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.
If 2020 was a year of shut-down, 2021 has proven to be the year of overwhelm, judging by what people are expressing out there. How do you ensure self-care, when you are assailed by a mighty to-do list, each and every day? I have had the privilege lately, of bearing witness to three incredible women, who have taken health challenges by the horns, and are fighting like hell. Learning to walk again, learning to live anew and learning to wait for answers. They are true heroines. They have seen their bodies broken down and rebuilt. They get up and face each day with courage.
I am working, studying; juggling. Trying to fit everything in that I need to do to build a future for myself and my daughter. I sometimes come home, and collapse into bed without dinner, my spine aching so much that I simply cannot move. My studies alone entail at least 20 hours commitment each week. I had to laugh the other day. I received a curt email, saying that as I’d missed a message, requesting a self-tape to be sent immediately, I was going to be ‘released’ from this particular representation. I had been at work, and couldn’t have done it in time. I was given zero notice. Ordinarily, I would have felt terrible, castigating myself for the missed opportunity. This time, I laughed. Even if I stayed awake 24 hours a day, I still wouldn’t get through that day’s messages and notifications on various social media. It just isn’t possible. I can only do what I can do. The same applies to you.
My day’s are usually broken up as follows:
Feeding pets and getting ready for the day, when I rise at 4.30am
Quick breakfast, then either travelling to work or starting the day’s studies or work from home
Fitting in a quick lunch
Scanning emails and messages and replying to as many as I can
Doctor appointments and necessary exercise to strengthen my bones
Grocery shopping, laundry and cleaning the house
Paying bills and organising my calendar
A walk in the evening, before a quick dinner
Continue to work/study until around 9pm (sometimes later)
Rinse, recycle and repeat, day after day.
I am trying to give myself one day off a week (I’m trying). The correspondence outlaid in the email I received, made my heart thud wildly, before I acknowledged the absurdity of the request. I am only one person. I can’t be ‘on’ 24/7, although heaven knows, I have tried. Witnessing my friend’s health battles has been a wake-up. Their lives have contracted in and all that matters at the moment, is their healing. The lists and demands that we think are so important fade, like old, useless receipts we keep in our wallets for reasons unknown. You can’t even decipher the words on the paper anymore. How do you keep going, particularly when you are the sole breadwinner and have health battles? Here are my tips:
Make a bullet list of what needs to be done, but put the tasks into categories. What has to be done today? What won’t matter if you put it off? What needs to be done by the end of the week? Focus on what is most pressing. I find it thrilling, to highlight what has been accomplished from the list at day’s end.
Get up and move around every hour, on the hour. Make yourself a pot of tea or coffee
Ensure you stop for lunch!
Go for a walk at the end of the day. It sets a demarcation line between work and leisure time
Ensure you are hydrated
Post-it notes are my best friend and ensure I can sleep soundly, knowing I have put a pressing task onto paper for the day ahead
Break tasks into 45 minute increments. I find it helps keep me focused
I find rosemary and peppermint oils help to refresh my brain
Be kind to yourself. It seems obvious, but often, it’s the one thing we forget to do
Ensure you ‘star’ or otherwise highlight contacts and emails you don’t want to miss, in amongst the masses you receive each day
I am endeavouring to see friends I haven’t seen for a long time. Time gets away, doesn’t it, and in the pandemic, it was hard to see people we love. Yesterday, I saw my friend, who happens to be a superb florist. We chatted to the glorious customers who frequent her shop, and I literally lost track of time. I had forgotten what that felt like, to be able to stop and be still awhile.
I also saw friends I hadn’t managed to see in over a year. I almost cried when I spotted them; the beauty of their faces, the familiarity of their voices. People who have travelled through life and its many twists and turns with me. I am trying to snatch time back, anyway I can. I want to make my daughter proud; by witnessing me achieve everything I set out to provide for us. I want my friends to know I love them, by creating pockets of time, especially for them. I want to get the balance right. I am not there yet, but am on my way. Life is so very precious; alternately, fine as a silver thread and dense as tar, often in the same day. I think the most desired of all things, is time. Let’s make the most of it.
