30 things you may not know
You may not know this about my invisible illnesses…
I participated in Invisible Illness Week in 2011 as a way to see if I would enjoy blogging, It turns out I love it. So take a look and let me know what you think about my progress since 30 Things, 2011.
The illnesses I live with are: Episodic Migraine with Aura, Chronic Cluster Headache, Fibromyalgia, and Obstructive Sleep Apnea.
I was diagnosed with Migraine in 1985, Cluster Headache in 2000, Fibromyalgia in 2012, and Sleep Apnea in 2011.
But I’ve had migraine symptoms since 1974. Cluster headaches started in 1999. Fibromyalgia showed up in 2009 after catching NIHI influenza. I’ve had symptoms of Sleep Apnea all my life, but didn’t know it was a problem until a neurologist sent me for testing.
The biggest adjustment I’ve had to make is: learning to embrace my limitations and create strategies accommodate my health needs on the go.
Most people assume I haven’t heard about or tried most treatments. The truth is that I hear about potential treatments a lot sooner than the general public. If I haven’t tried something, it’s because my doctor and I don’t think it’s appropriate at this time.
The hardest part about mornings is making myself move. I am so stiff and sore, it can be tempting to stay in bed all day. I have learned from experience that pushing myself first thing can make a difference for the better in how I feel all day.
My favorite medical TV show is: Royal Pains. However, I was not happy with their episodes on Migraine. They were spot-on about the dangers of taking too many pain medicines, but they made it seem like the only other alternative was biofeedback. That’s a slap in the face to those of us for whom biofeedback didn’t work.
A gadget I couldn’t live without is my laptop. It is my lifeline to the outside world when symptoms threaten to shrink my existence down to the four walls of my bedroom. Unfortunately, it died recently and I had to make do borrowing my husband’s desktop until we could get me another one. Talk about family stress!
The hardest part about nights is making myself go to bed. It’s a delicate balance. If I go to bed before I am sleepy enough, I will lay awake for hours. Yet, if I wait too long, I won’t get sleepy and then I end up sleeping in too long the next morning. Lack of sleep is a big trigger for both migraine and cluster headache so it’s important to keep trying.
Each day I take nine pills & vitamins, one nasal spray, and sleep each night with a CPAP. When I have symptom flares, I take an additional 3 pills, 1 injection, 1 nasal spray, 1 suppository, plus inhalation of 100% oxygen from a non-rebreather mask.
Regarding alternative treatments: I’m an herbalist and Reiki Master, plus I ran a health food store for 5 years and an e-commerce version for 10 years. So what do you think? However, I have yet to discover any alternative treatments effective enough to prevent my attacks or stop one in progress. I don’t like using pharmaceutical options but they are the only thing that helps for the moment. That doesn’t mean I will stop looking for alternatives.
If I had to choose between an invisible illness or visible I would choose: to accept my life as it is. My daughter recently shared a nugget of wisdom that applies to this situation, “Sometimes the grass is greener on the other side. That’s because it’s astroturf.” Wishing for anything other than what I have is just a fantasy. It’s not real and it never will be.
Regarding working and career: I loved my job and really miss it. If I could ever get to the point that my symptoms won’t force me to constantly postpone, cancel, or reschedule appointments, I would love to see clients again. It brought me great satisfaction and a nice paycheck.
People would be surprised to know: that I have a violent, profane, sadistic streak that appears when cluster headaches attack. Nothing else can bring out the untamed beast in me. Frankly, it is only that feral side of me that can survive a cluster attack.
The hardest thing to accept about my new reality has been: limits. I don’t like to be told what to do. how much to do, when to do it. It’s even tougher because there isn’t a physical target for my frustration. My own body is setting the limits.
Something I never thought I could do with my illness that I did was: be my daughter’s labor coach. The morning she went into labor, I started a nasty cluster cycle. I took everything I needed to cope with us to the hospital. By some miracle, I only needed one treatment. Watching my baby girl give birth to her baby girl was the most amazing experience of my life!
