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?


chronic illness

My Thanksgiving & Overcoming Adverse Side Effects of Medications

My Thanksgiving holiday didn’t go quite as planned.

By Thursday night, I had spiraled into an anxiety-driven level of crazy I have never experienced by after starting a new anxiety medicine (Remeron) after seeing my rheumatologist and going over my symptoms. I tried really, really hard to keep everything I was feeling hidden and not show my family was was going on under the surface. The last person you want carving the turkey is a crazy person. I became very aware of what was going on Wednesday and consulted my doctor which resulted in a change to a new medication but in the midst of the troublesome medication making its way out of my system and the new medication going in, it made for an explosion Thanksgiving night.

From my research and the conversation with my doctor, I learned that Remeron is one of those medications that either works really great at controlling anxiety or makes you feel like a psychopath. I was the latter. It was a scary experience and thank God I’ve got a husband who is patient, supportive, and involved in my treatments and who recognized what was going on and helped me get in touch with my doctor versus putting me in a padded room (although it might have been a good idea at the time).

I am happy to share that since the old medicine has moved completely out of my system and my new medicine (Wellbutrin) has started to take effect, I am feeling much, MUCH better. I feel like my balance has been restored and I am in much better control of my anxiety and emotions which I think will only get better as the medicine takes full effect.

The sad truth with a lot of anti-depressants and anti-anxiety medications on the market can have a negative impact on your mental health versus making it better. I had an adverse reaction to Cymbalta at the beginning of the summer summer which made me foggy, depressed and antisocial. The reaction to the Remeron was much more intense and happened very quickly (within a couple days) after starting the medication versus over the course of weeks/months. After my experiences I was a little hesitant to try another medication but I knew I needed help to regain control of my anxiety and my emotions.

The moral of this story is to read the materials that come with new prescriptions, take time to talk with the pharmacist, and have your spouse (or someone that lives with you or is close to you) read the materials as well so they can be aware of possible adverse side effects of medications and be able to recognize signs of trouble.

Every medication affects to each person differently so what works great for one person may not work at all for another. My experiences with Remeron and Cymbalta are just that, my experiences, so I am not saying that someone should never try them if their doctor and themselves think that they may be an affective treatment to his or her illness.

I am sharing my story in the name of both transparency to show the whole picture of life with chronic illness (which includes much more than physical health) and most importantly to stress the importance of being aware of side effects and precautions of prescribed medications, listening to your body and recognizing when there may be a problem, and having the strength and courage to ask for help. I don’t want anyone to experience what I went through and hope that by sharing I can help raise awareness.

The informational content of this post is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

chronic illness

Coming Out Of The Fog

::dusting off the cobwebs::

I knew I had been way from the blog awhile but it was not until I logged in today did I realize just how long it has been. It was another reminder of the dark place I woke up in this weekend.

I have not hidden my struggle as I tried to make the adjustment in beginning the disability process. It was definitely a challenge to figure out a new sense of normal for this next phase of my life. The new diagnosis of peripheral neuropathy brought along with it a new treatment. With Cymbalta, I did experience a big decrease in my neuropathy symptoms but it also had some unexpected side effects. Whenever I have seen the TV advertisements about anti-depressants actually increasing depression and anxiety versus treating it, I never understood how it could be possible. Its like taking an anti-nausea medicine making you nauseous. It doesn’t make sense, does it?

I didn’t realize just how far I had slipped until this past weekend. Beyond living with the physical pain and fatigue of my illnesses, I felt like I had just become a shell of the person I used to be. It was almost like I was watching life from a distance. As each day passed my world was becoming smaller and smaller as depression and anxiety continued to take more of a hold on my life. I knew something was off but I couldn’t figure out why I felt the way I did.

On Saturday during an honest, deep, and heartfelt conversation with my husband, it was like something inside me clicked. For the first time in weeks, I feel like I was able to connect the dots. I was finally able to fully hear and understand my husband’s concerns that he had been sharing but I had previously been unable to take in.

It was a hard realization. I had such a flood of emotions. I felt so sad and angry about what I had “allowed” my life to become. I felt like a failure as a wife and a mother. I felt weak and insecure. But I think the most important thing was that I felt something.

I am currently working on weaning off the Cymbalta and finding another treatment for the neuropathy. The withdrawal side effects can be nasty but I already feel like a weight has been lifted off my shoulders. I spent the morning elbow deep in paperwork and making phone calls to my doctors’ offices and while it is overwhelming (and exhausting), I feel like I am moving forward and feeling positive again. I am looking forward to being more active and writing again. I am reading to take back the reigns in my life. My daughter deserves it. My husband deserves it. I deserve it.

My word of caution in writing this post is to take the possible side effects of medications seriously. All of them. I think its so easy to write off some of the potential side effects because they are considered rare or unlikely. It is important to know as much as possible about the medicines and treatments you take and be in tune with your own body.  I have found myself questioning why I did not pick up on the problem sooner. When you have chronic illness, especially if you have multiple illnesses, it can be so easy to attribute symptoms to a previously diagnosed problem versus them alerting you to a new problem or imbalance. It took someone on the outside per se to help me notice that something else might be going on. Not only is it important for you to be aware of your mediations and their side effects but also your family and support circle.

I want to say thank you to each and every one of you for the support that you have given me over the years (can you believe that A New Kind of Normal has now been around for over 6 years?!?). It is because of your support, love, and encouragement that I am able to share my story and hopefully help others who may be traveling a similar journey. You are amazing.