All the dreadful diagnosis and radiology reports are stored somewhere deep in the recesses of my office. The scripts are filled and the date when new ones will be required have been diarised. Some days, the pain can be a reasonable 6/10. You need to work; you want to work. You feel okay, until you’re not. Trying to engage with people whilst sharp pieces of bone are lodged in your spinal canal for all eternity is tiresome. You have to rise above; transcend it. You need to focus more; work harder than others might.

I had a friend demonstrate a mop that has a receptacle for a eucalyptus oil and vinegar solution, and can be used on tiles and floorboards. You don’t need to lug a bucket of sudsy water from room to room! The knowledge of this excited me (more than is natural), and I was a convert after trying it out. My Friday night was spent sourcing this wondrous mop. When you are in constant pain, it’s the little things that mean a great deal. Anything that gives one comfort, is a beautiful thing.

Hiding within the liniments and machines, the Lyrica and other meds, is the same person you were before. You have the same ideals, the same dreams and the same goals. The mind is determined, but the body can sometimes falter. I had to cancel plans on the weekend. I was loathe to disappoint two young people and some amazing adults, and left it until I had to face the inevitable. I couldn’t carry on. What happened next filled my heart. I was encased in love. These beautiful people understood, completely and entirely, and checked up on me to ensure I had everything I needed. The relief was palpable. When the spoons allotted for the day are gone, they are gone.

Neurological and orthopaedic pain can be merciless, wiping you of time, energy and peace. It helps to consider the tides, determined by the moon’s gravitational pull. Sometimes, you experience high tide, where you can do everything your calendar dictates. Sometimes, you are pulled into yourself. Both have their time and place. Being able to adapt to what the moon is dictating, is necessary. If I have learnt anything in the past year, in the midst of the pandemic, is that nothing is set in concrete. Pain and health, security and insecurity can besiege a life, despite what we command. It is best to honour our bodies.

Halfway between Home and the Northern Beaches

The Saturday started off with a vibe of foreboding. We had errands to run at the local shops, and my back pain was a 20/10. It was so bad that I had to take one of my night-time medications whilst I was out, just to cope with the travel back home. I couldn’t have walked another step without it. Back home, I had a bath, and rubbed every liniment I owned onto my spine. I zapped my back, braced it, and would have chanted had it promised to help. I had no time for this nonsense! We were all packed to go see our dear friends on the Northern Beaches, and I wasn’t going to let anything stop us. My left kidney is twice as big as the right, and my spine is putting pressure on it, and other organs. My spinal canal is so narrow that they can’t loop wires up it to fit a spinal cord stimulator. Still, I press on. I have to ensure that my determination at the very least matches the force of the nerves being crushed. Yay! we made it onto the bus toward the station. I bit my lip every time we went over a bump, to the point that the inside of my mouth started bleeding. The train came on time, but then stopped abruptly at regular intervals. Apparently, the Vivid festival had caused public transport chaos. I started to feel anxious, knowing that I only had a finite amount of time before the pain ramped up again. I wanted to be safely encased in our friend’s home when it did.

The train stopped before Circular Quay and we were told that we couldn’t proceed for a while. Thirty minutes later, we rolled into Wynyard station. We needed to get the B-Line bus to the Northern Beaches, and there was nobody around to tell us where to go. We wandered the perimeter outside the station, and missed the first bus. My confusion grew, as the pain ramped up. Taking deep breaths hurt, as did trying to correct my posture. My right leg went from under me, leaving me with one functional leg, a walking stick and suitcase. Dismayed, I thought about returning home. I knew I would feel worse if I abandoned the visit we had all been looking forward to. I was halfway between home and our friend’s. Exhausted, we hopped on the next bus. I was climbing the walls in pain, and there were no seats. My daughter watched as commuters got off, and was on her way to secure a seat for me when a guy carrying a case of beer pushed past and sat down. She was having none of it, and demanded that he get up; that her mother needed the seat more than his beer!

An hour passed, and when we alighted, our friends were waiting. We were encased in hugs and love, and fed a curried vegetable pie. We listened to the Beatles and the next day, went to the beach. If we hadn’t gone, I would have felt sad at what the never-ending pain has taken from me. I would have felt awful for my daughter and our friends, who would have been understanding, but nonetheless…I would have missed the last hot day before winter curled it’s icy fingers around Sydney. I would have missed so much. Beauty, love and art… That is what makes life bearable. Particularly if you are going out of your mind with pain.

I am more than my pain

Last week, I watched a young woman jog by my house. We exchanged greetings, and I was hit by a body memory which revealed itself as sadness. I recalled that I had once roller-skated, rode a bike and horses, gone on amusement rides, danced, done yoga and aerobics. I was a very active kid, and loved to jog. These were my happy times, when I celebrated being in my body, rather than feeling detached. I loved putting my headphones on, and running for miles. I loved being able to contort my body, skating on ice and in the rink. I even loved the war wounds from falls off my bike after performing a hazardous stunt. No wonder I so enjoy watching my child perform extraordinary feats! She reminds me of myself as a kid.

