Almost Like Old Times

I had leftover pizza for lunch today. Leftover pizza can be a nice thing. And when it’s leftover from a spontaneous late evening dinner on my patio with one of my oldest and dearest friends, it’s even better.

Yesterday my friend M, who I’ve known forever, sent me a text message at the end of his work day to see what I was up to for the evening. As I wrote then, my mood was quite low on top of my pain level being quite high, but instead of telling him that I asked what he had in mind. He asked if I was up for a visit or if I wanted to go out to get a bite to eat. I didn’t want to do either, but I wrote back asking what his preference was and reminded him that we could get some food and eat on my patio. He thought that was a perfect idea and called me so we could decide what to eat. We quickly decided on a pizza with hot wings on the side, which I ordered while he drove to my place.

Within an hour, we were sitting in the dim evening light on my patio eating pizza and laughing almost like old times. Except that in the past, after receiving his text message or call, I would have thrown on some clothes, he’d come by to pick me up, and then we would drive until we decided what was good to eat in whichever direction the car was heading. I miss those days a lot. Life’s spontaneity is no longer something to which I can surrender. Every moment of my life that requires a large output of energy requires planning. I have to map how long it takes to get ready, whether someone will pick me up or I’ll schedule a ride (a taxi or Über), how long I’ll be able to stand if seats aren’t available, whether available seats are comfortable enough to sit in for the duration of the event, and how long I may need for recovery when it’s all over.

Nonetheless, my friends do their best to understand. Even though they know I might have to cancel at the last-minute, they try to do all they can to make my life feel normal. The latest accommodation they are willing to make is bringing the fun to my home, which thankfully is what happened last night. As blue as I felt yesterday about living through another summer trapped indoors by pain; my friend M lifted much of that mood. Him touching base with me at the end of the day to see what I was up to doing, as he often did in the past, brought me back to feeling what things used to be like for a few short hours, before my pain forced its way back to center stage.

 

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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

 

Spring Cleaning Pain

I’m late posting my entry for last week’s ‘IF Draw A Week‘ challenge that I found on Instagram. It’s not because I didn’t complete it. For whatever reason I had more technology hiccups yesterday, so I diverted my attention to do attempt some Spring Cleaning. I’m cleaning because I feel mentally cluttered as a result of my home becoming cluttered. Actually, it’s been cluttered – and my version of shamefully messy – for a while now because I can’t clean the way I used to and the person I had coming to clean my home for me hasn’t been able to be here for several months. Happily, she found a full-time job that pays enough so she doesn’t have to clean other people’s homes anymore to make ends meet.

Sadly, what that means for me is that I’m sinking under the weight of undone chores. It also means that after making any significant effort, as I did yesterday, I pay for it with added pain. When I finally fell asleep last night – it was actually early this morning – I knew that I’d be in for a painful day, and my body has not disappointed as it continues to narrow the parameters of my life. In this instance, it’s a clean house vs. manageable pain, but the cleaning is not finished yet, so I have to prepare myself for the painful days ahead until it’s all done.

However, if I can’t address the clutter in my home in one go, at least I can briefly put aside the clutter in my mind. The prompt for last week’s ‘IF Draw A Week’ challenge was to “sketch something from real life”, and because it’s not possible to draw pain and I don’t want to depict the growing stack of paper on my dining table, I decided to draw some of my art supplies. The objects I drew are a black binder clip, my trusty Staedtler pencil sharpener, and one of my newly discovered – and quickly becoming favourites – Muji gel pens.

My effort to spring clean my home may not have been successful, but I hope that I successfully captured what these items look like in real life on paper.

 

Creative Pain Distractions

It’s hard being alone with intense pain late at night, as I was last night and the night before. Then again, pain that never stops is hard to cope with at any time of the day. Last night, and other days and nights, when my pain is particularly bad and sleep eludes me, I try to think of things to do – aside from amputating the offending body part(s) – to distract myself. Unfortunately, depending on the pain’s level of intensity, I’m not always successful at turning my thoughts away. However, I do usually end up creating something interesting to look at.