The commercials about my illness disgust me. No one “has time for a migraine” and taking OTC pills “at the first sign” is a really good way to develop Medication Overuse Headache which can lead to Chronic Migraine, poor response to real migraine treatments, depression, and ultimately suicide. All that acetaminophen can damage your liver. The aspirin can damage your esophagus and destroy stomach lining. Too much caffeine can trigger migraines or cause caffeine-withdrawal or caffeine overdose headaches. How is encouraging people to take this medicine responsible at all?
Something I really miss doing since I was diagnosed is: believing the delusion that some day headache disorders would not control my life. Reality bites.
It was really hard to have to give up: my career. 10 years of schooling and almost $100K later and I only got to practice for a few years. The disappointment was enough to throw me into a deep depression and almost cost me my life. It has been a tough challenge to remake myself into someone I thought was worthy of love and respect without a career.
A new hobby I have taken up since my diagnosis is: blogging. It took me a very long time to accept blogging as a viable way to cope with my symptoms. Now I don’t know what I would do without it! Being able to express myself, encourage, and educate others even when I am stuck in the dark, quiet cave of my bedroom helps keep depression under control.
If I could have one day of feeling normal again I would: probably rush around trying to cram in as many things as possible, knowing it wouldn’t last and eventually crash from a fibro flare. I wish I could say that I would take the day off to be with my family and friends, enjoy life, and play. Unfortunately, my invisible illnesses give me just enough “normal” days to tempt me. I’ve learned not to believe them anymore.
My illness has taught me: to embrace good days, adjust to surprises, accept limits, and never give up no matter how hopeless it seems.
Want to know a secret? One thing people say that gets under my skin is: “Have they found out what’s causing that yet?” and its cousin “Have you had and MRI/CT scan?” Umm, no they haven’t. That’s why it’s a genetic neurological disease with no known cause or cure. And yes, I’ve had many expensive tests that show absolute nothing. My illness is so invisible, even the doctors can find proof it exists!
But I love it when people say: “You look amazing. I’m so happy to see you.” That tells me who my real friends are. It doesn’t matter how long we are apart, they are always glad to see me. I don’t get scolded for not calling or any lectures about stopping by more often. We just enjoy the time we have.
My favorite motto, scripture, quote that gets me through tough times is: There really are a lot. In the past I have shared a passage from II Corinthians 12:9 that says, “My grace is sufficient for you, for my power is made perfect in weakness.” I also like the Eleanor Roosevelt quote, “Well-behaved women rarely make history.” In order to fight the depression that has followed my invisible illnesses, I have developed a collection of inspirational quotes that remind me to think of good things. Most recently, I have returned to The Four Agreements for inspiration.
When someone is diagnosed I’d like to tell them: find a good headache specialist who will never tell you “you’ve tried everything” and will challenge you when you’re ready to give up.
Something that has surprised me about living with an illness is: how lonely and isolating it can be even when surrounded by people who care.
The nicest thing someone did for me when I wasn’t feeling well was: to show up with food, drink and a whisper. Honestly, the whisper and company is often good enough. My kitchen is usually stocked with easy, pre-made healthy snack options. It’s the isolation that gets to me. Having someone stop by to say hello when I am hurting is a blessing. Most people don’t want to disturb me when I am in pain. However, company is exactly what I crave. I am so bored and I need some distractions from the unrelenting waves of pain. Plus, I miss my friends. Just whisper, please. The human voice at its normal volume feels like sonic booms.
I’m involved with Invisible Illness Week because: I do so much within the Migraine and Headache disorders community that it sometimes feels like I am “preaching to the choir”. It was time to mix it up a little to reach a wider audience.
The fact that you read this list makes me feel curious. I wonder why you stopped to read it. Did it change your mind about headache disorders? What will you do differently as a result? If you get nothing else, please remember this: migraine and headache disorders are serious neurological diseases that deserve serious time and attention. People do die from migraine complications! We aren’t “faking it”. We are fighting for our lives!