Sickness was something I had never really thought about, even though I had suffered various neurological symptoms since from a young age. They were however, not things anyone could see, and were not diagnosed or considered real until my mid 40’s (e.g. headaches, pins and needles in my legs and arms, dizziness and occasional fainting). Regardless of these symptoms, I had been a happy and reasonably carefree kid, enjoying life as I knew it, and barely thinking about my health until I fell from my horse Trixie and hurt my neck. Following this event, my symptoms did become worse, and so they were all accepted as real for a time at least. They progressed as I was getting older, but mostly, doctors told me I was a hypochondriac, an over achiever, or that I must be stressed about something, and to get on with my life. Oh, and significantly, there was nothing wrong with me! I sought the help of physiotherapists and chiropractors, who could see the side effects of my symptoms; I saw naturopaths, started Transcendental Meditation, and took supplements and herbal remedies from as far back as 1979. Most people thought I was an airhead (or weird!), but I needed ways to cope with the increasing symptoms. The supplements I was rattling with all those years ago are quite the thing these days, so I like to think I was well ahead of my time! Anyway, in about 1997 or 1998 the pins and needles started in my face. The general practitioner initially took this fairly seriously, and a CT scan was ordered to check for a tumour. Apart from deterioration of my 5/6 cervical vertebrae and the suggestion to have physiotherapy, there was no further investigation. In 2004, my symptoms were becoming visible to others… and a new chiropractor thought perhaps I had Multiple Sclerosis. I went to a new gp, who after some simple neurological testing – at my insistence – decided I did in fact need to see a neurologist. As chronic illness like MS is not considered urgent, it took about five months to get an appointment. I was dressed in corporate business clothes and wearing make up the first time I saw the neurologist, who quipped when we met, gosh, you don’t look like you need to be here! I suggested curtly that after he read my referral letter, I would like to be thoroughly investigated. An hour and a half later, he said, yes there does seem to be something going on, and booked me in for my first brain MRI, but also said he didn’t expect to find anything as I looked so well, so he would see me in six weeks for a follow-up appointment. I went away with little hope, and no expectation of ever getting a diagnosis, or ever being taken seriously. For a couple of years prior to this appointment, I had decided I must have had some bizarre mental illness causing me to imagine the life long symptoms. The next morning at 7am I had my brain MRI. No real dramas there, provided you don’t have claustrophobia as they shut your head into a cage, stuffed with bits of foam to make sure it can’t move, then slide you into the inner barrels of an enormous machine, with earplugs and a patient bell in case you need assistance. Easy… the earplugs don’t shut out the noise, the lack of space inside the machine is incredibly claustrophobic, and it lasted for about 45 minutes. I’ve had so many now they don’t bother me, but they are definitely not on my list of fun things to do. I did not wait for the film, as was told to expect no findings. However, the next day, I received a call from the neurologist’s secretary to say the specialist needed to see me urgently. No idea what they had found, but obviously they had found something. Was it a brain tumour, or was it some other awful thing? Two days and two nights of fear, stress, worry; thoughts that would not go away, sending us all into a spin. How easy for them to make a call and say the dr needs to see me urgently (well, in 2 days time!!), rather than in six weeks. So you see, it is easy to be disenchanted with the medical profession, and that was merely the diagnosis of a brain malformation, one I had been born with, requiring moderately urgent brain surgery!
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Hey Kate, Patsy has taken to sending over newspaper clippings to us from the Advertiser. The latest one was the article about you! You’re a regular media star these days =) xxxx
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If you are sick, you are sick. The effects of that will become evident eventually, whether or not others “believe” whatever it is that needs to be believed.
What is the importance of a “diagnosis”?
1. If there is something that can be treated early to improve life span or quality, it needs to be found if possible
2. Sometimes it helps to know the natural history of a disease so that you can prepare and plan.
3. If the effects of the disease change behaviour, it means others around you can lovingly make allowances for that.
Sometimes a “diagnosis” is a bad thing. For example,
4. it may stop you getting life or travel insurance.
5. It may affect the way others look at you
6. It may affect the way you look at yourself
7. it may cause your offspring anxiety about their own future
Medicine is a very imperfect science. It hardly ever actually cures anything. Mostly, it controls outcomes through drugs, surgery, or modifying behaviour (this last one is the hardest).
Doctors can only treat things that they find. Not all things are discoverable.
People come in all shapes sizes and sensitivities. Many people call some things a “symptom” that others would ignore. Some people ignore really major symptoms!
Many things have no effective treatments, so the value of the diagnosis is limited, and in fact may be more negative to the sufferer than positive (see the above list)
I want to tell you a true story:
Someone close to me had a great aunt. She was married at 21, and went to live in her husbands country with him. A year later, he died. She returned to her own country, and told everyone she was very ill
.
She went to the doctor and had numerous tests, and nothing was found. Her family looked after her.
This continued for years. She told everyone she had something terribly wrong. She went to many doctors, regularly. No tests ever showed anything.
Younger relatives were sent to visit her, the family looked after her.
Eventually she went to a “home” where the nuns looked after her. The family visited every week. Family from overseas came to visit her. The youngest relatives went to visit her as penance by now. She continued to be convinced she was on death’s door.
Her 100th birthday arrived. There was a letter from the queen. A big party was thrown. All of her relatives and friends attended (those that were still alive, at least). There was huge cake with lots of candles (maybe even 100?) She wasn’t very happy because the doctors still hadn’t found what was wrong with her.
The candles on the cake were lit and Aunty blew them out – and collapsed.
She was rushed to hospital, and died the following day.
If you are sick, you are sick. The effects of that will become evident eventually, whether or not others “believe” whatever it is that needs to be believed.
I refer you to Spike Milligan’s epitaph (actually, they weren’t allowed to use it, shame):
“I told you I was ill”
🙂
with love
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I remember this as we met shortly before this and you never gave any indication of the urgency,you just said I’m going into hospital to have a brain tumor removed tomorrow. Many other significant events in your life you have told me frankly, openly and without fear of my reaction. I hope I only ever gave you support. I always and still do admire how you have coped with all these things in your life. Keep going I know you are loved and fully supported in a wonderful partner and family + lots of your friends
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A quick update, that time it was a cranial decompression for the Chiari Malformation, not a tumour, but traumatic just the same! And you were, and are, supportive xoxoxo
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That’s right, all I heard was “brain tumor” “operation tomorrow”. 🙂 then we drank coffee
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Every time I read your blog you remind me of lots of stuff we have been through. Things that sometimes I would rather forget as denial is often a brief respite to the dementia train. But on a positive note we are together, so as the trip continues I know that I share it with an interesting compassionate human being who loves me as much as I love her. So all aboard, for what ever we see around the next bend in the track.
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