Posted this to my migraineur peeps today as this post from 2012 came up in my Facebook feed. This may have been my last 3 day low/no pain run. It was a short run, to be sure.
In describing life before #ChronicThugLife, Selena (a fellow migraineur) said, “I can remember that life [before CM] but I can’t remember how it felt anymore.”
The words really struck me; they describe my reality and my thoughts perfectly. I remember a time when I fell ill with migraine maybe once a month, maybe once every three months. I think I would be ill a few hours, unlikely the entire day.
I remember having little children, holding and carrying them around, cleaning like a freak while they would nap or watch a TV show, I remember exercising every morning before the babies would get up. I remember being tired, but it was nothing like this Pathologic Lethargy I now have. I remember being frustrated, happy, tired, hungry, thoughtful, and so busy. I remember I would nap in the afternoon when the kids had nap or quiet time. That was a sacred 2 hours. I remember passing out when they were down for the night at 8. I remember diaper change after diaper change, car seat struggles, tying shoes, dressing fussing children and babies, putting on sunscreen and floaties before pool time, birthday parties, preschool, kinder, preschool, and crafts. I remember my weight fluctuating like between 123 and 170 with pregnancies and weight watchers. I remember breastfeeding a LOT. I remember drinking a glass of wine while cooking in the evening. I remember stroller walks, pushing 1-3 children. I remember teaching my children to ride a bike, climb a tree, swing on a swing, write their name, read, name a shape, make the correct animal sound. I remember singing them song after song… Bah Bah Black Sheep. And when I would stop singing, they would cry. I remember cleaning lots of bodily fluids and caring for many sick kids.
I know it all happened. I see pictures in albums and I believe I can remember their warm little soft bodies next to mine as I fed them, the smell of their little heads of soft hair.
I remember I was me. I looked the same, I laughed the same, I cried the same. I have the same eyes and smile, brush the same teeth every day. I still love shoes, makeup, a sweet pair of earrings or a funky ring, a twisted joke, friendships, children, a glass of wine or 3, and music and movies – I love them! My sweet husband has been at my side the whole time and we’ve watched our children grow from tiny babies to young adults.
I remember living on campus in Allentown, in our apartment in Whitehall, our big beautiful wedding and honeymoon in Maui. I remember our darling cape cod in Worcester and then our townhome in the same town. I remember our remarkable trek across the country in the green Ford explorer. Our first home in Tucson. Our devastating miscarriage. The following 10 years in our Labyrinth Dr home where all our babies were born at the Tucson birth center. And then…finally, I remember accepting I was very ill with depression, then later, very ill with anxiety disorder. I remember our move into our Echo Valley home in 2007. The home I’d dreamed of since my first baby was wee.
I remember it being a very difficult move, even tho it was only a mile away. We thought we could do it on our own and we had SO much stuff accumulated over a decade and our hands were so full with a 4, 5, 7, and 9 year old. I was working part-time, Marc was working full-time. It was then I noticed my butalbitol prescription (my migraine med since my early 20’s) was no longer lasting 6-12 months. It was only lasting 1-2 months. And I was taking ibuprofen for head pain every day. I was also starting triptans. The new exciting migraine med that I had never needed.
It was a slow realization…certainly not overnight. But the head pain, the migraines, the sciatica flares… suddenly my body was dealing with a barrage of frequent pain. I ignored it at first. Certainly, it was just a fluke. Even though in the back of mind, I knew needing so much ibuprofen – just to make it thru the day – was alarming.
This was my jump to Chronic. I know that now. I didn’t understand it then. I go over and over this time period in my head, wondering what I did wrong, searching for the cause. And I come up short. I remember my doctor having me come in… she’d noticed the change in the prescription. Together, we worked on a solution to right me: different meds, different approach. We did an MRI, consulted a neurologist, tried lots of medications.
But nothing seemed to work. Or, if it did, it didn’t work that long. I kept throwing pills back and smiling. Just get thru it! Suddenly I could no longer exercise every morning – the pain was too frequent and too much. I couldn’t understand what was happening but was pretty sure it was just a phase. I guess. The first neuro said she couldn’t help me anymore. It was just my primary doc and me. And that was ok. Until August 2008, when a six day migraine landed me in the ER. Our friends watched all our kids for the 5-6 hour treatment. I was devastated having to ask so much of anyone. They were our children, our responsibility, and asking someone else to watch them was something Marc and I did exactly never. The ER doc recommended I find another neurologist.
