I am writing to raise awareness of a project I discovered on www.encephalitis.info titled The AFTER EFFECTS AND SOCIAL CONSEQUENCES OF ENCEPHALITIS. In particular my interest was raised due to the fact that they had focussed on post-encephalitic chronic pain states and the prevalence of chronic pain following traumatic brain injury. In relation to encephalitis both chronic pain and central pain is reported.
This year in March marks 7 years since my life changed over night. My physical and mental abilities have had an impact not only on me but on my family. It’s a shadow that we have to learn to live with as my disability is classed as permanent. I no longer work, drive or am able to participate in the active life I so enjoyed. Clinical diagnosis was encephalitis after chaos which is a story for another time.
My chronic pain is difficult to articulate because it is always there, and you almost accept it. I experience headaches, sharp needle pricks, pins and needles on my right side, back pain, muscle spasms and so it goes on. My husband encouraged me to go for help specifically regarding this. My GP referred me to a neurologist who felt this had nothing to do with my encephalitis of 7 years ago.... okay!! However she did ask the question “Are you depressed “!!! I was asked where the pain is; well it isn’t a one word answer, a bit of help in articulating my pain would have helped. I must add that to be depressed would also be perfectly understandable as there is a link: depression can increase pain and visa versa. However, surely dealing with the pain would be logical. To cut another long story short basically the neurologist suggested a number of very expensive tests, complete reassessment in order to effectively deny the link with encephalitis and possibly have to expand the diagnosis to include chronc pain.
My GP recommended prioritising the recommended tests in order to reduce costs. I went to his neurologist colleague who recommended I see a psychiatrist first, suggesting a "conversion disorder". However, I refused. So here I sit 6 months later no further forward, and yes, my husband continues to have disturbed nighst due to my pain, and I continue to suffer. Now that’s service for you! Winter is a particularly difficult time for me with regards to pain increasing with the cold.
My question would be how do we move forward? As clients we need to find a way to articulate our chronic pain and to find professionals that can take the time to listen.
I hope that someone in Australia may be able to add to this, I was extremely surprised when I came across the project at www.encephalitis.info and felt some relief that chronic pain following encephalitis is actually recognised. I intend to share this with my GP and other professionals. I also hope that I may find a doctor who is familiar with this area and who can relieve my pain in some way.
I have added a poem to my article, as I continue to try and cope with my day. Honestly I do attempt to hide my discomfort because I see the pain and their sense of helplessness on the faces of the ones I love. Well I guess my poem is what I try to do to alleviate their pain.
Most of the time
The faces, the faces when things are not well.oh…..
I can not bare its pain or sit and dwell.
The words that I speak wave positive swells.
I wake up, slap up the day.
To try making myself perfect and chasing the pity faces away!!
I stand strong when I can despite stick in the hand.
What do I dream of, how was my day.
Mostly assumed no different, so why bother asking anyway.
I WOULD only say swell!!
I listen, I chat of everyone’s race.
With work, hardships and challenges they face.
Me, well it’s simple – watch the days grace…... I have no race.