One Week In My Life With Chronic Pain
I've had chronic pain since October of 2010. I got appendicitis after a month-long virus, and basically, I've been in pain ever since.
My chronic pain has evolved and shifted over the years, but essentially, it's a sensitisation of my central nervous system, which is nerve pain, that has also looped in my muscles, which are all jacked up from the years of nerve pain.
There's also some hormonal issues, some IBS, and some fibroids at play, as well as some depression and anxiety issues. They all interact with one another, so a flare up with one will generally pull the others in as well, so if I'm stressed and anxious, my pain will flare, and vice versa.
If you don't have chronic pain, you may find it hard to understand what it's like to have to deal with the experience of being in pain every day for eight years. That's understandable. To be honest, I don't think I would get it if it wasn't my reality.
The thing that I find hardest to explain to people is how much my pain influences and impacts my day-to-day life, even when I'm not having a bad week, or a pain flare. At the moment, my pain is pretty under control. After a rough year last year where there were many times I didn't think I'd be able to make any progress, and the path I was on was one that where my pain would worsen and worsen and worsen until I couldn't cope with it anymore, I finally found a combination of treatments and medications that have drastically improved the quality of my life.
I still have flare-ups, and I still have daily pain, but on the whole, things are pretty good at the moment, and I feel very grateful to be here.
In order to try to explain all the ways my pain impacts my life -- even when things are good -- I kept a diary of every decision and action that was influenced by my pain for one average week.
I woke up Exhausted with a capital E. Last Thursday, I went home to Adelaide and spent the four-day weekend catching up with friends. In hindsight, I crammed too many people into my plans, I shouldn’t have eaten carbs -- because I know they make me bloated and sluggish -- I should have paced myself better, I shouldn’t have drank as much. I had a blast, but it came at a price that I'll pay this week.
My flight got in late and I didn’t get eight hours of sleep, which is imperative to my ability to function with pain. When I'm rested, I'm able to focus, able to ignore my pain, for the most part. When I'm tired, that ability goes out the window, and the more I focus on the pain, the worse it gets. Pain is very much linked to your emotions, and if you're distressed, those pain signals will flare up in no time.
The brain fog hit about 2pm, exhausting me to the bone. Looking at my schedule for the week, I quickly realised I'd overcommitted myself. With something on every night, directly following four intense days of socialising, I saw that a pain flare was inevitable, especially because I was already so worn down. With that in mind, I rescheduled my acupuncture appointment to Wednesday, head straight home, order dinner and crawl into bed just after 8pm. To ensure a good night's sleep, and to preemptively fight the pain flare, I take a Valium and a Panadeine Forte. The combination will fight muscle spasms and pain together, and hopefully, I'll wake up feeling rested tomorrow.
I woke up feeling better after a decent night's sleep. I have breakfast and take my daily medications -- 90mg of Cymbalta for depression, anxiety and nerve pain, 50mg of Spiractin (the first of two doses) to stop my hair falling out, a side effect of stress and hormonal imbalances that come from being in pain all the time, an immunity-boosting vitamin and a hair, skin and nails vitamin.
After eagerly reminding my friends on the way to work that we had planned to go to trivia this evening, I end up having to cancel.
As my neck pain flared and twinged in the afternoon, I looked at my calendar again, thinking about how much work I had to get done this week, and about my 6am Wednesday shift.
I considered that going to trivia means getting home about 9:30pm, and not being in bed until after 10pm. With a 4am wake-up call and a very busy day, I was suddenly overwhelmed. My anxiety flaring, I realised quickly that my pain was going to flare like crazy if I didn't prioritise and tried to push through it all.
I'm really lucky, in that my friends are all very understanding, and are probably used to me having to do this from time to time, but I felt guilty for cancelling when I was the one who'd made a big deal about it that very morning.
Looking at my rescheduled acupuncture appointment -- for 4:30pm tomorrow -- I consider what time I'd get home after that, and whether that would be enough time to get enough sleep before another 6am start on Thursday. I called and rescheduled again, for 3:30pm Thursday. I finish at 2pm, so it should be perfect.
After getting home about 6pm, I popped a sleeping pill in order to be asleep by 8pm, ensuring my eight hours of sleep for the night so that I can do my job tomorrow.
After a long day at work, with lots to get done, I was feeling the pressure, literally. My neck pain flared in the afternoon, meaning that when I got home and changed into my pyjamas -- which I do immediately after getting home -- it felt like I was tearing the muscle around my collarbone and up the left side of my neck as I pulled my shirt over my head. With this in mind, I resolved to wear a button-down shirt tomorrow, as I regretted rescheduling my acupuncture appointment for then.
Because my anxiety’s been bad this week, I plan to get up early in the morning (3am, ahead of my 6am start) in order to do the things that help me remain focused, calm and balanced.
‘I need to meditate, I need to do my morning pages’, I think.
I took my evening medication, tossing in a sleeping pill and a Pandadeine Forte for good measure. Although I don't love taking so many pills through the week, I have to game the system in order to make sure I can get the sleep my body so desperately needs to function, particularly during a busy, stressful week.