It was sheer luck that soon after, I connected with a friend of a friend, Andrea, at the time. She was in constant migraine pain and her husband, a doctor, was getting her all the best treatment – even Mayo Clinic. I called to get in with her neuro (who she left soon after, feeling like her care wasn’t good enough). That was Wendi Kulin MD and my experience with her was different from Andrea’s. Wendi tried a few other meds with me but then got me into the Botox regimen (finally approved in 2010/11). While Dr Kulin was tough to get on the phone, she was a pleasure in person during our monthly or every other monthly visits. There were times when I admitted to her that I was losing hope that these migraines would ever end. And she’d look me in the eyes and say, “Don’t give up hope. We will work together. I’m here for you.” And I’d cry in front of her, moved by her assurance. What I didn’t understand at the time…and wouldn’t until 2013…was that, once getting that diagnosis of Chronic Migraine in 2007, it meant migraines wouldn’t “go away,” the best that would happen was they would be reduced or “managed.”
In 2010/11, I began to suspect that there was some autoimmune thing happening with me. It was like my body was crashing. While my migraineur friend Andrea (the absolutely ONLY other Chronic I knew) would go on to a hysterectomy to control her migraines, claim it “worked” but then later went gluten-free and claimed it “worked,” she still seemed to be struggling. I suspect she is still chronic, only secretly suffering. When I check with her, I get vague answers. “I’ve never felt better than I do now that I’m gluten-free!” does not say she’s no longer suffering from frequent migraines.
I was dealing with exhaustion as I worked part-time, I had a goiter and hypothyroiditis flare in late 2010, I fell ill with a devastating and dramatic case of shingles in 2011, I was becoming hypersensitive with my reactions to stimuli – usually so calm and cool, if someone shouted my name, I now found myself jumping a foot in the air, my sciatica flares continued to grow more frequent and intense. And all the time I was questioning myself on what I’d done to cause this failing health. The depression and anxiety were intense. All in all, I was fucking miserable. I was contemplating suicide all the time becuz I felt my kids and husband would be better without me burdening their lives. In all things, I was failing. I was not good enough; I sucked.
Dealing with friends and anything outside my home was difficult: I hid my illness. Becuz anytime I opened up and mentioned it, I was met with disbelief, my cries were glossed over, and I was quite sure and convinced I was a complete freak. Better to hide it. Cutting helped. Therapy helped. Discovering, researching and working thru childhood mental trauma helped. Friends…friends didn’t help much. I was completely alone. And I hurt so much.
In 2013, we left Tucson for a job relo in Austin.
It was a good move. I found a great neuro Sara Westgate and never skipped a beat in my botox regimen. The move was stressful and made my health flare…I was diagnosed with Rheumatoid Arthritis and later Sacroiliac Joint Dysfunction. Although my neuro provides excellent preventative chronic migraine care, I’ve had to add a rheumatologist and pain specialist to my care…just to “manage” my chronic pain. I also have added a psychiatrist NP and therapist, pulmonologist and others to the my healthcare team. I thought when we moved in 2013 I would take a year off from nursing to focus on my health. But it became pretty clear that returning to nursing may be a pipe dream as my health deteriorates, instead of improving.
A game changer happened in the fall of 2014 when a college friend Heather took note of my frequent Facebook migraine posts and proactively added me to a Facebook chronic migraine support group. To my shock, I was suddenly around hundreds of real people who were suffering EXACTLY like me. For weeks and weeks I kept asking aloud, “Where were all you people all this time? You really have head pain everyday too??” Suddenly, I was no longer alone. And if I was a freak, I was among a mess of other freaks – just like me!! This is where I met Selena, among other caring, supportive migraineurs.
So. Here I am. Everyday. And I think back to before 2007. I think back to 1994, 1997, 1998, 1999, Y2K, 9/11, 2001, 2003, 2004, 2005 and 2006…
I remember that life. But I just for the life of me, cannot remember how it felt anymore.
I cannot remember what it felt like not to have constant pain, exhaustion, problems concentrating and thinking, constant guilt, depression, anxiety, dizziness, malaise.
I’ve changed. I’m still me but I’ve changed.