Disclaimer: Nothing on this blog is intended as medical or legal advice.

What I write on this site is my own, and if it is someone else's, I take special care to attribute it to the original author. So, please don't use any of my material without proper attribution or permission. Thanks.

Monday, September 15, 2014

Status Migrainosus: A Difficult Week

I'll warn you (and apologize) up-front, this post may be kind choppy...

This has been one of the worst pain weeks I've had in a long time. I've taken migraine and pain meds (maxed out) and rested a lot. My doctor prescribed a round of corticosteroids, which hasn't seemed to offer much relief.

Status migrainosus is basically a severe intensity migraine that is unremitting for more than 72 hours. Now, I have some degree of head pain every, single day. I have chronic migraine, which means that I have migraines 15+ days per month. And, yet, I get these status migraines that I seem to have no way to prepare for. I know, intellectually, that at some point the pain will break. But, it doesn't seem like it, in the midst of the pain, especially when nothing (meds, coping skills, etc) is offering any relief.

Sleep Disturbance
My sleep pattern is completely insane. Since this horrible stretch of migraine pain began, my hours slept per day (can't say per night because some nights were no sleep, but a nap during the day) have been:

  • 8.25 hours
  • 3.50 hours
  • 9.00 hours
  • 3.25 hours
  • 17.00 hours
  • 0.00 hours
  • 15.75 hours
Talk about out of whack! Hypersomnia intermixed with insomnia... quite a toxic combination.

Memory / Processing Problems
Early this week (day 2 of severe pain), my memory was so bad... it was scary! My mind wasn't working at all - I would forget what I was saying, mid-sentence. My difficulties with memory and processing hasn't been that bad in a long time, and it reminded me of some of the struggles I had following my car accident. Strangely, though, I was inspired (and somehow able) to write a blog post, start to finish - When Your Pain is Invisible: You Look So Good. Honestly, I sometimes have more inspiration to write, when I'm at my low (not lowest) points... in the darkness... it's weird.

Irritability
I know that I've been extremely irritable, and not doing a very good job of filtering it. I've found myself snapping easily. It seems uncontrollable, out of my hands. I'm easily frustrated and/or annoyed by the dog, my husband, anything, everything, nothing...

Visual Disturbances
The visual issues I've faced with this migraine attack have been expansive. Aura, blurry vision, trouble focusing, see flashing lights (in all different lighting, from a dark room to bright outside).

And More...
If all of that wasn't enough, there have been so many other symptoms (many more than I'd like to write here)... aphasia, allodynia, hypersensitivity, vertigo, anxiety, depression, fatigue, and the list goes on...

Oh Yeah, Head Pain
If you noticed, I didn't even really mention the incessant head pain, and the neck and back stiffness and pain. The horrendous and unceasing nature of the pain has been paramount in my week... I can't seem to find relief.

Grateful
I will say, though, that I'm grateful to have been able to spend a little time out at a friend's (wedding) couples shower Saturday evening, and with my Mom to visit my grandmother in the hospital Sunday evening. I can't say that it didn't take a lot out of me, or even that it really even distracted me from the pain, but I'm glad that I could be there for those that I care about.

Wednesday, September 10, 2014

World Suicide Prevention Day

This week (September 8-14, 2014) is the National Suicide Prevention Week.

Today (September 10th) is World Suicide Prevention Day.

The American Foundation for Suicide Prevention (AFSP) states:
"Suicide claimed 39,518 lives in 2011 in the United States alone, with someone dying by suicide every 13.3 minutes. A suicide attempt is made every minute of every day, resulting in nearly one million attempts made annually."
The AFSP sponsors Out of the Darkness Walks, where "you join efforts with thousands of people nationwide to raise money for AFSP’s vital research and education programs to prevent suicide and save lives. The walks raise awareness about depression and suicide, and provide comfort and assistance to those who have lost someone to suicide."

Some dear friends of mine will be participating in their community's Out of the Darkness Walk on September 20th. I will be offering my prayers, support, and encouragement.

More information about suicide prevention can be found:
You Matter, Let Us Help You Through
American Association of Suicidology
National Suicide Prevention Lifeline
World Health Organization

If you, or someone you know, is in suicidal crisis or emotional distress, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255).