When my spine broke, it all stopped. It was like a grandfather clock seized ticking when it’s owner died. I told myself that none of it mattered, that being alive was reward enough. It certainly was, but there was nobody to confide in for the grief of what was taken. It took years to overcome the panic of having a spine entirely fused. It feels unnatural, like somebody has glued you together as a statue, with immovable parts. Your mind craves the liberty of being able to stretch and bend, only you can’t. It was worse when the rods and Hartshill rectangle were inside my spine. I could feel the wires and screws, and desperately wanted them gone. For somebody that had been so active, I now had to go back to basics, applauding myself when I walked a hallway or up a solitary stair. Cheering myself on when I managed to lift my arms. It took years to retrieve the pieces of my psyche that had been thrown in the air. It has taken years to not feel trapped, as if I was in a permanent body cast.

I have done my utmost to feel like the spirited, irrepressible girl I had once been. As I age, my spine is getting worse. Taking deep breaths is breathtakingly hard. Sitting hurts, walking hurts, everything hurts, all the time. The recent diagnosis of Trigeminal Neuralgia has been hard to take. At a time in my life when I need to steer my daughter towards her high school years, and kick my own goals, my head is now complaining. Where once I would have climbed a tree or gone to the rink to skate as an emotional release, it is now found in theatres and cinemas. The bar was forcibly reset when I was fifteen, and triumphs are uncovered in how I get through my days. There is my daughter and I, doing life together, alongside a fragile spine, neck and head.

She went bowling a while ago, and when I told her friend’s mother that no, I wouldn’t be able to take part, she answered, ‘there’s not much you can do, is there?’ It took my breath away, such was the punch in the gut. She boasted of all the physical activities that she shares with her child. I know she didn’t mean to hurt me, but it hurt nonetheless. I have had to drown out the opinions of others, and remember that I coped with pregnancy when they were concerned I wouldn’t be able. I coped as a new mother, training in preparation by carrying around bags of potatoes and oranges whilst still pregnant. I did weights so my arms would be strong enough to hold her. My triumphs are quite different to other’s.

I fulfil my obligations to the best of my abilities and find joy in each day. Pain and gratitude can live together within one’s body. There are weeks that are truly horrendous, and not just due to pain. I require catheterization, and sometimes, there just isn’t the money to  buy the necessary amount of disposable’s for the week. That alone costs over $100. I ration myself,  to the point where my bladder isn’t damaged. Medications, specialist appointments and tests all cost above what my private health fund covers. Then there are the aides that make life easier. To be able to laugh and enjoy life in spite of it all, requires some doing at times! It can be devastatingly lonely, and frustrating. The stuff you don’t see on social media. I tend to go to ground, readying myself for the next round, particularly when I know there are busy days ahead.

I can cope with the medical stuff, and am preparing for quite a wild ride this year. There will be having fractured teeth pulled, root canals, impacted wisdom teeth, possibly having spinal cord stimulation and surgery for the TN. There will be medications to keep me going also, and trials for this and that. I just wish I could join my daughter in her trampolining and acrobatics. I wish I could go skating with her and climb trees. It’s funny, even though I am frightened of heights, I was never panicked whilst in the canopy of a tree. I felt safe. There is a tightrope to walk between acknowledging one’s pain and limitations and living life large. Concessions must be made, such as spacing out activities and factoring in rest. I am not ready to wave the white flag yet. Schooling my daughter these past four years has been a joy, and has given me such a wondrous gift. I know the best is yet to come, for her and I.

So there you have it, the blasted conundrum of living within an altered body. Feeling frustrated and angry, sad and exhausted, whilst also having a spirit of gratitude and wonder. Yes, wonder; at how you have adapted to your changing circumstance. Wonder at how beautiful life is. Gratitude that the arts have been able to replace physical feats as a means of release. I see my wounds as a gift of sorts. Animals and strangers come up to me routinely, as though they sense the vulnerability of a wounded person, and are drawn to it. It makes you approachable, and others tend to see you as someone they can confide in. It is a privilege, a compensation for the piercing pain. Time is too pressing and life too extraordinary to waste on nonsense; pain teaches you that. Time is a master that needs to be obeyed, and is followed to the second. My mind can cope if I prescribe it a timetable, and it knows that rest is coming up shortly.

I am learning as I go, often making up new rules on the spot. I am in it for the long haul, and can adapt as needed. I grieve when memories come up of skating and bowling, riding bikes and running. I grieve as needed, and acknowledge as required. There may be activities I can no longer partake in, but doing life isn’t one of them!

Coping with Chronic Pain

Some of my friends are in horrific pain from long-standing injuries. I have watched their struggles and bravery in absolute awe, and have been suprised at times when they ask me how the hell I manage. I reply that I could inquire the same of them! This past year, I had referals to see a neurosurgeon, urologist and attend a pain clinic. Have I been? The answer is no. I couldnt afford the time, which is a reason high on the list. Home schooling my daughter and attempting to finish a book has seen me beg for leave. Just as I feared I wouldnt be able to prolong what shall need to be done, I found I could get through. I want to wait until my daughter is a little older, until more structures are in place, both financially and otherwise. I have a remarkable friend who is in the process of having a neuro stimulator installed, and this may well be where I am heading. In the meantime, this is what I do to cope.