I was fortunate enough to find a few sanctuaries around Sydney in my tumultuous youth. I find that if I neglect my visitations, I can’t settle. The first time I discovered this place, I was fourteen years old. I had run from the institution of where I had found myself. It was summer, and I looked longingly through the gate, incredulous and transfixed by the fun and frivolity I saw. These people had not a care in the world as they reclined on the sun lounges and waded in the water overlooking Sydney Harbour. I was both enchanted and detached from the spectacle, a few minutes by foot from my own nightmarish existence. A bird in a gilt-edged cage, put outside to witness other birds flying free.
The place where I was living cared little for me, and I later discovered that they hadn’t even noticed I was missing, such was their lack of interest. The next time I wandered, I had managed to scrounge up the modest entry fee to the baths. I was safe here. No monsters laid in wait, just fish, weaving between the people. The salt water cleansed my body, as it did my mind. I floated, I waded and I reclined. I could plan a future here. I could dream big, and imagine living to sixteen. I could imagine I lived in one of the lovely homes nearby and had slipped out for a dip. I would cry as I left to go up the hill, back to my prison. The baths were sacred ground, untouched by evil.
My sanctuary never left my thoughts or heart, and when I had my daughter, I couldn’t wait to bring her here. I had a moment, when I first saw her as a toddler, playing in the sand, and swimming in the water. I survived, and had introduced my daughter to my paradise. As nonsense once again rained down on me, I took my daughter back to the baths.
We found shade under a grand old tree, and ate the most splendid chips. We swam with the great-grandchildren of the fishes I had once encountered, and experienced the reunification only a sea breeze can offer. I was home.
We attended an extraordinary home school Christmas party last week! There were craft tables, snow, disco lights, food and even Santa made an appearance! The kids wrapped up some hapless dads in Christmas paper and decorated them. We had to remind them to provide air holes so they could breathe!
I met some dear friends at Luna Park, and we waited patiently in line at the gift shop. There were a bunch of school kids in the shop, and one asked to see the contents of a show bag. The friendly assistant held up each item separately, and gave the kid a blow-by-blow description of each piece. Five minutes passed, and he grabbed another showbag and did the same! We were in hysterics, my mind wandering to the infamous scene from Love Actuallywith Rowan Atkinson. Fifteen minutes later, we were served! It was kind of nice to be in a situation where the assistant had all the time in the world to help a kid make the best choice of showbag. You are meant to be on Island time during the holidays!
I coerced my friend into reclining on the moon seat, and then fell about laughing when the germ-a-phobe came across something unidentifiable and sticky with her hand!
My daughter and I went to a friend’s house for a playdate. Now this friend is fighting a health battle, and yet had gone to so much trouble. There were red tablecloths, crackers and decorations on the tables. There was a feast prepared, and carols playing. Her gorgeous daughter had made all the kids a gift; a precious decoration for the tree. Another friend (who had endured a tough year), remarked that it really felt like Christmas now. How gracious and kind was this lady, to go to so much trouble. It is a day I will never forget.
I was having a gin with another friend, and when she excused herself to go to the bathroom, two older men-gigantic in stature came and sat down next to us. When she came back, she was alarmed to find one of the fellows had sat himself within an inch of her seat! We both shrugged and talked about how some people have no concept of space. She moved her seat around when they began to argue. Finally, the fellow who had taken over that side of the table apologized. “We are Glaswegian, and tryin’ to sort out an argument; excuse our bad language. We are very sorry.” We started giggling and couldn’t stop. Their tiff sorted, they left. I have missed this friend, and love that I’m now able to catch up with those I haven’t been able to see all year.
This is a friend’s dog. Isn’t she beautiful?!
I have had to have a few days at home, after the spinal pain became unmanageable. Circumstances saw me having to postpone my visits to specialists and a pain clinic during 2016, something I will have to do during 2017.
One more thought, posted by a glorious friend yesterday.
