An Unexpected Event
17th February 2020
The day had finally come, my husband Garry, son-in-law Jordan and I were excitedly sitting in the university SA hall waiting to see our daughter Kate receive her degree in occupational therapy. Speeches were made about how these young people had worked so hard and they were now to go out in the world and share their passion and knowledge. I knew Kate was full of passion to help others, especially children with disabilities. She had just secured a job in this area and was all ready to go.
Friday after the graduation Kate excitedly set off to attend a conference with her new work-mates but unfortunately she didn’t get there. On the way to the tram stop she was hit by a cyclist and we were rung to assist her. When we arrived she was on the ground in pain and had obviously injured her elbow. Later in the day a trip to hospital revealed a bad break that needed surgery. This was a bit of a shock but Kate doesn’t do anything in half measures. We knew that the next 8 weeks would be busy but things could have been worse.
Three weeks later Kate’s arm was progressing very slowly and a doctor’s visit suggested she see a physiotherapist. Over the next three weeks her arm and hand deteriorated with increased pain, reduced movement and the hand was a bluish colour. This was very concerning and at the six week orthopaedic check-up the specialist confirmed Kate had a rare condition called Complex Regional Pain Syndrome (CRPS).
Thus started a new journey into unknown and what felt like unchartered territories as we grappled with this evil condition. The condition occurs as a result of the neurons in your brain over-reacting and sending constant messages to the injured area. As a result any touching of the area no matter how gentle can feel like a ten on the pain chart and your temperature, movement and circulation is affected. The prognosis is unknown and treatment only assists with the pain management. Healing doesn’t occur until the affected neurons switch off and return to sending normal messages. How long does this take? No-one knows and to make it worse the pain process can suddenly jump to another area causing the same symptoms to occur there.
Thankfully unlike some others who suffer this condition Kate was diagnosed early. This meant she could start specialised rehabilitation straight away and did not have to endure the thoughts that she was exaggerating the pain. Many people with CRPS aren’t diagnosed until much later in their journey and they start to feel they are just making it up or the level of pain is all in their head! Of course these thoughts often increase anxiety, frustration, self-doubts and depression for the sufferer. The other difficulty was trying to get your own understanding of what was happening clear in your head but then trying to explain it to others was very complicated.
The initial period of coming to terms was the hardest part of the journey. Everything compounded on top of each other as Kate tried to move forward each day .Her pain levels were extreme and doing simple tasks with one hand was very challenging. Kate’s sleep was greatly impacted and then to assist the pain she was placed on high doses of pain relief. These only offered minimal relief with the side effects affecting her alertness and dulling cognitive abilities. A further complication was that some movement needed to be done but how do you do this when it causes so much pain and with CRPS you need to be careful as increased pain can cause greater trauma. Fortunately lignocaine patches placed on her elbow during the day gave some relief so she could exercise a little.
Thankfully we found an excellent doctor who was able to steer us through this time. He really understood the condition and the effects it was having on Kate. He spent time affirming her and allowing her to ask about medication and concerns that she had. Kate also saw a hand specialist who knew about CRPS and how to help with the rehabilitation. These 2 health professionals were imperative to Kate’s journey and especially helpful in assisting her with what to expect and talking over the options. However as it is a rare condition many are not so fortunate and are left in the dark suffering chronic pain and with long periods of time of no treatment or support.
Kate also attended the pain clinic and had some procedures done to assist with the pain but found little relief and adverse side effects .She was facing a viscous circle as it appeared the only way forward was to reduce the pain. Whilst the lignocaine patches helped a little during the day it did not assist her at night or enough to move forwards successfully with her rehabilitation .By now she was extremely sleep deprived and suffering side effects from the medication that affected her ability to think clearly. Some days I looked at my daughter and couldn’t believe how this had affected her in so many ways. She was always a bright vibrant girl but now she was dazed and withdrawn.
