Many people think I went through enormous amounts of pain when I was burnt in 2003. During the bulk of the painful post burn period I was actually unconscious - kept in an induced coma due to the need for me to be on a ventilator because of my inhalation burns. At times I had some awareness of what was going on around me, but I wasn't in any huge amounts of pain thanks to modern pharmaceuticals and the fact that my burns was so deep I did not have many nerve endings left.
As my level of consciousness increased - when I was transferred from intensive care to the burns unit - I began to be very aware of the burns on my back. They did hurt. The nurses were doing a dressing one day, and I wondered why they were using steel wool on my raw tissue. They weren’t of course, it was just sterile gauze. I could not ask these sorts of questions or very easily communicate my pain because the tracheostomy I had at the time prevented me from being able to speak.
A lot of the rehabilitative physiotherapy on my shoulders and arms was very uncomfortable, but not actually intensely painful. Often I have had quite a deal of pain after reconstructive surgery, particularly at the donor sites - where they take the skin from for the new graft. The process has been described to me as similar to taking a vegetable peeler to someone’s skin, and the level of the wound remaining often includes an exposure of the nerves close to the surface. Donor sites are usually kept ‘intact’ - with all the dressings still on - for at least a week after the operation, and this minimises air contact or accidental abrasion of the donor site, which usually helps to minimise pain.
I know, I know.... all of this sounds incredibly painful. But I have usually had access to some very good pain management medication, and pain linked to surgery is time limited to a degree. It’s a bit like childbirth...you forget how bad it was at the time.
What has been much harder for me to cope with has being the musculoskeletal pain in my neck and back over the past year. The hard bands of scarring – contractures - that can form after burns and grafting have actually placed pressure on my skeleton so that there is quite a lot of wear and tear in my cervical spine(neck verterbrae). Combine this with bad posture - also linked to contractures; the heterotrophic ossification (soft tissue turning into bone, a potential complication of severe burns) that has fused my right shoulder and limited my left; the strain on my back and neck from the need to compensate for my limited arm function and resulting muscle wastage; and some previous spinal injuries from horse riding and falling down the stairs; and I start to wonder how I got away with so little pain so long!
It seems that as I started to ask more of my body as my mental health improved – like being able to stand well to sing better - I was starting to place all sorts of demands on my body that it does not seem to be able to cope with any more. Or at least not without letting me know how hard it is. In the language of my body this translates into pain.
The main areas of pain are my neck and thoracic spine (upper back), but I had a period of lower back pain earlier this year also. Since the onset of the pain, which initially only used to occur when I really tried to maintain my posture to sing for a long rehearsal, I have tried all sorts of alternative therapies, supplements, medications and sought a variety of second opinions to try and help me fix this pain.
I have not had much success with alternative therapies, except for shiatsu - but the results are not always the same, and not long-lasting. I have a wonderful, wonderful private physiotherapist. He has been seen me at no cost - as a form of sponsorship for Climb to Recovery - since sometime in July; has been very supportive, and has also managed to help me resolve the lower back pain and one area of pain in my upper back. The area in my upper back had been causing me so much pain for so long, it often felt like somebody had a white hot sword stuck in between my right shoulder blade and my actual spine. He gave me a great big bear hug a couple of times and ‘cracked’ the vertebrae there, and I haven't had much grief from that spot since.
He has also referred me onto a trainer to help with my core strength - which sorted out the lower back pain, and he laughs at my jokes!! This is a prerequisite for any long-term health professional relationship!!
Unfortunately, my neck seems to be a more difficult problem and is also very reactive to physiotherapy mobilisation treatment. It got to the stage where I would not let the physio try to mobilise the vertebrae in my neck, as I would always end up with a migraine later and severe neck pain.
When I think about it, I cannot really believe how long I have been living with these amounts of pain. If I had to give the pain score out of 10, it is often as high as seven or eight even as I try to go about my day to day activities. I have been told that I push myself too hard, and I need to accept the limitations of my body. But it took a lot of work for me to ‘create a life worth living’ - to become involved in the community in ways that gave my life purpose, social opportunities, mental stimulation and structure. I find that when I try to reduce my daily activities, my mental health begins to suffer.
I have had to make significant adjustments - otherwise my body screams louder than it is possible to ignore, and I run the risk of vomiting over my keyboard at the computer. I have also had to go on long term pain medication, which impacts upon my energy levels and everyday things like driving. I am now trying to stop myself ‘getting in there’ and lifting things, but I hate to ask for help. I always think that people will think that I'm being precious, and I hate being so limited. I have been, in the past, a woman who rides great big horses and tows horse floats on her own; goes rock climbing, downhill snow skiing, bushwalking, and four wheel driving. Even with my arm limitations, I have insisted on still driving a manual car.
