Today is the anniversary of my 1st blog. I thought it fitting to reflect on the year; Emily’s progress, the subtle changes that experience has delivered to Emily and me, the evolution of our separate short and long-term goals. Continue reading
I was up at dawn and cycling energetically with my chum; up hills, down slopes and around bends. My Strava (iphone app that plots course and speed) was on and we were loving the fresh bright morning. We arrived, puce and sweaty, at our local cafe for our regular coffee fix where we were greeted by a blackboard notice telling us “Never give up!”
Spinal cord injury (SCI) isn’t a game but in an analogy it would be the snakes and ladders board game played in my childhood. Considering SCI there can be more snakes to slip and slide down than helpful ladders when manoeuvring towards a goal. The best ladder for us has been establishing some mentors. Our mentors are experienced carers and wheelchair users, they shed light on some complexities and the shortcuts that help life roll a little more smoothly. Mentoring is another word for friendship with a practical aspect to conversations, someone to bounce an idea off, someone to ask, someone to confide in or share in a joke.
Relaxation can be the last thing we think about during our busy day but crucially important for us all. Without a moment to remember ourselves within the daily routine we can loose perspective. Relaxation readjusts my psyche so that I am calmer and surprisingly more energised.
Most every family will live their lives safe in the knowledge that only Grandma and a rare visiting Auntie will see them in their favourite Disney PJ’s, yawning on the way to their morning ablution. I wake up everyday to greet a variety of carers as they enter our home, 7.00am the door bell rings and our privacy evaporates. I mostly bump into the roster-ed carer on the stairs; I’m usually sleepy, padding barefoot towards the kettle for morning tea.
Emily and I have been venturing out even in this winter weather. We have been investigating new venues and revisiting old favourites. The NSW State Library is a handy meeting place on Macquarie Street as fairly central in Sydney and there’s a great little cafe, bathed in sunshine the day we went. Continue reading
Emily had visitors on Friday, one of them was only three months old so his mum needed a celebration scone!
I was walking behind Emily yesterday and realised our Occupational Therapist at Royal Rehab based at Ryde who designed a wheelchair accessory for Emily in 2012 was remarkable! Her design is still going strong in 2014 and there’s no necessity to reinvent or adapt her original. As it’s said “if it ain’t broke, don’t fix it” but with time things do evolve and change is inevitable as time passes.
I was loitering in the University of Sydney Disability Services Office while Emily enrolled for semester two studies. The University produce various Counselling and Psychological Service information sheets for the students and the one entitled Tackling Change Head On caught my eye as I am trying to address major changes in my life; becoming a primary carer.
I thought I’d look at this sheet and modify its message for carers. Change can be awkward to address and experience with setbacks inevitable.The key to overcoming setbacks is; identifying exactly what I want to achieve, being clear about why it is important to me, and then figuring out what is getting in the way of taking the action that matches where I want my life to go.
- What is my aim? What are the changes I want to live my life by? What actions will I need to take to change. I thought about these questions. My aim is to be as healthy, social and energetic as I can be within my caring role. I aim to facilitate Emily’s independence by gently reinforcing her confidence, ability and supporting her lifestyle choices. I want to be a redundant carer.
- What gets in the way? The information sheet instructed me to: Write down all of my excuses, cross off the ones that are ridiculous and find a solution to those that are genuine. My most used excuse is: Emily can’t manage without me! The truth is that Emily is gaining in confidence and ability everyday and if I don’t detach myself she will never experience independent living. She won’t gain any insights into how to manage alone or insights into the issues that need to be addressed in order for her to cope more efficiently alone. It takes courage to leave Emily and it’s a challenge for me to ‘let go’. I have to accept that Emily might falter alone but that mustn’t get in the way of having a go. I use “I can’t leave Emily” as an excuse although I so firmly believe my own sentiments that I struggle to see it as an excuse. On reflection I have to be honest and ask myself if Emily really needs me around as attentively? I could leave her more often with no detrimental affect and probably more resilience would be gained by us both. The human tendency to avoid discomfort hinders our ability to achieve change. I have to embrace a degree of discomfort, guilt and anxiety when leaving Emily alone to learn.
- Keep it up. I experience positive reinforcement of my changing behaviour; it is such a delight to establish Emily’s independent that I am motivated to leave her.
