There is apparently very little about my health that is
normal compared to the average person, But hey I never claimed to be normal!
On Monday I was admitted to hospital with new and
unexplained numbness in my right arm, leg and face.
I went through my local A&E so obviously I saw a number
of health professionals from the receptionist, the nurse who triaged me, the
nurses to ran my tests and fitted my cannula and the A&E nurse practitioner
who spent over an hour taking a thorough history and doing all the examinations
to get to the bottom of my symptoms.
Each of these individuals endeavoured to understand as much
about chronic cluster headaches and more specifically MY experience of MY
cluster headaches.
I can’t praise them enough, both the A&E staff and the
ward staff were amazing. These are some of my favourite examples of their high
standards of care.
“You truly are an expert patient… thankyou” (the nurse practitioner in A&E)
I know now what my ‘normal’ pulse, BP, temperature etc. are.
They are not ‘normal’ but to me at least I can identify what is abnormal for
me. I know how to describe the ‘normal abnormalities’ on my ECG and I know what
my lithium levels normally are.
I take an interest, I ask the right questions of the health
professionals around me, I remember what I can and I write a lot of stuff down.
I take pride in understanding my body and my illness. This helps when I see
that look of panic on a nurses face when they see a pulse rate of 41 when
taking my obs, I can quickly explain that while that is quite concerning it’s
also very normal for me.
“So you have had chronic cluster headaches for the last
eight years with very little respite… that must have been hell. You are doing
well to still be smiling” (on call neurologist who examined me)
I never ever find this patronising. I love it when people
say things like this, especially medically trained people. It validates my
experience. Yes it has been hell, from the bottom of my heart, THANK YOU for
acknowledging it.
“And you take lithium for…?” (everyone who took my
medical history!)
If you looked at my medication list with no knowledge of my
diagnoses you would forgiven for assuming I was diagnosed with diabetes, bi polar
disorder, heart disease, Parkinson’s,
epilepsy and possibly others. I have none of these. But it can take some explaining!
I carry a list of my medications listed under my diagnoses. I would recommend this
to any cluster headache sufferer!
“I’m going to talk to a neurologist as to be honest I’ve
never heard of any of your neurological conditions” (A&E nurse
practitioner)
THANK YOU! HONESTY! Don’t pretend to understand when you don’t.
If you don’t know, ask me, ask an expert but don’t make it up as you go along.
I have the greatest respect for doctors who are willing to say ‘I don’t know’.
Even my consultant who is an expert in Cluster headaches and and expert in my
experience of Cluster headaches occasionally says ‘I don’t know’…. Ok he says it quite a lot but
I am quite confusing!
I think myself very lucky for this hospital visit.
I count my GP and Consultant blessing everyday!
I am the expert in my own experience of Cluster headaches.
All I want is for the medical professionals that I meet to take their medical
training and apply it to my case… I don’t and probably wont ever fit into a
box.
I am a complex patient … but we all are … We are all human
beings…that makes it complex.
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