I find this pain situation and the associated restrictions incredibly frustrating. There have been times I will not let a friend into my flat - one way I can save on my pain budget is to leave the washing up for days, or neglect the house work. When I have a friend or family member who is unwell, and I have to limit how much assistance I can give them... I feel mean-spirited, and ever concerned that people will see me as a malingerer. Much of the time I ignore the pain and the instructions of my pain psychologist and keep doing things. But the protestations of my body are becoming louder, and are often accompanied with fatigue, and the horrible, slimey Mr Nausea.
Other health problems have arisen in association to chronic pain, often as a side effect of pain medication. I have found I cannot risk going more than three hours without food or my blood sugar drops so dramatically I become uncoordinated, dizzy and very nauseated. I often experience fatigue, which I think is partly caused by my body having to work in ways it was not designed to in order to compensate for my restricted arm function; and partly a side-effect of the pain medication.
Having chronic pain is also very time consuming. I have well and truly been on the medical merry-go-round looking for solutions for over 12 months, and therefore spend a lot of time seeing doctors and reading trashy magazines in waiting rooms. I need to spend 30 to 45 minutes doing my physiotherapy exercises each morning, as well as attending physiotherapy and alternative health appointments. This is all in addition to the extra care of my body required as a consequence of my burns - the daily application moisturiser, stretches, looking after my eyes, speech pathology, and my chin strap pressure garment at night.
I had learnt to manage financially with my limited disability support pension income to some degree before the onset of the pain. It has not been possible now though to manage without financial assistance from my parents - a new mattress, helping me out with food, some of the expensive health supplements, assisting with medical costs. I am very fortunate to have parents that are able to assist me in this way, but I really want to be much more financially independent in the future.
How does walking to raise money for the burns unit factor into all of this?
I have been medically cleared for training, although I have been warned that running is likely to exacerbate my neck pain. Even though my dedication to my morning physio exercises has not really assisted in reducing the neck pain, I know it has greatly improved my posture and therefore my ability to speak and sing.
Exercising also helps me to eradicate my feelings of disability and vulnerability. My legs are strong and they function well, and having my physio exercises to do each morning makes it feel like I can do something constructive about the pain and my arm limitations. It is empowering, and gives me hope - even if in only small amounts - of a better physical future for myself. As we sing in the song ‘when you believe’ by Stephen Schwartz at choir:
‘Though hope is frail, it’s hard to kill.’
I also enjoy surprising trainers at gyms with how strong I actually am!!!
If I push myself aerobically, I can sometimes get a big enough release of endorphins to keep me pain free at least while I'm exercising. If I have been running though - because I'm quite fit now, it often takes running to get the endorphins going - I pay for it for days afterwards.
Earlier this year, the increasing pain and associated reduction in function was really starting to impact on my mental health. I could not face a future where pain was always a part of my life, and I considered taking my own life at times. I have had an increased number of psychiatric admissions compared to last year, due to the ongoing problems with pain.
One of the things that made me pick myself up again though was my commitment to Climb to Recovery. With the level of support I had been provided by the Tasmanian Fire Service, my physiotherapist, the other members of the working group, the director of community relations at the RHH, and so many small businesses in Hobart - I really felt I could not let them down.
So, I have learnt to delegate. I have also been able to access more assistance at home, and I am on a waiting list for even more domestic assistance hours. This will mean I can spend my ‘pain budget’ on those activities which increase my quality of life, and help me to maintain my mental health - like Climb to Recovery. Even though there has been so much work involved, it has been enormously rewarding.
Every now and then, for no apparent reason, I have a day or half day pain free. It's almost cruel... to have that taste of comfort and freedom of thought. One of the hardest things to cope with in regards to the train is a percentage of my brain that it takes up - it is really hard to concentrate on university work, or a conversation with a sponsor when you feel white hot pain and muscle spasm around your lower neck.
But if it hadn't been for the good things in my life this year – choir, my expanding network of friends, the support for climb to recovery, and University - I really don't think I could have coped with these pain issues at all. As it is, I have good days and bad days.
There is one more procedure for the pain specialist to try before I am physically consigned to the too hard basket - and denervation of my facet nerve roots. I'm going to give it a try. I so much want to have the freedom to able to drive myself longer distances, particularly if I get paid work in the future.
If that procedure is unsuccessful I am going to have two somehow accept a life with ongoing pain and its associated limitations. I'm sure there's a lesson in it for me.
And why the photo at the top of this post? My lower back will no longer let me wear heels at all, even relatively low ones. But I can still admire beautiful shoes like these...just leave the wearing of them to my younger and healthier friends!!!