The past five years, in particular, have seen me running around, unable to pause. It were as though there was a big scary monster pursuing me. I became embroiled in the world of demanding schedules, with cross-cultural references, faces and world news seared into my mind. If I stopped, I would have to acknowledge grief. I would have to feel physical pain. Hell, I may even cry and fall apart. I was on a trajectory of keeping my name out there, producing work and being connected. It helped that I desired to escape the house as much as possible. Armed with a little bag of snacks and my Opal card, I ran. I move to a beautiful and peaceful home and what happens? Every memory is vying for attention. Within the peace has come a storm.
I had to laugh the other night. My daughter was cuddled up next to me, and I woke with the most excruciating lower back pain at 1am. I fumbled in my bedside drawer and found my TENS machine. Drowsily attaching the pads, I turned it on. I gave myself quite the electric shock, as I had unwittingly put it onto top speed! I lay there in agony, laughing whilst trying not to disturb my daughter. I read a book the other day, and it described in great detail, the ward at the Children’s Hospital where I had spent many weeks at thirteen. It talked of the ICU. The moments I was actually asleep, were spent dreaming of these places. The smells, sights and sounds were alive.
I have just wanted to sit and cry. Chronic pain is merciless and cruel. Trying to manage life takes everything I have. I will book in for scans to see where I am up to. My main goal is to keep walking. If that is threatened, I will have surgery. At the moment, I am preparing meals, meditating, setting up a new computer and preparing to write a new book, detailing some of Sydney’s secrets. I am exhausted and excited at the same time. I know I have a degree of depression, but its hard to tell what is caused solely by not sleeping and being in pain. It is confusing, to be able to laugh whilst feeling crummy. To have anxiety when the phone rings and yet be able to do other scary things. Damn, we are complex beings!
I sit and grieve for those whom I lost. Grief doesn’t happen on cue, rather it comes upon us like a wave crashing in. Physical pain is the same. Sometimes it can be held back so as to be tolerable, whilst other times, it cant. Just as I have times where I can sleep for 12 hours through exhaustion, so I have times when I sit and cry. There is nothing to be done, but feel it and allow it. I look out at this rainy day and see the torrent. I also see how it is nourishing the many rose buds in my garden. This week, I am not going anywhere. I am staying home, putting on my brace as though it were a seatbelt and preparing myself. Songs are coming into my mind, alongside memories. Its okay. I am going to be okay.
Alongside the full calendar and buzzing phone is a woman desperate for rest. I just can’t do things at the moment. I need to process what I am thinking and feeling. How often do we actually do that? Allow ourselves time to determine what it is ours and what belongs to other people? When I am done, I shall return to society with a full cup, rather than a cracked glass, leaking fluid, rather like my spinal discs. Dancer, the budgie, has had moments of jealousy since we got Noel the cockatiel. If Noel dares to toddle near her, she has a tendency to let off a string of budgie expletives and try to pull her tail. I have just had to assure Dancer that she is valuable and just as loved. If I go into retreat, I hope I am just as loved as during the times when I am flitting from event to event. There is nothing that anyone can help me with. I just need rest, to come up from the tidal wave of 2015. To scan this spine and cleanse my heart and mind.
Rain doesn’t last forever, but its effects are felt deep in the soil. I am coming out of a haze even I cant fully comprehend. I think that is what keeps us silent about these times. We find it hard to articulate what is going on within us. After having a baby, we were once kept in hospital for quite a while. Sundays were a day of rest. School holidays were spent in unscheduled splendour. Maybe it’s time to just be and let the days unfurl again.
I have had insomnia since I was a child. When I was lucky, I could snatch an afternoon nap, or four hours sleep at night. Other times, the insomnia was more severe, and I didn’t sleep at all. I was determined not to get hooked on sedatives, after seeing the damage they could do. I tried self-help books, hypnotherapy, essential oils, herbal medicine and everything in between. You name it, I have tried it. After several weeks of no sleep at all, I hit the wall. I was unable to recall the most trivial of details involved in the minutiae of life. I stumbled over sentences and couldn’t get my thoughts together.