  1. Hot shower first thing in the morning. I have a seat in the shower, and let the heat spray on my spine. I then apply a mixture of essential oils (such as Wintergreen),  or a liniment to my spine.
  2. I use a back brace, which supports my abdomen and lower spine. It is extraordinary, the amount of support this gives. I got fitted at a medical supply store.
  3. Whenever I am sitting, I use a lumbar roll cushion in the small of my back to provide support. If I didn’t have this, I would need to lay down more than I do already!
  4. To support my spine and my kidneys, I drink a lot of water and herb tea each day. It is particularly important as I self-catheterize.
  5. I try to walk at least thirty minutes each day, or work with weights at home.
  6. I spend several hours a day laying propped up on support pillows on my orthopaedic bed. People don’t usually realize this, but it is a necessity after a particularly busy day! I am often in bed by 6.30pm. Fortunately, you can take your work with you!
  7. I was recently on a camp with my daughter. I knew that we would have a hectic schedule, and be sleeping on air mattresses. I advised my doctor, and made sure I had extra pain relief to help me cope. I also took my trusty TENS machine!
  8. I scheduled a rest day for when I arrived home. I needed it!
  9. I try not to compare my schedule with other people’s. Their journey is their own, particularly if they aren’t deaing with chronic pain and incapacitation. I can only do what I can.
  10. It is okay and normal to have down days; times when the pain is relentless and steals every ounce of energy. Roll with it. Your body needs to stop.

Be kind to yourself and don’t over-commit. It’s okay to play it by ear and see if you are up to activities on the day. It is a miracle that you are functioning at all, so give yourself a pat on the back! There will come a time when I will accept further treatment, and I will be grateful for it. Every life has seasons, and the time of reparation and recuperation shall arrive. In the interim, I listen to the concordant trill of birds. I sit outside in the sunshine and eat my lunch with a light breeze tapping my shoulder. I see friends and post silly memes to give myself a giggle. I try to reduce life into bite-size pieces of beauty, and live in the moment.

Getting my back up

To get from my town into the city, I have to take a bus and then a train. I usually have a spinal brace on, and carry a lumbar roll wherever I go to place in the small of my back. I take pain relief beforehand. I can cope with the stiffness and discomfort quite well, but if something extra is required, it messes with my system and the trip home is hell. I have had times when I have been doubled over on the trip home-whether by car or public transport. I was taking a certain medication twice a day to help the sciatic pain and I must say, it kept me walking. However, it was rendering me a zombie in the mornings, and I craved bed so I could go back to sleep. I now take one dose at night time, and whilst the pain has crept back during the afternoons, at least I can function in the morning and get my daughter where she needs to go.

For over twenty years, I have been in extreme pain, though I can still recall a time when I wasnt. I remember what it was like to skate, dance and be flexible. I miss those times. I have learnt what I can do by discovering what I can’t; where my limits are. My days are structured to the letter. Morning weights to keep my bones strong, and physio exercises for my spine. Brace and Tens machine after a shower and liniment. Morning medications to help with pain and inflammation. Of an evening, I have a bath, my medications and am usually in bed by 8.30. The relief of laying flat at the end of a day! I wake several times with the pain during the night. If I am held up during the day, and can’t take my meds at the usual time, the pain gets out of control, and I am almost delirious because of it. I have to have excellent time management.

One day a few months ago, I was given a friend’s newborn baby to hold. I have difficulty lifting-even raising my arms is excruciating- and whilst I loved holding this precious bundle, I was in agony for days afterward. I resent that the pain limits my ability to lift a precious baby. When my daughter came along, I bought a crib that I could wheel around the house, lifting her onto my lap when I was in a rocking chair to avoid strain on my spine. If my baby ever has her own babies, I want my spine to be strong enough to do the same. This is one major reason I work so hard in the here and now on my back!

Sitting for any length of time is a challenge. All the weight goes to three dessicated discs in my lumbar spine. If I am sitting too long in one spot, the pain is out of this world. Laying down is the most comfortable position. I worry when I need to take long car rides or plane trips, as I know pain will be a companion. I just want to try and hold it together. I am on as little pain medication as I can get away with, acutely aware of the balance between being functional and not. Without it, I would hardly be able to walk, let alone get out. I have had a few incidents lately when my right leg simply wouldnt do as it was told. I fell over in a toy shop, and a dear lady raced over with my daughter to help me back up!

Most days I cope, but there are days that are so abysmal that I break down. I fear that the time has come to undertake corrective surgery to keep me going. Then, I come back from the abyss. I hope the centre holds for a little bit longer. I am not frightened of what lays ahead; I just want to be strong enough to hold my grandbabies one day.