Migraine Memories

As we transition into spring, I’m hit with an almost joyful thought: I haven’t had a migraine caused by barometric pressure in so long I can’t remember the last one. For a long time, my body had difficulty adjusting to the change between seasons. I dreaded the rainy, darkly cloudy, wet days that were characteristic of spring and autumn weather. I would wake in the mornings without having to open my eyes to know it was overcast outside because I would have piercing pain on one side of my head, usually accompanied by what felt like someone using a very pointy sharp tool to dig through either of my eyes. On days like that, I couldn’t go to work, before that university, before that high school, or participate in any other planned activity. My body required that I stay in bed as motionless as possible with a hand pressed to the side of my head and my face buried in a pillow to prevent any light from getting into my throbbing eye(s).

I would pray for sleep because taking any pain medication at that stage would be pointless. I couldn’t eat until the migraine passed because the smell or even the thought of food made my stomach heave with nausea. I couldn’t have anyone touch me either. The slightest touch from another person would make the already hypersensitive nerve endings all over my body make me want to peel my skin from my body. Looking at light was probably the cruelest thing I could do to myself. Allowing the dimmest level of light to make contact with my pupils felt like a blade of steel was slicing through, not just my eyes, my entire head. All these symptoms made communicating with anyone to describe what I was feeling extremely difficult. Whether it was a blessing or a curse, I’m still not sure, but all the women in the paternal line of my family suffered from migraines, so there was an unspoken acknowledgement when each of us was hit with an episode of this debilitating illness, which made the need for complete silence easier to meet.

I was also fortunate, during the early part of my work career, to have a manager who suffered from migraines too. There were days when he looked at me as we passed each other in the office hallways that he could immediately recognize that I was in pain. He would tell me to finish whatever I was doing, if I could, then go home to get rest. If I didn’t make it to work for the next day, or two, he was empathetic enough not to have calls made to my home because he knew what a ringing telephone could do to a person with a migraine. Without that support, I don’t believe I could have thrived and achieved the successes I did so early in my career in a corporate setting. Unfortunately, in later years I experienced less accommodating workplaces; and from conversations over the years with other migraineurs and from reading so many people’s stories about coping with migraines while working, I know how stressful being in an environment where people think a migraine is just a strong headache can be.

I’d like to believe that taking multiple ‘mindfulness-based meditation for stress and pain reduction’ courses is what got rid of my migraines. However, I still had some for years after taking those classes, although not with the same level of intensity, and I was able to cope with the symptoms better too, which felt like a miracle. Nowadays, I keep my fingers crossed that migraines won’t become a regular part of my life again. Living with the chronic pain condition I have would be impossible if I also had to cope with the crippling effects of migraines, especially when I can remember having some that lasted for days on end. Luckily, on this gloomy overcast day, I can look at the bright glare from the screen of my laptop and write about my experiences, instead of hiding in bed under the covers.

 

Blinded by the Light ~ Manfred Mann’s Earth Band

 

Pain Clinic #10: The Hope of Bluebells

I had to be up and out of the house early in the morning for an appointment at the hospital yesterday. I had to check in to the Day Surgery Department at the hospital where I am seen by my Pain Specialists by 7:45 AM so they could prep me for yet another pain treatment. I haven’t been writing about my Pain Clinic visits much in past months because they are so frequent and usually consist of just a check in to see how I’m coping and what might be the next course of action. I’ve also been doing research about the procedures and medications they propose so I can better advocate for myself and not allow anxiety, due to lack of knowledge or understanding of what is being done to my body, to potentially create a mental block or resistance so my body can fully benefit from what I’m undergoing.

Yesterday’s pain treatment was particularly tough to handle mentally. However, on my way home from the hospital afterwards, I saw bluebells in a flowerbox outside a restaurant. I took some photos of them because, to me, they have always symbolized the beginning of Spring and the resurgence of life after the deepest cold of winter. It made me so happy when I saw them. I’m hoping they are a sign that what I went through yesterday in the treatment clinic, is the start of something better in my life…

 

 

Prepared to Pluck Polyps

After some juggling of schedules, I’m finally having surgery today because last Spring the results from my follow-up abdominal ultrasound scan showed that I have a uterine/endometrial polyp. My Gynecologist decided it was best to remove it, and not leave it alone and subject me to abdominal scans every six months to monitor it for changes. If I had demanded he leave it alone – say because I feared extreme post-surgery pain – any changes that showed up in later scans could have signalled cancer. Even the slimmest chance of that happening was enough for me to accept my Gynecologist’s decision.

