The Itch Behind the Bite – An Unhappy Nervous System.

My overall recovery and the health professionals that I have seen have been somewhat like an arcade pinball machine. I am bounced from one to another and every so often I reach a goal, the lights flash and a mini celebration begins. However, more often than not I hit the ‘bad guy’ that makes you lose points and start again. It is from these ‘loses’ that we learn and start to understand more about the game of recovery.

12 months have now passed and each week I am learning more about a complex machine we all have, yet know so little about – the nervous system. Being an engineer, I like to have a solution to a question. When a machine breaks down, I like to find the cause of it and simply repair it. Hence, the idea of a shotgun approach to recovery and the comment ‘it will take time’ can leave me somewhat frustrated – especially when the machine is with me everywhere I go. I however, have learnt a lot from the process, the medical staff that I have worked with, the research papers I have read and the daily appointments I attend. I want to put it all in a different perspective. Sometimes we simply won’t find the answer, but we can indirectly influence the machine to start giving it the fuel it needs.

Rest- The perfect excuse for a Rarotongan holiday!

Despite having dealt with the beast of Plasmodium Falciparum Malaria that has a known effect on pathology and is a worldwide issue with a medicated treatment, we tend to lose sight and understanding of the problem when we experience an issue outside of the ‘norm’. It is not common to see mosquito borne diseases in the NZ health system. I have been told by many people that I am a complex puzzle of which they cannot put the pieces together. The machine is simply too complex for us to pin point the exact issue and formulate a recovery. In non-medical terms – my nervous system is unhappy and as a result it isn’t participating in the functions I took for granted previously.

Chronic pain, fatigue etc are syndromes that effect many people and are not understood by a large majority of the population. The mechanism that contributes to chronic syndromes can all be different, for example – anaemia, post viral (from many forms of illnesses including malaria, glandular fever etc) and even psychological stress. The day to day impacts on an individual can vary significantly based on your activity, stress, and environment. My GP tells me it is just a label that we shouldn’t live by, but to me it is much more than that.

Pikinini in the Solomon Islands – A fresh outlook on recovery!

A physio that I work with, explained my situation quite nicely;

• My system was hit with a large event (Malaria), which has had wide spread impact on the body. Malaria is a blood borne disease, and as a result it is throughout the body. The ‘non blood cells’ have also been effected due to their dependence on blood. As the initial attack on the body was wide spread, there was no way that the brain could determine where the event began
• As a result of the attack the brain has a number of strategies to deploy. This includes neurological, pathological, immunological the list goes on. The body can alter behaviour to try to restore the energy it needs to get the body back to its known ‘normal’.
• The strategies it can deploy become persistent once the body has experienced a number of events. The reaction of survival can become the nervous systems new normal. These mechanisms are the systems short term fix, which can be different to the long term requirements. Strength, endurance and coordination can be affected as a defence mechanism of the body. The body’s baseline stored energy is significantly reduced.

The scenario is similar for many post viral chronic syndromes and the reason why everyone’s response is so different. Your system responds to the type of, the intensity of and location of the attack. The brain then deploys what it can and what it thinks is best to fight the attack.

For me, my systems response to the attack means on a day to day basis I experience a weakness particularly to my hands and lower limbs resulting in a limp, muscle spasms, shaking and cogwheeling of muscles, poor balance, fatigue and cramps etc.

So, how do we treat it? Well, there is no one stop shop but the following can be beneficial;

• Graded exercise – The nervous system has adopted a new normal. It can unconsciously decide when there is a potentially dangerous movement to the body. We need to trick the nervous system and train it to experience a new ‘norm’. Each day we do more and more and slowly build to what we need.
• Pace yourself – There is a fine balance between too much and too little. Overdo it and the body can take weeks to recover. Do too little it doesn’t take long to slip backwards. The recovery has to be managed with a fine tooth comb. It’s a long process and can change significantly day to day. If you do too much on your good days, you will have more bad days.
• Breathing – It is important that the body is relaxed and getting the oxygen it needs, this is a good place to start!
• Cognitive Behaviour Therapy – You need to be in the right head space to control the recovery. This is where support networks, friends and family become invaluable to people.

Chronic syndromes and recovery from an illness become just as much of a mental game as it is physical. It’s easy to lose sight of the finish line and give up when you don’t see progress for months on end. It can all become incredibly frustrating. Significant changes need to be made to your lifestyle – for me this has included work, the outdoors/exercise and socially. I have had to start recording, tracking and graphing my days in great detail- work, steps/activity, sleep, appointments etc.

Rehab using vibration training at Chill Space

I started with just 1 minute a day on a wind trainer and have been working daily with physio and vibration training to get the body back to normal. I still struggle to complete the exercises I started on in December and work on most days, but I can do an extra rep and don’t require the level of assistance I did previously. It’s all progress no matter how small or insignificant it may seem to others.

My reasoning for writing this – Don’t label chronic illnesses. People may not show a physical injury, but the nervous system can be debilitating and it takes a long time to get it the fuel it needs. Time and support is the key.

It’s a race of the tortoise and the hare. I’m still a slow tortoise but that hare better watch its back.