Tuesday, September 9, 2014

When Your Pain is Invisible: You Look So Good

A devotional, When Your Pain is Invisible, really resonated with me today. This morning, when I read this devotional and listened to the song below it, I felt moved to write.
"You look so good." 
Why did that comment bother me? 
I knew each person who said it meant to say they were glad I didn't look sickly. 
Still, it bothered me every time I heard it. Why? 
Was I afraid they thought I was exaggerating my discomfort or faking it? Was it pride? Did I desire attention? Did I want pity? Certainly not. 
So, what was it? 
     ~ Excerpt from When Your Pain is Invisible 
This piece of the devotional really jumped out at me, as I've struggled with the same grievance.

When someone says, "You look so good," I've found myself feeling enraged, distraught, and deceptive. Then, upon reflection of such encounters, I find myself feeling guilt and shame for having those emotions. My mind starts questioning what made them emerge: "Was I afraid they thought I was exaggerating my discomfort or faking it? Was it pride? Did I desire attention? Did I want pity?"

How could a comment as innocuous as "You look so good" evoke such strong emotions and striking questions?

This intrigues me because I don't want to act out of fear, pride, and/or desire for attention. Just as the song found at the end of the devotional, "Do Everything" by Steven Curtis Chapman (a link to my other blog, where you can access the song), I want "to do everything you do to the glory of the One who made you."

As for the swarming questions, I've come up with various answers / theories / explanations, but the answer found in the devotional is so simple and spot on:
"I wanted them to understand."
I think that everyone has a desire to feel understood, and to have their experience validated.

Suddenly, I realized that that's exactly where the conflict lies.

When we're hurting (especially when we're hurting in ways that others cannot see), I think we guard ourselves... perhaps because our pain has been misunderstood, ignored, and/or discounted in the past... or we fear that it will be. If we don't feel like our pain / experience is validated, believed, or understood by the other person, a comment as innocuous as "You look so good" can push us over the edge.

Ironically, when we live with one or more invisible illnesses, especially if chronic, we may have spent a lot of time and energy to "look so good." So, it seems odd that we would then feel somehow slighted, when someone comments on how we look.

I think it partially depends on who is commenting... For example, I find myself feeling more receptive to a comment about how I look from those that I know really understand how much pain I live with. Perhaps because I don't feel like their comments are discounting the pain I'm in - they know I'm in pain, but are simply giving me a compliment.

In light of all of this, I'm trying to remember what's most important: "The eyes of the Lord are on the righteous, and his ears are attentive to their cry" (Psalm 34:15). He understands my suffering. He hears my cries. Regardless of whether others do. And, for that, I'm so grateful.

Monday, September 8, 2014

Invisible Illness Week 2014


September 8-14, 2014 is Invisible Illness Week. This year's campaign is "You may be just one... but you are JUST ONE... of over 100 million." There are some great resources on the website - check it out, here.

30 Things About My Invisible Illness You May Not Know

For the last four years, I've written about 30 Things About My Invisible Illness You May Not Know (201020112012, 2013). Some of my answers are the same or similar. But, I think it can be good to review how you've answered these questions in the past, so you can see where you were and how far you've come.