To be honest, I expected to have the surgery in the fall, but I had to place a priority on the treatments and programs I already had scheduled for my chronic pain during those months. My continued pain was also a big part of the focus for my surgery pre-admission appointment last week. I spent about four hours in the hospital’s Pre-Admission Center on Friday, meeting with nurses, technicians, and doctors to discuss my medical history and identify any current health issues, have blood drawn for tests, and get a general physical. The nurse was the first person I met with and at one point, while looking through my electronic medical files; she rightly stated that I spend too much time in hospitals.

During my meeting with the nurse, I had to recount the history of my illness, the outcome of my last surgery and recent treatments, and the long list of medications I now take to cope with my pain. As pleasant as she was, while I sat there and went through all those details, the interaction put a sharper edge on the pain I was feeling. At one point, she noticed my creased forehead and asked if I was all right. There wasn’t much I could say in response, except that it was just my usual pain, which thankfully she couldn’t tell was a lie. Before I moved on to the next stop in the pre-admission process, she gave me some literature on my surgery, a Hysteroscopy, and although I’ll be under general anesthesia, will not require any abdominal incision(s) because it will take place entirely within my uterus. Oh, joy!

Next, I met with the blood technician who took three or four vials of blood. I’m rarely sure about how many vials get filled for blood tests because having my veins pierced by the needle always hurts like hell and I never look. I am concerned about what the results from the blood tests might be because recent tests have uncovered that I have low iron – which means I’m anemic – and I have low blood (hemoglobin) levels. If I have below normal blood levels again, my surgery might be rescheduled until I get a boost. Thankfully, when I later met with the doctor for my physical, the session was short and didn’t cause me any extra pain.

My last stop, in the pre-admission process was with and Anesthesiologist, who is a member of the hospital’s Pain Team. I had to meet with someone from the Pain Team to discuss the possible outcomes of the surgery with respect to my pain. The type of surgery I’m having is usually a Day/Ambulatory Surgery procedure, meaning that you get to go home once you wake up and don’t show any adverse reactions to the anesthetics. In my case, the chronic pain I live with daily is factored into when I might be allowed to go home. If, when I wake up, I don’t have unmanageable pain I can go home on the same day. However, if my pain can’t be controlled I’ll be kept, at least overnight, until my pain reaches a level I can cope with at home. I’m hoping for the former because I want to come home and sleep in my bed after it’s all over, but knowing what I do now about my pain’s unpredictability I have to prepare for anything.

This is what I was listening to as I posted this morning…

The Beatles – Hey Jude

After InkTober Is Over

Now that InkTober is over, I feel a bit out of sorts. I don’t have a daily prompt to look forward to, like I did for the entire month of October, nudging me down a particular path, whether with my thoughts or the topic to draw. I liked having that daily structure. Modifying the challenge for myself to focus on my mindfulness practice – as I set out to do on Day 1  – increased my enjoyment, even though some days it was harder to get into the flow of writing without my thoughts constantly wandering off topic. I suppose it did help me to practice mindfulness because I needed to bring my thoughts back to what I had chosen to write about and stay with it to finish a coherent piece.

I also realized during the InkTober challenge that I’m not sure what my preferred drawing style or techniques are and that showed in what I produced. Although I managed to surprise myself on some days with my drawings, I had to stretch my artistic abilities. After some thought, what I’ve decided to do now to maintain a daily creative practice, instead of doodling or drawing or writing poetry when the mood hits me, is select one of the many creative books I’ve been stockpiling and work through it as if taking a course. I may not post my progress every day because I learned how tiring it could be, mentally and physically, to push myself to complete a daily challenge. However, even if I don’t post about it I will be occupying myself with something to improve my creative skills and to ward off boredom.

I also need to get back to where I left off writing about all my medical treatments and misadventures. I obviously haven’t written about that part of my world for a while, but there are still things happening that I hope might be helpful to others living with issues like mine. I’ve had a new medication added to my pain management cocktail and I have two important additions to my treatment plan coming up, which I’m counting on to deliver some changes to my health, but if they don’t maybe someone reading about them will benefit from them. The first addition is a six-week mindfulness and yoga-based chronic pain management course called iRest. The course starts next week and my therapist referred me to it. The second is a more invasive procedure that will happen under my pain specialist’s supervision at the hospital in the day/ambulatory surgery clinic.

I no longer have daily prompts, but I will have lots to keep me busy. With all the upcoming activity, I have to remind myself of the most important take-away I learned from InkTober: that even though some of it might be fun, I don’t have to finish everything at once.

Bright Cone Flower Sketch - October 2016

 

Am I Losing My Resilience?

I used to be tough. I had to be. I grew up in a family where being needy was a sign of weakness, and feelings and emotions were things you kept to yourself. My parents separated when I was quite young, which meant I had to learn to depend on myself because neither of them was ever reliably available for me. Repeated disappoints from my parents made me resilient because I had to recover and bounce back from so many situations that need not be a part of a person’s childhood. That learned resilience helped me cope with every obstacle life put in my path and all the crappy things people believe it’s okay to do to each other.