Insomnia is a form of torture. Too tired to read or work in the middle of the night. Too tired to even watch infomercials, which is just as well, as I would be the proud owner of several tonnes of crap by now. Too tired to cry in frustration. A caffeine hit and hot shower and busy days with no time for rest. By six pm I would be exhausted. I put myself through an elaborate winding down ritual. Sadly, I wonder how many of those we read about in the media have been lost due to insomnia scrambling their cognitive processes? I can imagine them swallowing a few more tablets in the early hours, desperate to get some sleep. There have been studies done on this. http://www.abc.net.au/health/library/stories/2010/01/21/2797098.htm
At least the cherub rests.
I don’t know if I have been feeling more stressed, or whether my chronic pain is exacerbating the insomnia. Whether the detritus of the day is having a party in my subconscious at night. None of it matters at the moment. I just need sleep. I had been putting it off, but relented and got some sleeping pills. I took a low dose, and within thirty minutes, I was out! I woke this morning with cognitive clarity and felt on top of things at last. I know its not a long-term solution, but its a start. I had to cancel weekend plans, as I felt like passing out every time I stood. I couldn’t answer simple questions and driving was too dangerous to contemplate. Insomnia was taking over my life. It was being drained of all colour. To my insomnia comrades, I salute you and your ability to continue with your busy life. The effort involved is extraordinary. I hope we all get some shut-eye consistently from hence forth!
It was hectic at the airport, even at dawn. My daughter got her little case spontaneously searched and hands on hips, rebuked security. “I am only a kid! What would I have a bomb for?!” They smiled, and I hurried her along. We got to our destination and were alarmed that our hire car wasn’t actually waiting for us at the airport. I had booked online and presumed it would be there. I was bit concerned that a man I didn’t know took us in a mini van to a place we didn’t know. Very relieved that he pulled up at an actual caryard and we got our car! Okay, step one down. My daughter and I made a unilateral decision to go to Tropical Fruit World. Barry, our tour guide, had that dry, laconic Qld wit I adored. When we all raised our arms in reply to his asking if we lived in NSW, he looked at us with a great deal of pity. After learning about the medicinal properties of fruit, I made a mental note to eat more of them in 2014. We arrived at the resort, bone weary but had an excited little girl with us. She immediately got in the pool, and as kids do, made many new friends.
She wanted to try the new ice-skating rink out, and I helped her lace up her boots. I had a lump in my throat as I watched other parents help my unsteady child. Soon, she had abandoned the ramp, and was whizzing around. Times like these, I feel quietly robbed. I would have given anything to be on that ice with her. When the time was up, I was greeted with a warm hug. “I pray that the doctors find a cure for your bones mummy.” She kissed me and I was healed.
Writing my book was one of the hardest things I have undertaken in life. I am a dreamer, a poet. My friends call me a fairy, and it is true. I have a tenuous footing on the earth, and feel more connected to the stars. I love kid’s movies and art. Having the pull in my soul to write a book fused in stark reality, stripped of fairy-tale nuances has been hard. A big message within the pages is to never let anyone measure your worth. Whether they be the flatterers or the persecutors, they have an angle and it is skewed. I have tried to allow my worth and merit to bubble up from a well deep inside my soul. Yet, upon reflection, there are myriad ways I, and many others, sabotage that clear spring filled with self-belief and self-worth. The fears that come up at night. The coffee I drink when I am already jittery. The choice to drink that extra glass of wine that leaves me feeling retched the next day. Not putting aside time to meditate, to exercise or even breathe deeply into my lungs. Picking up junk and ingesting it when my body needs nourishment in the form of a decent meal I actually sit down to eat. So many unconscious acts which pollute that spring. I am tired of sabotaging my energy, my clarity and health. I don’t wish to go through life habitually. I shall do what I can to make the best choices for my body. Despite everything, despite the wounds rained down on this body, I still believe in it and the soul it houses. I have to start proving it.
RAPHAELA ANGELOU 