- Summed up:
I need to be clear about what changes I want and where I want to head
I need to take do-able regular steps
I need to acknowledge excuses and overcome any that pop up in my way
I must remember to learn from any wobbles and setbacks that happen but keep going.
Change can only happen with resolve, determination and focus. I am resolved to manage the changing demands within my role as carer. I also want to enjoy this life journey with Emily as our goals are intertwined; each of us wants a fully active, interesting and purposeful life – that’s achievable with hard work and a coffee on our way!
Today we decided on a vegetarian curry for dinner using fresh ingredients, recipe below. Cooking healthily for Emily, and my family, is always uppermost in my mind when meal planning. I think about nutrition and calories as Emily needs lots of vitamins and minerals with only 1200 calories (5000 Kilojoules) a day. Eating enough food to provide valuable energy without excess which would lead to weight gain. Emily, as a wheelchair user, has to be more careful than others not to consume more than she requires. At home I can cook with fresh ingredients and limit processed foods, sugar and salt but what healthy options exist when we are out and about in restaurants?
I use IT and social media everyday, so much so that I hardly think about this technology. The crux of the matter is not my use of technology; Facebook, Twitter or my blog. It’s Emily’s use of technology which is when science, the evolution of the computer/ipad and the rapid development of assistive commodities show a major impact.
Emily’s injury has altered her life’s course and she has had to become more cerebral than physical. She returned to University to retrain into a role that accommodates her physical abilities. She learns via online lectures, she records her notes with swipes and touches on an ipad screen, she has voice recognition when writing on the computer. She has C-bus wiring to open doors in the home. Lights and heaters are on timers so that her environment is controlled without any need for daily commands. Improvements in technology allow Emily to interact in society at a heightened level in comparison to some decades past. A new age approaches when robotic technology may even have her on her feet?
I have set up google searches so that I am alerted daily to articles published on the WWW which include key words like spinal cord injury (SCI). The publications that I access inform me of SCI news around the globe. I am aware that teams are developing epidural stimulation therapy (see here), that Exoskeletons have become available in the USA (see here ) and that Hong Kong has an advanced research team led by Dr Wise which involves stem cells (see here). This is impactual life changing technology, research and development on this level has the eyes of the world watching, we’re listening; all waiting with hope. Research and development in technologies have initiated change, change in the approach to SCI care, change that’s pushed for better SCI rehabilitation and the hope of a future liberated from the continual use of a wheelchair.
I feel very humble with my primitive use of IT and social media. I developed my Everydaycaring blog as a forum to resonate with others. I highlight there is a fine balance between sitting in front of a screen and typing vs getting outside to socialize with an actual friend, hot beverage and scrummy muffin! The muffin sways me and I’m out of the house and up the road to the nearest cafe to meet friends. Social media is a great opportunity to connect, especially for many in isolated communities or for those that are housebound. Facebook keeps us all in touch with family and friends. I am just mindful that interacting with people who are actually present benefits my psyche and can not be replaced by Twitter, Facebook and WhatsApp. It might appear that my comments are contradictory as a blogger, as I post on Facebook @Everydaycaring and I tweet on Twitter #Everydaycaring but I hope my message is always clear; I advocate that we all need to engage in activities outside the home so that there is some real respite and tangible interaction in our day, week, month, that goes for me and Emily.
As I reflect on my and Emily’s use of technology it’s obvious we have vastly different needs. I use IT to communicate and share, I aim to strike a chord with others so there is a unity of everyday caring. Technology is a marvelous resource and welcomed by all not just the physically challenged BUT it is the continued development of medical, social and physical assistive technology that is fundamentally imperative for the physically challenged. Technologies impact in the SCI arena is immeasurable, not only in it’s practical application but in the hope it instills.
See Carers NSW for further resources for carers
See SCIA for news on SCI research
See Spinalcure for more news on SCI research.
See Spinalnetwork for news on work towards a SCI cure. Also on 13th October Spinalnetwork host Connections 2014 at Royal Randwick Racecourse in Sydney. Connections 2014 brings together researchers, clinicians, decision-makers and the community in a single interactive forum to discuss spinal cord injury research Down Under. As well as some of our best and brightest home grown experts, we will welcome two leading international speakers including Dr Kim Anderson from the Miami Project to Cure Paralysis.
Delighted to see Emily as a face on Spinalnetwork’s website. We are looking forward to Connections 2014, see you there!