The thing is, the longer I’m sick the less resilient I feel I’m becoming. The unshakeable pain I feel every minute of every day is starting to chip away at my psychological and emotional strength and my ability to bounce back, relatively quickly, from difficult issues that crop up, regardless of the size. That concerns me because I think to survive this illness for an unpredictable amount of time I need the spark of combined toughness and grit I’ve always carried within me. That spark has lit my way and guided me through countless hard and painful situations in my life; and I feel like it might start to fade under the unyielding pressure from my pain. To be truthful, I’m more than concerned, I’m a bit afraid. What if, I can’t hold on to the intangible thing that has kept me grounded and moving forward in life until now; until now, when I need it more than ever.

The strange thing is, the more I question myself about this, the more my mind turns to a TED Talk about grit and resilience – primarily in children – I watched a few years ago. I felt immediately connected, to the theories the speaker, Psychologist, Angela Lee Duckworth raised as she spoke. I understood her ideas about how or, more accurately, what is necessary, beyond intelligence and socioeconomic background for a person to succeed. However, that was three years ago, when I was healthy. Now, I can see that there is so much we don’t see or are unable to measure with tests or studies to chart ‘success’ because my perspective of success is no longer measured in the same ways. Now, my success is rooted in what I can do from day to day, within the limits set by my pain; and I can feel my pain chipping away at my toughness and working to dim my spark every day.

As I thought more about this TED Talk, I wondered if anyone had done any studies on resilience and chronic pain. I found some published psychological studies that I’ll be reading in more detail later. The gist of them all is that resilience does matter and chronic pain patients with greater levels of resilience have a higher survival rate. Now that I know this, the question for me is, how do I keep myself from losing my resilience? I truly hope I’m able to find something in one of these studies that helps me to keep my spark lit.

 

 

Can Pain Kill You?

Can pain kill you? According to the responses from my Google search, yes, it can.

Can Pain Kill You

Some days, like today, I feel like my pain might kill me. I know that might sound over-the-top, but if you’ve never experienced debilitating pain, there’s no other way for me to describe it. When I used to get frequent blinding migraines or my monthly menstrual cramps made it impossible for me to get out of bed, I always took comfort in knowing that those pains would eventually end. Now, with this pain, there is never any relief. There is no day on the calendar or time frame after taking medication that I can look forward to because they mean there will be an end to the pain threatening to split my skull open or implode my reproductive organs. The pain radiating from deep in the right side of my pelvis, out towards both hips, down both legs, and up my back has no schedule or half-life to which I can look forward in anticipation of relief.

Some days, like today, the pain is so unbearable; walking, standing, or even sitting still, hurt so badly I don’t know what to do with myself. I don’t know what to do with this anxious energy racing through me that probably adds to the frenetic activity within my nervous system and amps up the pain. I don’t know how to make myself comfortable when I sit because no surface can ever be soft enough against my aching tender skin. While just the thought of trying to rub and massage the hurting parts of myself makes me cringe and nauseated to the point of wanting to vomit.

If the pain, like the type of pain I feel, can kill a person by pushing them to suicide, I can understand why. I’m not, by any means, contemplating ending my life, but I’m uncertain about how long – it’s been three years already – I can live like this not knowing when or if I will get any pain relief. How long can I continue to accept being characterized as a “mystery patient” by my doctors who can’t pinpoint why my body is still reacting, to a growth that is no longer in my pelvis, before it becomes too much to bear? A psychological episode most likely will not be what brings my life to its end. It could very well be the stress of constant pain on my body that makes my blood pressure boil over, causing a stroke, or my blood could become poisoned by the copious amount of opioid pain medications I take, leading my organs to start to fail. Que sera sera…

I know none of this is helpful or optimistic, but this is where my pain sends my mind on days like today when I hurt so badly I don’t know what to do with myself.

 

Futile Emergency Room Resistance

For the first time since having surgery last August, I landed in the hospital emergency room on Sunday. I was struggling with a pain flare up all day and finally had to surrender to the fact that my pain medications were not doing all they could for me in the pain management department. After trying to be still, crying, talking myself into a space of calm, and trying desperately – but failing miserably – to sleep through the pain, I gave in. When you’re barely moving and still have intense pain in your feet, ankles, thighs, hips, pelvis; and lower back pain that feels like it has tentacles spreading up your back, it’s hard to keep assuring yourself for hours on end that the increasing waves of pain will pass. On Sunday, there was no ebb to the painful tension enveloping my body, so the dreaded emergency room became my last resort.