I had been a nurse/support worker for many years so some of my skills really helped but nothing can prepare you when it’s your daughter. We all accepted that the sun shines on the good and the bad so we didn’t have that overwhelming sense of why me and why my daughter. Working in disabilities you know it can happen to anyone. Even so I was overwhelmed with the intenseness and extra complexities that came along. I had always enjoyed problem solving but now it was full on as one thing after another came along. It seemed to creep into every aspect of life including physically, mentally, emotionally, relationally and financially.
Physically my daughter had an arm and hand that was useless and causing constant pain. Simple things like showering had to be thought through to maintain independence. Initially either Jordan assisted with showering in the evenings or I went round during the day. We then purchased something to do up her bras but there was still the problem of washing her much loved long hair eventually Kate decided it was best to have it cut shorter.
Emotionally whilst Kate tried hard to stay positive the journey was very arduous and it appeared little could go right. Orthopaedic checks were done and on one occasion Kate explained to the orthopaedic intern that as he moved her arm it was very painful but he persisted until Kate was almost in tears. This resulted in increased pain over the next few days and then we noticed the wires in her elbow had shifted. So we had a trip to emergency where they arranged for her to be on a 3 to 4 months waiting list to remove the wires. A long wait that put her rehabilitation well behind schedule as again the pain reduced how much exercise she could do and moving forwards to improvement was put on hold.
Relationally Kate often was tired, vague and withdrawn. Her study mates and other friends all had jobs and were out doing what young people do. Kate’s life was reduced to daily care rehabilitation exercises and appointments. Kate rarely saw others, her pain tiredness and financial restraints made it difficult for her to do much. Financially they only had 1 income and seeing the hand therapist and medication and other expenses all added up to the point where they needed some help from us to continue. Also whilst Jordan could take carer’s leave there was too many on-going appointments for him to do. Fortunately for Kate we were able to assist but were often left wondering about those with little support. How do they get on and manage and what issues would arise for them?
For us we just wanted our daughter to be in less pain and eventually return to the life that she and Jordan had worked hard for. Going out for small outings with their beloved dogs and family visits was all they could afford or manage to do. Having a hug needed to be carefully managed to avoid any contact with the left arm and, as she was unable to tolerate anything long sleeved, the winter was very long and difficult. We tried to stay positive and not look too far ahead but would our daughter ever be able to use her skills and passion to be an OT. What a loss for her but also for our society as there is a great need for passionate people in the disability area.
Fortunately after several extra assessments arranged by the doctor Kate’s surgery to remove the rods was bought forward. We were very happy as we realized this was her only chance of moving out of the limbo situation. There was however a high risk that it could worsen the CRPS. The team at Flinders and the pain clinic worked together to reduce the risk and the operation went well.
Anxiously we waited for the healing from the operation to settle and over the next few months were ecstatic that the elbow was improving. Kate was seeing the hand therapist regularly and her fingers started to move and she was able to tolerate slight touch on her elbow. One-day she rang very excited “mum I have just fed myself using a knife and fork” other small achievements followed as slowly her arm and hand became stronger.
Kate’s next challenge was to reduce her pain medication and as she did this her mind became clearer and she felt more confident. Over a period of time she was able to function without them and to try her hand at driving and build up some stamina. At the second visit to the pain clinic after the operation the doctor was astounded and said it appeared the CRPS response had switched off. We were incredibly thankful and relieved.
Kate’s rehabilitation to her elbow continued and strengthened and she had more energy and confidence. One year after the accident Kate started working part-time as an OT and is increasing her work load. As we look back on the year we are truly grateful for how it turned out for Kate but think of others who have this condition for many years and sometimes the rest of their lives. The impact it must have on their life and the life of those around them would be massive and a daily struggle. Thankfully they are planning some increased funding and training for doctors to help diagnose, understand and manage this and other pain conditions. Certainly a team approach and lots of support from family, friends and the community is a huge benefit. Above all we need to be there for people living in chronic pain and to encourage and affirm them as we never know when we too may need this support.