Pain and Anxiety


When I first read about Jo Cameron-the ease in which she moves through the world- I envied her. Imagine not being woken by niggling fears surfacing at 2am? What a joy to not suffer anxiety, nor terrors, from real or imagined foes! As for aches and pains, imagine not suffering with any? How liberated would you feel?

 

Jo Cameron was interviewed in the New York Times recently. The potential for her genes to be studied, so that pain and anxiety in everyday patients may be diluted, is a tantalising prospect. It may result in the ability to demand that a certain gene calms the hell down!

 

Along with the obvious advantages to living as Jo Cameron does, there are also disadvantages. I have told my daughter to be aware of that feeling in the pit of her stomach, that relays whether a situation or person is giving off good vibes, or not. Are they making her feel anxious? It is a sense that over-rides all logic, and hence doesn’t involve the brain, as much as the gut. I have told her to always honour that feeling, and have promised that I shall too. Imagine if we didn’t have any warning of danger? No rapid heartbeat, sweating, nor adrenaline in overdrive? There can be good stressors, which pivot us beyond what we believed were the limits of what we can endure. Studying, exams, public speaking. Anxiety can be used as a helpful resource, and not a hindrance in these cases.

When I went into labour, I thought they were mild contractions, involving my lower back. Compared to endometriosis pain, it was a walk in the park! The back pain grew worse, which saw me agree to finally go to hospital. It turned out that I was in full labour! If I hadn’t had the back pain, I would never have known. Every segment of my spine is damaged. There are bony spurs growing on my neck, all the way down. My spinal canal is narrowing, leaving little room for the nerves. I am sometimes out of my mind with the pain, and as a seasoned pain-sufferer, I often welcome it. It gets so bad that my brain packs an overnight bag, and we escape the minutiae of everyday life. I laugh more heartily, dream more vividly, and write more eloquently than I would have done.  I appreciate the spider senses in my solar plexus going into overdrive if confronted with danger. The same goes with my hand retracted from a steaming cup, before being scolded.

It would be lovely to have the ability to adjust the settings on anxiety and pain, without turning them off completely. Perhaps, Jo Cameron holds the answers we have been seeking.

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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.

 

Abba, Lolo Lovina, Red Wine and Rainbows


The week that was…

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My daughter played Titania in a Midsummer Nights Dream. She loved the experience and wants to do more acting! I was very proud of her.

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I took my daughter to see Inside Out, a spectacular film, which addresses depression. It illustrates how a young person can break down and also be rebuilt. Afterward, we had a few chores to see to. As I walked through the shopping centre, I started to stumble. I had an horrific pain through my left foot, shooting up my leg and into my spine. This was annoying, as I usually have that sort of pain on my right side. There I was, holding onto a trolley, my daughter gently guiding both it and I. I met a friend, who saw that I was in agony. She had just been to the post office to pick up a box filled with wine from the Margaret River region. She handed me a bottle of red, of which I am immensely grateful. I managed to get home, poured myself a glass and lay down. New symptoms added to the mix shake things up. At least its a change to the pathways of pain!

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Should I get a device that turns zucchini into spaghetti? Hang on, I have one but have never used it!

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We went on a cruise around Sydney Harbor Friday night. My daughter loves Abba, and was delighted with the tribute band.

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Anzac Bridge, Sydney
Anzac Bridge, Sydney

Here is an excellent article on the machinations of PTSD. I found myself nodding in agreement throughout.

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Saturday night, we went to Marrickville Town hall, to a Masquerade Balkan Beats Ball. The divine Rroma Gypsy fusion band, Lolo Lovina got us all up dancing.

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My daughter went for it on the dance floor, enthralled with the frantic beat and unencumbered joy. When life is rough and you are tired and in pain, my suggestion is get yourself along to a festival. Go for a walk. Shake up your world.

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We saw a lot of rainbows on the internet, and it filled me with joy! Things can change and advance, yay!

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This is so silly. I love it!
This is so silly. I love it!

 

 

Spoons


Usually I am okay with the delegation of my spoons. You know, the ones those with relentless pain are given each day? You only get a few, so need to use them wisely. My daughter has started a program in the theatre. She absolutely loves it, and it has been a pleasure to transport her there. The other day though, I was still recovering from the pneumonia. Several nights of relentless coughing had made my spine excruciating, and my chest burnt. When one is running out of spoons, the promise of rest, of laying supine is tantalizing. ‘Ten minutes walk to the station, then an hour on the train. Once you round the corner to home, you can rest,’ I promised myself. Ha! There was a work vehicle outside, and a fellow cutting up steel. Yes, tonight is a splendid night to do several hours of building work, whilst your dog barks incessantly and your whole family hollers a metre or so from my home.

I am usually a considered person, not prone to losing the plot, but this particular night I did. It wasn’t much on the angry scale, but for me (who hates confrontation), it was spectacular! The pain escalated, and the noise was phenomenal. Now when one has no spoons left, one can get a bit beside oneself. I drank red wine, and turned up my stereo. I played Sam Smith at full volume. I paced. Pain makes one agitated. The only thing that helps me is silence and rest. I went through my list of strategies. Hot bath, liniments, Tens Machine, brace, etc. It has taken me a few days to gather more spoons. Every event has to have a break in between, each outing meticulously planned. Sometimes the best strategies can be brought down by the actions of others. The good news is I survived, and the noisy people have been introduced to Sam Smith, Indie Artists, The Old Married Couple and many more. Don’t mess with an overtaxed lady who is in excruciating pain! They were very fortunate that I was restrained and didn’t shove my collection of rusty and warped old spoons where the sun doesn’t shine!

24 Hours


Yesterday I woke up feeling ill. My specialist has put me on a new medication, and I know I have to give myself time to adjust. It was bitterly cold and the sky was grey. Someone had smeared the sky with charcoal. My stomach was distended as the endometriosis grew, fed by this new drug, which I need. “Look at the big picture, Raphie,” I urged. Always look at the big picture. I felt the urge to scream from the pain, and the desire to clean and discard. I did both. Why the hell do we keep the things we do? Old numbers on scraps of paper, old ways of being. I put an angel who had lost her wings into the pile of donations. I had stored my maternity clothes in a special drawer. I looked at them, and wondered why I had held on so long. My subconscious must surely have been seared every time I went past that drawer, even if I was unaware. As I washed up, I exhaled heavily. A burden had been lifted. I then heard the ‘snap’ of my spine as I was dragged along the ground after my fall. It was as distinct as though it were happening then and there. “Oh my God!” I cried, bursting into tears. I sat with the memory a while. I assured myself that it was natural to have events, sounds, smells and more clamour to the forefront on the anniversary. On White Ribbon Night.

After school pickup, a friend popped in. She hugged me, and said how sorry she was that today was “the day.” It meant the world to have it acknowledged. This lady knows all about “those days.” The pain ramped up, and I was in a holding pattern of agony, fevers and chills. There was to be a meeting of gentle souls around the corner that evening, and I determined that I would go. I didn’t want to be home with my memories. The hostess is a vegan, and she had made this delicious main meal.

Tofu and nuts.
Tofu and nuts.

We laughed and talked about foster kids, homelessness, travelling, art and beauty. We sipped coconut water and made sure room was saved for this.
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I didn’t stay late, and I gave my gorgeous friend a tight hug and thanked her. My mind had been summoned to wondrous places, leaving that dark building on a winter’s night. The pain was softened by the graciousness of a nourishing meal and a room full of good people. I went home and hugged my little girl, smoothing her tendrils of honeyed hair. “May your world be markedly different, my darling.”