Before making the decision to go I contacted some of my friends who usually make themselves available to keep me company while I sit through the hours of IV medications slowly dripping into my veins. Unfortunately, on Sunday afternoon, as one would expect, most of them were locked into plans. The ER is uncomfortable enough, but having to face going in on my own always makes it worse. It’s also partly why I held off from going in for so long. Later in the afternoon when I could bear it no longer, I accepted the offer of a neighbour who had come by to drop off some items from the farmers’ market to go with me and keep me company until someone closer to me could come be with me. I’m certain I would have waited hours longer before going if he hadn’t stopped by.

Emergency rooms, especially on a weekend, tend to be populated with interesting characters. When we arrived at my local ER on Sunday, there were people from all walks of life waiting for triage to the right level of care. One woman suffering from obvious mental health issues was shouting incoherently at the top of her lungs what must have been a badly patched together montage of events from what sounded like a tragic life. As she became more animated and the flow of expletives in her ranting increased, the hospital security guards and police were called to subdue her. When I finally made it into the ER treatment area I could still hear her shouting from a distant corner, and I overheard the nursing staff assuring security they could leave because she was securely restrained. It hurt my heart to picture that woman strapped to a hospital bed against her will.

Thankfully, I didn’t need that kind of intervention. However, once the nurse recorded my vitals I knew that my body was in crisis. My blood pressure was 162/82. That’s not the highest it has ever been but it was high enough to confirm for the nurse completing my intake, that my pain was real and I wasn’t in the ER seeking drugs when I said my pain was an 11 or 12 on the pain scale. After a 90-minute wait, I was finally seen by a doctor who had me list the cocktail of pain medications I take daily so she could understand what I was coping with and what she might be able to do to help me. I could tell from how little she said that she was trying to wrap her head around someone with a body as small as mine taking such high doses of pain medications yet still feeling so much pain. I tried to get her mind moving by telling her what treatment(s) I had received in the ER for past pain flair ups, and that seemed to jumpstart things.

My friend J arrived a short while before my discussion with the doctor started. It was good to have her there because she has been through this scenario with me many times before and is sometimes faster at responding to questions about my condition than I am when I’m in that state. J’s arrival also gave my very kind neighbour a chance to slip away and head home. He had sat with me for a few hours then hung around chatting with J and me, for longer than he needed to, to make sure I got some treatment before he went home. His presence reminded me how blessed I am to have so many people in my life who care about me, even when they have no vested interest to do so.

After consulting with the ER Attending Physician on shift, the doctor returned and told me they were going to start by giving me a shot of my old faithful injectable Toradol, and that I should take the scheduled dose of my pain medications, which at this point were about 90 minutes overdue. Unfortunately, I wasn’t paying close enough attention when she said I would receive an intramuscular shot of Toradol instead of an IV drip. For anyone who’s never had a needle plunged into a muscle, unless you have masochistic tendencies, give it a pass. The pain in my arm after that shot rivaled what I was already feeling in the rest of my body. The nurse instructed me to rotate my arm to get the medication flowing through me. I flapped my arm around like a bird with a broken wing for about ten minutes. For all the good that it did because my pain was unaffected.

When the doctor returned to check on my progress, my blood pressure reading had dropped to 160/82. For the first time, the Toradol wasn’t working. She went off to get more advice. What she tried next was an IV with an added milligram of Dilaudid, which is part of my regular pain medication regimen, and Lidocaine. Lidocaine is a local anesthetic that prevents pain by blocking the signals to nerve endings in your skin. It’s usually used to numb skin before painful procedures: think about the shot to your gums before your dentist starts drilling. Within 30 minutes, after the drip was opened, I started to feel some relief, and the sure sign that things were moving in the right direction was my blood pressure began to fall.

With this positive result unfolding the Attending Physician came by my bed to talk to me. He was empathetic with my situation and concerned that I am living with this extreme pain. He wanted to know what treatment(s) aside from pain medications I have received and added a few suggestions for future treatment(s) to my list. He also made it clear that if the effects of the medications I received wore off I shouldn’t hesitate to return to the ER; and that if I did I should tell whoever treated me to try the Lidocaine, as unusual as it may sound. He even asked if I wanted to have an extra top-up of Dilaudid to make sure the positive effects I felt didn’t wear off too soon. However, because I still had a dose of Dilaudid left in my pillbox for the night, I opted instead for another dose of the Toradol.

Once the IV drip stopped and I got dressed, I became acutely aware of how hungry I was. The night’s ER adventure ended at 2:00 AM with J taking me to a nearby 24-hour diner to get a huge Chicken Parmesan sandwich with French fries, and a slice of cream cheese icing-covered carrot cake to go. More importantly, although I had resisted going, my visit to the ER gifted me with the knowledge of an alternative cocktail of medications to bring my pain back to a level where I can cope if I need extra support again in the future.

 

Chumbawamba – Tubthumping