comments on “No Dreams of Sugar Plum Fairies: Chronic Illness, Anxiety, And Insomnia

  1. Ally says:

    Oh Jamee, I want to wrap in a giant hug and further thank you for being so vulnerable in this heavy time. I know anxiety all too well and have been in your shoes in more ways than one. Music is one of my biggest outlets. I play cello and while I am playing, it seems as though everything disappears.

    EndoSister love and all the spoons I can spare! Matthew 11:28-30

  2. Cheryl says:

    i have sleep issues but not as severe as that spell. i do go many nights in a row on just three hours, including my “nap” (usually i just lie down then, i rarely sleep)….and that’s ALL on Ambien PLUS two benadryl (same stuff that’s in man OTC sleep aids)….tonight i took those at 930…its 1208….i rarely feel ready to start trying to sleep (yes, a long sentence, but i think some will get it). when i emailed my sleep nurse practitioner to get a different med (which she has always said would be fine, email contact included). Instead i got a call, a false lecture about when i was last in (they first said 2012….they May 2014…no apology in there and actually just switched “You haven;t been in this office in years: to :…this office in very nearly a year.” so they made me an appt….for APRIL….i’m in better shape than you are so don’t intend to upstage, just to share…for me, little sleep = lots of pain so what a fun wait

    more important than my hijack, i hope you continue to SLEEP and the nice doc helps. it is amazing how a truly great doc (incl beside manner) helps us hol on

    • Jamee says:

      The new medications have not been helping like we had toped. She spoke so highly of this one she wanted me to switch too but so far (but I did manage to pass out in the kitchen so John had carry me back to our room and I have absolutely ZERO recollection so that is exciting but the good news is having a doctor that was ready and will to join me in this fight so I know this is such a quick slip in the journey towards finding healing!

  3. Lisa Ehrman says:

    I’m so sorry that you had this terrifying experience. Chronic illness and the meds we take, and the surgeries…wow! the fears are too very real. I’ve just undergone one, and am also experiencing fear that it might have to be repeated, because of my connective tissue disorder. I, too am praying for God to keep that fear away. I’ll pray for you, too. God bless 🙂

  4. Jessica says:

    Almost exactly the same as my experience except I was dealing with CES and almost exactly the same days! I wasn’t awake for the 31st-1st either cause I FINALLY got to sleep! I completely understand. Hope you are recovering!


I love hearing from you!

%d bloggers like this: