When Berna Cox caught a flu-like virus, it had serious and unpredictable results. With little conventional help at hand she turned to the internet
I have never met my new best friends and probably never will. In some instances, I don't even know their proper names and have only a vague idea of which continent they live on.
But, at the moment, they are as important a bunch of people as any other in my life. Indeed, I am much more diligent about keeping in touch with them than I am with friends of longer standing.
My new best friends are cyber buddies. I have joined a Usenet group on the internet.
And that is a sentence I thought I'd never utter. For more than a decade, I have held the view that the internet, although undeniably a wonderful resource, is an unpoliced medium for every crank and misfit to parade their weirdness and I have studiously steered clear of signing up for anything, entering chat rooms or giving personal information of any description online.
I never open e-mails from dubious addresses and I keep my anti-virus and anti-spam software scrupulously up to date.
But late last year, I broke my own rules. Late one night in a state of frustration and desperation, I found a Yahoo health group on the internet and I joined. It's a group for people who are living, like me, with an impaired sense of smell and it has proved to be a most worthwhile source of information, discussion, empathy and support.
There are thousands of Usenet groups for just about every topic under the sun and, in fairness to my previously held point of view, many of them are totally weird and wacky. But tarring them all with the crazy brush is unfair because there are some really genuine and useful ones out there and the information and support they offer can be most beneficial.
All my group members suffer from various disorders of the sense of smell - Dysosmia - and we all have similar woes to compare.
My particular disorder is called Cacosmia which means my sense of smell is seriously out of whack. I have only one "smell" and that's a bad one. I register a bad smell if the odour is particularly strong or if there's a high chemical content. One smell, though, fits all.
Perfume smells the same as diesel and the smell is neither one nor the other. It's just a really unusual, offensive smell. Most food, particularly if it's hot, is, for me, inedible. Although my sense of taste is technically undamaged, the inextricable link between smell and taste means that most food tastes vile.
If it smells bad to me, it tastes ditto.
Several ears, nose and throat consultations yielded the same diagnosis - a bad flu-type virus last year damaged my olfactory nerves. There is no fix and no cure for the condition.
The only good news from the medical diagnoses was that my case is viral - the other causes of the condition are tumours and head trauma. I'm grateful that I don't have the added concerns the other causes bring, but sometimes it's difficult to appreciate that. It's cold comfort.
Obviously, the whole business of cooking and eating is extremely difficult.
Some foods are more offensive than others but there's no real pattern. All meat offends me but I can sometimes eat fish. but only if it's cold. Citrus fruit is dreadful but so too is melon. Grapes are fine because they register nothing at all.
Onions and garlic are particularly bad but peppers are all right. Anything fried in oil or containing oil - even extra virgin olive oil - is inedible for me but I can eat butter. The cruel thing is that sweet things are about the only thing I get any vestige of a normal taste from but I have to steer clear of them from a weight point of view.
Similarly, eggs (not fried) are good but when I found myself eating omelettes every day, I had to try to cut back. Cold food, generally, is easier than hot food but I miss hot meals.
It isn't, though, just the food issue. The sense of smell is an undervalued component in the general quality of life. I can't smell fresh laundry, new babies, country air, the ocean, fresh coffee, flowers.
I can't smell the things that trigger good memories or give a sense of anticipation. I can't smell my perfume or my husband's after shave and have had to totally change my favourite cosmetics and hygiene products. Anything in an aerosol is particularly bad so I've had months of trial and error finding things that don't offend me. It is really quite a miserable condition. And it's potentially dangerous in that I can't smell smoke (I was told to make sure my smoke alarms are in good working order at all times) and I can't smell spoiled food.
And it's lonely. Friends and family are sympathetic and supportive but really, nobody wants to be a moaning Minnie all the time. It was during a bout of late-night self-pity that I found the group on the internet.
It is a lifeline. Similarly afflicted people from all over the world post messages to the group and it is a wonderful source of hard information.
There is a doctor in the US who offers surgery as a possible cure. All those who have had it have been frank and honest in their post-operative recommendations. Others have tried various products and again, they report honestly as to their efficacy. Symptoms are compared and hints and tips are exchanged. Many have exactly the same intolerances as I do.
The members' stories are generally carbon copies of my own - their disorders are virus-related. If anyone finds a particular product or has a medical experience to report, they're quick to post a message to the group and keep all members in the loop.
There is absolutely no requirement to give any more information than you want to and, in the few months of my membership, I haven't come across anything inappropriate or creepy. Some Usenet groups are moderated which means the content of the messages is viewed by an interested party who screens it before posting to the general group.
(Moderation is intended to keep the content appropriate - not to censor opinion.)
Apart from the tips and hints and news of possible medical advances and treatments, the true value of the group for me is the empathy. Just to know that somebody, somewhere really understands diminishes the feeling of isolation and it really does help to keep my spirits up.
When I'm sitting in a restaurant fighting against the smell and trying not to offend anyone by not eating, I think of my cyber buddies and console myself that I'm not totally alone. It is a cyber group hug.
I never thought I'd ever say it, but the weird and wacky internet can actually be good for your health.