#MigraineComorbidity: Living with Multiple Conditions

Lately, I’ve been collecting diagnoses: migraine-associated vertigo, panic disorder, MTHFR deficiency, PTSD, IBS, seropositive RA … The list just keeps growing. Migraine, it seems, is a disease that gets along well with others — or at least enjoys bringing them along for the ride. (I, for one, would be happy to let a couple of these guys off at the next stop, but no one’s asking me.)

Anyone living for long with chronic migraine knows that comorbidities occur frequently. However, I was surprised to learn — until I started my own personal collection — just how many there are. For instance, while I knew that migraine with aura was associated with vertigo, MTHFR deficiency, anxiety, and PTSD, I had less knowledge of the link between migraine and IBS and no knowledge at all of the link between migraine and Rheumatoid Arthritis. While knowing about something doesn’t necessarily change the prevalence of it, I think it would have helped to be prepared.

Juggling multiple conditions isn’t easy, especially when the medications used to treat one disease (e.g. RA) tend to exacerbate another (e.g. migraine). Doing so while working, raising a family, and nurturing a strong marriage is even harder. But I’m not one to let the difficulty of a task faze me.

I started my migraine journey with the determination to figure out how to live the best, most joyful life possible, and I have no intention of stopping now. The journey may be a little rockier, and slightly more precarious, than I had anticipated, but it is the journey I’m on. I fully intend to find the magic moments and silver linings, and I’ll continue to write and share about my progress (the good and the bad) as I go.

Chasing sunshine

 

Moving + Holidays = Not a Great Idea

Living with chronic illness uses up a lot of spoons. As does moving. As do the holidays.

Putting them all together then isn’t a good idea.

And yet I did it anyway.

I do a lot of things anyway (like saying “yes” to “one more” project when my plate is already incredibly full, going to concerts, drinking beer, and staying up way too late on occasion) because life is too short to let a couple of diseases run how I live it, but this one may not have been my best call. Moving at Christmas is simply not an easy task. It takes a lot of spoons.

Calling to set up new services. Calling to cancel old ones. Packing. Reserving, picking up, loading, unloading, cleaning, and returning the U-Haul. Unpacking. Setting up. Decorating the tree, twice. Buying a fridge and food to fill it. Making said food.

It’s a lot of spoons, y’all. Just. A lot. 

Add the fact that both of my kids were out of school and underfoot in a new neighborhood with no friends, and I believe I must have been temporarily out of mind to agree to such a thing. Surely.

I did take ten days off of work to accomplish the task, which made me optimistically believe I could survive the month of December without triggering a migraine flare. Of course, that didn’t happen. I ran out of spoons on about the third day and spent a great deal of my vacation trying to do everything I needed to do while feeling nauseous, dizzy, and like I wanted to bash my head in with whatever was close at hand.

Thankfully, this has passed. We’re settled now, and things — including my brain — are starting to regain some sense of balance. Mostly.

One of the things that happen when I experience a severe migraine flare is that my right arm acts up. It gets weaker and sometimes chooses to ignore the tasks my brain assigns to it. It also hurts.

Thankfully, I found something that helps the nerve pain: the Salonpas products. A while back, the company sent me some free samples for my review on this blog (full disclosure). I don’t generally put too much stock into such items because I’ve been duly unimpressed with almost as many free trials as I’ve been given, but these were different. These — especially the lidocaine cream and patches — worked.

I’m still using the products because my migraine hasn’t completely returned to baseline yet, and my hand and arm are still wreaking havoc on my ability to type, cook, and bathe. Since I also gave a sample to a relative with fibromyalgia (who says it’s helping her, too) and I’m almost out, I’ll be ordering some soon to add to my migraine toolkit. You know, for when I — inevitably — run out of spoons.

Vacation Lessons and Wellness Wednesday

PaloDurobackyardview

I recently spent a week with my husband doing little but looking at this view of the Palo Duro Canyon from our rented patio, stargazing from the outdoor hot tub, and relaxing. We unplugged completely. No news. No work. No social media. No other people.

It was heaven, and I didn’t have a severe migraine attack the entire time we were there.

The low-level pain, nausea, and vertigo of the ongoing disease are almost always present, but that’s where they stayed. At low levels, in the background. No major attacks. No big flares. It was the most peace I’ve had in months.

When we came back, I immediately had to do what we all have to do when we get back from vacation: I had to make up for being away. My first day back at work was a “regular” Monday. I clocked 13 hours, made my family three meals (plus snacks), cleaned here and there, served as partial entertainment for a four-year-old boy, and kept my ears tuned to the TV and social media for updates on Harvey, my city, our (flooding) surrounding areas, and our friends (many of whom were evacuating.)

By 1 p.m., my pain level and other symptoms had increased with a vengeance.

While I expected this, it still got me thinking. What can I do to reclaim a little of that Palo-Duro peace for myself during the regular week? How can I take care of myself, and my health, like I did over the course of those blessed and restful days?

I recently read a post from another writer talking about reclaiming Wellness Wednesday as a day for health. She said she was going to spend each Wednesday, taking the entire day off and nurturing her body and her mind. This idea intrigues me.

I’m not sure I’m capable of making that kind of commitment right now, as I have so many other commitments already. But I’d like to try. At the very least, it will remind me that I need to prioritize myself and my health just as much as I prioritize everything else. We women, especially those of us who are moms with chronic illness, tend to need that reminder.

What about you? Do you do anything on a regular basis to prioritize your well-being and your health? What is it? 

Presents for Your Loved Ones with Chronic Migraine

It’s my birthday soon, and so I’ve been thinking of presents. Of course, the things I’d really like – pain-free days, the ability to schedule events weeks in advance without fearing I’ll need to cancel, and a brain that allows me to eat cheese – no one can give me. Still, I knew there had to be something I’d want.

And there is.

After days of being too sick to eat, yet in too much pain to make the smoothies I can tolerate when nauseous, I realized a replacement blender might be in order. You know, one of those that doesn’t sound like a jackhammer or a jet plane or any other number of earsplitting objects that make me want to slam my head against the wall. And, it turns out they make these, some for not even all that much.

They also, it turns out, make vacuums that you don’t have to push. (For a price, of course, but less than you might think.) These little robots can move around your house, diligently cleaning up the ridiculous piles of German Shepherd hair that seem to get everywhere even when the dog has been bathed, brushed, and put outside. For someone like me, who is incredibly allergic to said hair and yet can’t always get out of bed or off the couch to vacuum it up and still have the energy left to make the dinner my kids will spill all over the floor, that’s big news.

So that’s what I want. A robot vacuum cleaner and a blender that doesn’t make me want to split my head open with an axe. I feel so adult. And boring.

You Know You Have Chronic Migraine When ...

Still, if you have someone in your life with chronic migraine, consider whether they, too, would like such boring but amazingly thoughtful gifts. If not, consider one of these replacements:

  • A month of healthy pre-made dinners and snacks from a service like Factor75, Splendid Spoon, or Healthy Chef;
  • A one-time maid service;
  • A one-time car detail;
  • An anti-glare screen for a computer monitor;
  • Migraine-specific glasses, like Theraspecs.

Basically, anything that makes life easier, cleaner, and/or more tolerable is a good thing. Any other ideas? Please share in the comments. I’d love to hear them!

An Open Letter to My Pre-Migraine Self #migraine #chronicillness

You are about to go through hell. In more ways than one.

You are going to spend your days in bed, squeezing your eyes together in pain because even the covers hurt. You are going to be too dizzy to stand, too nauseated to eat.

You are going to take pills that prevent you from eating. You are going to take pills that cause you to eat. You are going to lose too much weight. You are going to gain weight. You are going to drink too much. You are not going to be able to drink at all.