1. The illness(es) I live with is: Chronic post-traumatic headache/migraine (intractable, with and without aura), anxietydepressioninsomniairritable bowel syndrome
2. I was diagnosed with it in the year: Chronic migraines - 2008 (after a car accident). The others were diagnosed around 2002.
3. But I had symptoms since: dealt with headaches (and some migraines), anxiety, depression, insomnia, and irritable bowel syndrome since (at least) my teenage years.
4. The biggest adjustment I've had to make is: not always being able to take care of myself / depending on other people so much.
5. Most people assume: that nothing is wrong with me and/or that I can't hurt as much or often as I do.
6. The hardest part about mornings are: getting up without feeling rested, and  not knowing how much pain the day will bring.
7. My favorite medical TV show is: House, Lie to Me, CSI
8. A gadget I couldn’t live without is: my cell phone
9. The hardest part about nights are: getting to (and staying) sleep, especially when the pain is bad.
10. Each day I take __ pills & vitamins: I'm not really sure, but actually fewer than I've taken in quite a while.
11. Regarding alternative treatments I have tried: massage, physical therapy, chiropractic, biofeedback, relaxation, essential oils
12. If I had to choose between an invisible illness or visible I would choose: Neither. There is so much stigma attached to both of them.
13. Regarding working and career: I have been unable to work since the accident in 2008. I tried to return to graduate school for a year, but ended up taking a leave of absence and then made the difficult decision not to return. Since then, working and/or school hasn't even been an option.
14. People would be surprised to know: I am in pain (often severe) every single day... all day, every day.
15. The hardest thing to accept about my new reality has been: that I have changed, and things will never be the same. I have limitations that I have to live within, or pay the (often very high) price.
16. Something I never thought I could do with my illness that I did was: allow myself to be vulnerable, which has allowed me to touch other people's lives in ways that I wouldn't have been able to otherwise. God is showing me that He still has a purpose for me.
17. The commercials about my illness: are very misleading as to what migraine really is and how debilitating it can be. The one about chronic migraine, where the lady is laying on the couch and everything is happening around / without her, is a bit more realistic.
18. Something I really miss doing since I was diagnosed is: This could be a very long list... I miss being able to actively participate in life, though I'm doing the best I can (taking it one step at a time).
19. It was really hard to have to give up: who I was before the accident... I still haven't completely let go of that yet. It's also been really hard to give up going to church (the noises, smells, lights, crowds, etc are just too much for me to deal with).
20. A new hobby I have taken up since my diagnosis is: blogging
21. If I could have one day of feeling normal again I would: have no idea what to do with myself (assuming "normal" is feeling "good," not what my "normal" has become)! I don't even know what life without pain is anymore.
22. My illness has taught me: to recognize the strength that I DO have. It is teaching me to TRUST God more... but it is definitely a long and difficult process.
23. Want to know a secret? One thing people say that gets under my skin is: Migraines are just bad headaches; take some pills and keep going / move on, it can't be that bad.
24. But I love it when people: accept me as I am, within the limitations of what I can do. Show that they care. Even just little things like: being aware of how bright a room is, asking if the TV/radio is too loud, rubbing my neck/shoulders/head, being considerate at a restaurant by allowing me to sit facing away from windows.
25. My favorite motto, scripture, quote that gets me through tough times is:
  • "Be still, and know that I am God" (Psalm 46:10)
  • "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:2-4)
  • "You will seek me and find me when you seek me with your whole heart" (Jeremiah 29:13)
  • "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight" (Proverbs 3:5-6)
26. When someone is diagnosed I'd like to tell them: keep yourself informed - research things online, ask your doctor questions, do your best to understand and articulate your experience with your disease/illness. You are NOT alone - join social media, church, or other support group(s) to help you through the difficult times that you will go through. Be ready for a roller coaster ride of ups and downs.
27. Something that has surprised me about living with an illness is: how strong, yet vulnerable, I can be. Everything I do has to be a conscious decision to use my energy for that specific thing (even seemingly basic things, like taking a shower).
28. The nicest thing someone did for me when I wasn't feeling well was: take care of me... When I have a bad migraine, my husband does everything he can to take care of me (feeds me, makes sure I take my medicine, massage my head/neck/shoulders/back/feet [if I can handle being touched], make sure I'm in a dark room and am as comfortable as I can be, and anything else that I need).
29. I’m involved with Invisible Illness Week because: I feel that we need to speak out to raise awareness, increase research, and help correct misinformation. Invisible illnesses are real and affect so many, but are widely misunderstood and stigmatized.
30. The fact that you read this list makes me feel: heard/validated, and hopefully a bit better understood.

Monday, September 1, 2014

The Battle for Sleep Continues

I've written about my My Ongoing Battle of Sleep before. Unfortunately, the battle continues.

My sleep has been a huge obstacle and struggle lately, even moreso than normal... which is really saying something. I'm not sure exactly why, though I know that pain, anxiety, depression, and some of my as-needed migraine meds all play a role.

Making things more frustrating, I can be dozing off on the sofa (to the point that I can't keep my eyes open)... but, by the time I get to the bed, I struggle to get to sleep.

It's been worsening quite a bit over the past month. I'm almost on an opposite sleep schedule - getting to sleep around the time most people are getting up for the day, and sleeping into the afternoon.

I've tried different meds, essential oils, hot showers, hot/cold packs, a lot of the typical "sleep hygiene" ideas, etc. I keep trying to go to bed at a more normal time, but I sometimes find myself so restless that I could hardly stand it. So, I'm trying to get my body back on track... it's a wearisome journey.