• Shannon Burkoth

The disappearance of "Me"

So now its time to get personal. Ive written a few blog posts now, basically reviews on some recent events I've been able to attend on Rare Disease and Narcolepsy advocacy. I feel empowered to tell my story. Life is not easy sometimes, we all have our burdens to bear. I truly believe God uses these moments in our lives to help others along the way. This post is really personal for me, but I write it with a vulnerability to allow others to see hope. Here we go...

I have always been an independant and somewhat stubborn woman, my husband of 20 years will agree. I went from college, to working my way up to managing a 77 chair dental clinic, to becoming one of my areas top 10% in Real Estate Sales. I was also a wife, mother, PTA Mom, volunteered at my church in the nursery, as a youth leader and AWANA leader, managing my household, having a healthy social life to slowly slipping away into almost complete isolation.

As my symptoms got worse and the exhaustion took over, I slowly starting dropping these extras in my life. I didnt know what was going on and my doctors blamed it all on my fibromyalgia, but I knew there had to be more to it. I started falling asleep at home, forgetting appointments with clients, scheduling work and activities around naps. I was constantly in pain from my fibromyalgia and arthritis, also experiencing frequent migraine headaches. I was overwhelmed to say the least.

After my diagnosis of Narcolepsy with Cataplexy we tried different stimulants to keep me awake and alert during the day. This brought about symptoms that led to another diagnosis, cardiomyopathy. Because of the heart disease I could not take any stimulants. I also tried the ONLY FDA approved drug for narcolepsy, Xyrem, and had an allergic reaction to it. After trying several different alternative meds, nothing helped. We discovered that I was having peridoxical effects to a lot of the medications I tried, especially pain meds. I would take the medication, feel all the lousy side effects but did not receive any of the relief the meds were meant for. This reaction is sometimes found in people with narcolepsy and I drew the short straw. I also gained 40 pounds in 6 weeks from all the medications! My sleep studies showed that I received very little stage 3 & 4 sleep, which is when your body repairs and heals itself, hence no relief from my daily chronic pain. Because I could not control my symptoms of sudden onset of sleepiness, brain fog, anxiety, cognitive impairment, chronic pain, etc, I became a liability in the workforce and had to face the harsh reality that I was disabled at the age of 35.

I fell into a depression. I didn't know who I was anymore. I felt useless. Everything I had worked for, my education, my career, volunteering, keeping up my house....I felt like I was letting everyone down. My nickname used to be "Smiley" (even voted best smile in my senior class), and now it was "Sleepy", I wanted Smiley back! I was embarrassed, I didn't tell a lot of people what was going on, I just disappeared into my own little world and hid there for a long time. It is frustrating to have a disease that others know little to nothing about, or is stigmatized because of the way it is falsely portrayed on television or in the movies, or you dont "look" sick. Even the doctors and nurses knew nothing about it unless they specialized in sleep medicine. Doctors would even say to me that they were tired and would like to take naps, even to suggest that maybe they had narcolepsy and laugh. I promise you, Narcolepsy is SO much more than a sleep disorder, its actually very intriguing if you look it up or check out my website. I've also learned that doctors only receive ONE day on sleep medicine in medical school, something that the narcoleptic community is working on changing as we see the benefits of sleep has become a hot topic lately. The biggest compliment a friend can give me is to say that they looked up what narcolepsy is, that they care about me enough to educate themselves on what I am going through. I think everyone with a rare disease, or any disease/disorder appreciates that. I am still working on my 30 second elevator speech though...hard to condense all of it!

I think it took me about 2 years until I could talk about it openly without crying. I remember a friend had given me a book called "Finding your Strengths", shortly after I "retired", I took the test online and didn't know how to answer the questions, do I answer them as the old independant Shannon or the new and defective Shannon? I had lost my identity!

I was still lost for purpose in my life, my husband would tell me my purpose is to be a Mom and a wife, but I feel like I wasn't even doing that well! I feel a lot of guilt for not being able to do everything I once could. Just taking a shower in the morning is exhausting. I wasn't working but still couldn't keep up with my household chores and was too tired to cook dinner by the time Doug came home from work.

I'm now seven years out from my diagnosis of narcolepsy and cataplexy (I've probably had it since my late teens). I have added a few more diagnosis' to my medical chart; Sleep Apnea, Chrohns Disease, and Dysautonomia. It has been a grieving process... denial, anger, bargaining, depression and acceptance. I've also gone through this cycle more than once, I have my ups and downs still. I have truly been trying to put myself back out there these past 2 years and be more involved. Sometimes it works, sometimes I over do it and pay for it, and sometimes I start slipping back into isolation because I failed or don't want to show people my narcoleptic/cataplexy symptoms. This last winter was hard for me, my depression crept in again and I was disappointed in myself for not being over it already. Acceptance of my limitations is an on-going process for me, but I'm trying!

I now have an army of specialists, all in Chicago, about a 45 minute drive to which I need a driver for since my drivers liscence is restricted to a 15 mile radius from my home (I actually did not drive at all for 2 years). I hate asking for rides, it's my independance being bruised again, but my family and friends truly do not mind, I call them my cheauffers! I've made adjustments in my life, I can't do everything I want to do, I still have to plan my days around a nap to hope for the best case scenario to happen. Every day is different. A trip to a doctor appointment in Chicago and back, or a trip to the grocery store alone will use up all my "spoons" for the day.

These past six months I have gone to three conventions, educating myself on how to better advocate for myself and other people with narcolepsy and other rare diseases. These conferences came about in such a wonderful way and at the perfect time (I received scholarships to attend each one including airfare and hotel). I've met other people dealing with the same struggles and I didn't feel so alone. I know that God will use my experiences to help others. I am passionate about rare disease and the hope that comes from knowing a good and gracious God. While searching for God's purpose for me through all of this, a good friend told me that God simply wants me to "bloom where I am planted". Several years later, I think I finally can!

My husband has been my rock. This is not the life we had planned or imagined for ourselves. He has stuck by my side in sickness and in health, in good times and bad times, dirty house or clean, laundry and dirty dishes piling up. God has blessed me with a man of strength, a RARE breed of his own that refuses to give up on me even when I'm ready to give up on myself. I've even offered him an "out", a "get out of jail free card", that I would understand if this was too much. This offer actually angered him, he said it wasn't even a thought and that I was stuck with him. God is good! We have been married 21 years now and have a beautiful 13 year old daughter together. Thankyou for being my "person", Doug Burkoth, I love you!

A special thank you to my parents, my in-laws, my church family, my friends that have weathered the storm with me and continue to, you are a blessing in my life and I love you all!

#narcolepsy #NarcolepsyNetwork #Advocate #RareDisease

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