You are going to see pink dots circle around each other on your ceiling, pulsing in time to your heartbeat. You are going to experience moments when you feel larger than the houses you are driving past.

You are going to doubt your sanity.

You are going to get shots in the nerves of your neck, and feel more agony than you could have ever imagined.

You are going to lose your confidence in yourself.

You are going to lose yourself.

You are going to get depressed and anxious. You are going to wonder if you can take it, if living like this is worth it.

Let me tell you this: It is.

Yes, you are going to suffer. Yes, you are going to run up against the edges of what you can take, emotionally, physically, mentally. But, guess what? You are going to arise stronger, more authentically you.

Don’t get me wrong; this is going to take time. But, it will happen. Trust me. So, don’t worry about the future. Instead, do me a favor:

Go dancing, all night. To loud, thumping music that makes you throw back your head in laughter and delight.

Stay up until 3 a.m. talking and making love. Do it again the next day. And, the next.

Find out when all your favorite bands will be in town, and go see them. Stand near the front, where the smokers and dancers are, with a large pint of beer in your hand and a smile on your face.

Run, as fast and as far as you want to. Take hours-long walks in the summer sun. Spend all day hiking by the creek, and swimming at Barton Springs.

Take overnight trips to exotic destinations. Carry nothing but a small purse with you.

Eat bowl after bowl of queso, and slice after slice of four-cheese pizza. Eat as much of your favorite foods as you like.

Read all night long, even if you have to get up early to work.

Do these things.

Trust me. Do these things now, while you can, so you can enjoy the memories you make when you can do them no longer.

Watching for Signs of Migraine in Our Kids

My 11-year-old daughter frequently complains of stomachache. She hasn’t eaten too much. She doesn’t have a stomach bug. Yet, she complains, again and again, that her tummy hurts.

Suffering from chronic migraines as I do, I know too well how frequently pain can arrive and torment us – even when there’s not a “typical” reason. Yet, as her mother, I am unsure how to react.

My daughter, you see, is notorious for trying to get out of work.

Whether it’s a chore she doesn’t feel like doing or a page of homework that appears at first glance too overwhelming, she’s quick to cry defeat and (quite literally) hide under the table or in her closet. (Yes, I know this isn’t age appropriate or “normal.” No, there isn’t anything to do but wait for her to get her embarrassment and frustration under control.) In short, her intense emotions get to her and she gives up easily – much, much too easily. Though our year of homeschooling has gone a long way toward increasing her confidence and decreasing the instances of such behavior, it still occurs.

So, as a fellow pain sufferer, I want to hold her hand, comfort her, and give her whatever she needs to feel better. As her mother, however, I’m conflicted. I do not want to deny her her reality, but I do not want to let her use it as an excuse. And yet, I know how many of us with invisible illness – myself included – work tirelessly against stigma and the idea that we are “faking” our symptoms so we have an excuse to be lazy. I do not want to make my daughter feel like that.

Often, I tell her that I understand her tummy hurts and that I’m sorry. Then, I say that as soon as she gets finished with whatever it is she needs to do, I will make her soup and get her tucked into bed. Sometimes she takes me up on this. About half the time she decides she is well enough to go out and play after all.

What would you do? I’m sure her stomach does hurt – either from stress and anxiety or abdominal migraine (which can’t be ruled out) – but I don’t know how to respond.

Lots of Happenings Here

It’s a new year, and I have to say I am pumped about 2014 already! There’s a lot going on over here, what with this blog getting nominated for an award (more info on that soon), me getting asked to be a regular contributor for Migraine.com (see my first post here: http://migraine.com/blog/five-ways-to-manage-holiday-season-triggers-without-medication/), and my son doing his awesome toddler thing. I’m also teaching a writing class this semester and releasing a new book soon. Whew! (I’m tired already.)

Here’s hoping you all have a fantastic January and an even better 2014. I look forward to hearing from you and communicating with you throughout the year.

Thank you for reading! I’m so blessed to have each and every one of you in my life.