As the pain level rose in my legs and pelvis the night before last, I didn’t have a plan for what I wanted to create. I started to place random dots on a clean page in my sketchbook with a black Sharpie pen. Then I connected the dots together with short straight lines and they became triangles, but the sight of a page full of small triangles didn’t feel satisfying. That led me to connecting the triangles at their various points creating a sort of web, which still felt incomplete. I looked at the page for a short while then started drawing lines within each triangle transforming them into prisms. With each line I added, I saw multi-pointed stars appearing on the page that made me wish for an opportunity to experience weightlessness among them on the off-chance I might not feel any pain without the pull of gravity…

Drawing lines didn’t help make my pain go away on recent nights, but it distracted me from thinking of it for a short time as I imagined creating a new galaxy of endless stars.

 

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

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.

 

Thoughts Often Become Reality

I try to be careful about the things I think. Mostly because I do believe in self-fulfilling prophecies, which an article in Psychology Today explains simply as “a belief that comes true because we are acting as if it is already true.” According to the article, “Our expectation that we will see a particular outcome changes our behavior, which shapes the way others see us. In turn, others provide the feedback we’ve set ourselves up to get, which serves to reinforce the original belief.” The idea that the way a person sees himself or herself affects his or her behaviour and how others perceive them and in turn respond to them is something I’ve witnessed my entire life. It’s also something I’ve experienced, which has influenced the way I conduct myself when interacting with others and the image of myself I project for people around me to see.

How the Self-Fulfilling Prophecy Works - Courtesy Psychology Today

How the Self-Fulfilling Prophecy Works – Psychology Today

The unfortunate thing with believing in self-fulfilling prophecies when you’re chronically ill is that it causes – at least for me – a great degree of added stress and anxiety. Even though I’m extremely ill, I find myself, quite often, trying to act better than I feel even though the chances of that making me feel better are slim. I always make the effort to be well-groomed and dressed when I go out – to make sure people can’t see how ill I really am –, even to doctors’ appointments where I’ve had at least one doctor comment on how well I always put myself together. I know that acting as if you’re not ill when you are may sound silly, but psychologically and emotionally it helps to keep me from falling too deeply into depression. It also helps me not feel pity for myself and rarely gives other people an opportunity to engage with pity for me or to treat me gingerly. However, acting healthy or completely well, when you’re not does take a toll on you; and I think, after just a few days into the visit with my cousins, I’m starting to feel it.

Yesterday, I posted about my cousins who arrived on Sunday for a two-week visit. They’ve only been here for two full days, but my body is already feeling the effects of acting as their host. On Sunday when we got home from the airport, we rested for a few hours, and then I made us a light meal for dinner. Not much for someone who is well but a lot for me. Yesterday, we spent most of the day at home because of the extreme hot weather we’re experiencing at the moment and to give them some downtime to adjust to the time difference and recover from jet lag. Then later in the afternoon, we went out to run an errand that didn’t take very long but involved taking a taxi, briefly walking through the local shopping mall, and a short walk home to give my cousins a chance to see the neighbour and get familiarized with it so they can go out without me when they choose. When we returned home, I cooked dinner for us, not giving any thought to the less-than typical day of activity I’d already had.

Well, here we are today. Not out on the day-trip I had planned for us because my legs, pelvis, hips, and back feel like they are on fire. This was part of the reason I had so much anxiety about them coming to visit. I know this isn’t a self-fulfilling prophecy, but it might be whatever the flip side of one would be. By not acting as if I’m ill and not taking my limits into consideration as I move about every day while my cousins are visiting I will cause myself more pain. Therefore, I have to be willing to admit, to myself most of all that I am ill and can’t do as much as they can do every day. I have to remind myself that there is nothing wrong with taking pity on myself for the purpose of self-care, or having others step in to do the things I can’t because all that means is that I’m taking more care of myself. But most importantly, I have to fully accept that I am ill so that when the extra pain kicks in, as it has today, I don’t get angry with myself or feel betrayed by my body.

One of my close friends who knows me well, especially how hard I find asking for help even when I need it, has taken my cousins out for the afternoon to give me some time to rest. I’m very grateful for his help and unspoken understanding. Being on my own for these few hours, I’m realizing that the longer I’m ill and the more I resist acting as if I am, the harsher the reminders I’ll receive from my body. As often as I’ve said in the past that I accept what is happening to me, it seems that I’m still quite a distance away from that being the reality.

 

Muse – Resistance