I woke up tired, perhaps from the double-edged sword that is pill-popping to game the system and get enough sleep. I skipped meditation and my morning pages in favour of snoozing, which I pay for through the day as my anxiety continues to flare.
It’s being exacerbated by my PMDD (pre-menstrual dysmorphic disorder), I realised, after tearing up no less than 10 times during a screening of a documentary about fangirls.
Finally, I had my weekly acupuncture appointment today. It's $80 a week, but it's one of the few things that actually helps my condition, so it's well worth the dent in my bank balance. I've been going weekly, sometimes twice weekly, since the beginning of the year, as well as seeing a psychologist and my GP regularly. Believe me when I say that it costs a lot to be in this much pain every day.
This week, we attacked my neck, back and skull as I lay on my side. From this angle, my acupuncturist was able to hit a spot in my neck that literally kicked back. When this happens, it's like being punched from the inside, but it's a good thing -- a release -- but the ache is intense. He hooks the key areas up to wires, which will zap all the attached needles with an electric charge to try to get those areas to release more tension. The position I'm lying in means that I can feel a sharp pain, kind of an internal pulling in my hip. I assume this is internal scarring from my original pain, where my appendix once lived. It feels like a lowkey version of the actual appendicitis pain. I meditate to cope with it. If I move too much I might pull one of the needles out, so it’s best to just sit with it.
After acupuncture, I go to the movies with a friend. I make sure to stop by the supermarket first, as I need to pick up some snacks that I can actually eat, without irritating my stomach.
It's been a busy week, and although I'm very aware that I should be doing my self-care strategies now more than ever -- meditating, my morning pages -- I just can’t seem to find the time.
With a concert directly after work, I was in a rush to get into the office with my face already done for the evening. All of this eats into the time I knew I should be spending looking after myself, but it is what it is.
As a result of this, my PMDD anxiety was still flaring, and I was on edge all day. It’s not ideal, considering it was 37 degrees, and I find the heat hard to deal with at the best of times. Basically? I was in a foul mood, and it's not a very productive day.
Although I love going to concerts, they inevitably spike my pain and my anxiety. They make me so happy, but the cost of being around so many people, having to sit in seats ziptied together, it’s not fun for someone with chronic pain. Because my central nervous system is basically on high alert 24/7, being smushed up against a stranger for hours -- something that’s so simple -- can flare my pain.
When I went to see Justin Bieber, this simple act of having to stand so close to someone I didn’t know, of trying to not be jostled, of twisting in order to dance away from them, all of that resulted in a weird back injury that woke me up in the middle of the night in agony, an injury that’s currently the primary source of my pain, even now, when the concert was in March 2017.
At the show, I could feel this tension flaring -- the nerve pain shooting through my right leg, the muscle pain aching behind my shoulder blade, inching up my neck and down my arm. It poured at the show, so I made a mental note to take extra immune boosters while standing in the downpour, completely saturated. I don't need to get sick when I have such a busy few weeks ahead, as it will effectively clear my schedule if I catch a cold.
After getting home super late (for me, at least. It was 1:30am) and after having a few drinks, I was starving. With nothing on hand to eat, I ordered McDonald’s, knowing that it was going to mess my system up. I eat and go to bed.
Predictably, I woke up EXHAUSTED, sore and bloated. It was partially the concert, partially just because mornings are the worst for my pain anyway, partially because I can't take my anti-inflammatories after drinking, partially from the drinking, partially because I ate McDonald’s. It's a lot, you know?
It took me hours to get out of bed, and I didn't leave the house all day. My friend came over, and we watched a movie in the afternoon. The concert was worth it, but the day was a write-off for any kind of productivity, so it’s good that I have a friend willing to come to me.
We had a nice time, and then I went to bed at 8:30pm, after popping a Valium and a Panadeine Forte.
I woke up feeling much more rested, but as my period inches closer, my body is paying the price. There’s a constant pain in my lower back that makes it feel like my spine wants to burrow through my back and out of my body, like the tongue in that beer ad I think about all the time.
My breasts are aching, and my nerve pain is flaring. When this happens, my foot tingles constantly. My knee aches, my right hip has this kind of shark bite of pain that radiates from the spot where my appendix once lived.
Needless to say, my anxiety levels were not great today, and my patience is close to zero. As I leave the house to go meet a friend and see a movie, back aching and everything else in tow, I’m angered by the unbridled stupidity of everyone around me with no spacial awareness, no thought for the people around them and how they’re being an inconvenience when it would be SO EASY to take two steps to the right and make everyone’s life easier.
In the film, the girl who was sitting to my left had a coughing fit that lasted for an hour. A FULL HOUR. She didn't excuse herself to go deal with it, and even sitting here now writing about it, I’m FURIOUS. I considered saying something, I turned to look at her pointedly many times, I considered offering her my Ventolin inhaler. I did nothing but seethe in silence, my blood pumping with a fiery hormonal rage.
Arriving home, I recognised my stress, resolved to meditate, and then took some pills, instead. I plan to meditate tomorrow morning.