From "Covid study finds millions have long-term smell or taste problems/Researchers say about 5% of infected adults may develop long-lasting changes to sense of smell or taste" (The Guardian).
What is the "personalised treatment and long-term follow-up"? I've had a loss of the sense of smell for over a decade, and from what I understand, there is no treatment. I'd love for there to be more research to develop treatments, but if you don't have anything to help me, I don't want health-care money — and my own time — wasted on monitoring me.
The article refers to "the devastating effect that loss of smell and taste can have on quality of life and wellbeing." Don't overdramatize! It's as bad as it is but no worse. My life isn't devastated. How do you expect people with worse disabilities to keep their spirits up?
ADDED: By chance, the very next thing I read, also in The Guardian, was "I gave up hope of a cure for my chronic condition. And it’s made me happier than ever before/For 30 years, I tried to ‘fight’ it. In the end, I found relief in embracing my identity as a person with a disability" by Keith Kahn-Harris:
The mix of good days and bad days was bewildering... Yet I have never been too sick [with chronic fatigue syndrome] to function. I have never been bed-bound or unable to take care of myself. And therein lay my problem: because I was never completely incapacitated, and because of the unpredictability of my condition, there was always hope of recovery....
The hope of a recovery in the future condemned me to an austere existence in the present; pleasure endlessly deferred. There was no one moment when I decided to give up hope.... Above all, my condition became familiar to me and, to some extent at least, predictable. I began to forget what it felt like to be “normal”....
Whatever it was that did it, in my 30s and 40s I gave up hope of a cure, embraced my identity as a person with a disability – and learned how to be happy. I am not on a treadmill of trying new treatments. Maybe one day there will be a cure, or maybe not. Giving up hope has given me back the capacity for joy....
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२० टिप्पण्या:
Another opportunity to shear the sheep…
It's easy to say, but with pretty much any problem that doesn't have a quick solution, the sooner you get on with working around it, and taking advantage of what you can do, the better off you will be.
Is this just a female issue? ("Women" have a better sense of smell, pregnant women especially so.)
If you are an exec in the cafe business and involved in menu planning and development (like our daughter) it's pretty severely distressing. Fortunately, she never lost taste and smell completely and recovered fairly rapidly.
"I don't want health-care money — and my own time — wasted on monitoring me."
That's you, and it makes sense. But a lot of people like the attention and the false hope, at other people's expense. For them the treatment is the quasi-cure.
COVID study finds millions.......and I stopped reading.
I find the COVID tests unreliable. The COVID tests reminds me of customs at the Mexican airport. The customs agents ask you to press the button, and if the light turns red they search your bag.
The devastating effect is not the total loss of smell or taste, but parosmia, where long lists of food taste like sewage.
I have two teenage daughters who have suffered from Covid induced parosmia for over a year. Calling it life altering is not overdramatic. Certain foods taste like a cross between skunk/sulphur/rotting flesh. Every meal is a battle for calories. One kid has struggled to maintain her weight at a health level. It's not a minor inconvenience or picky eating. They are overwhelmed by the terrible taste and smell and struggle not to gag while eating.
Their list of sewer food includes chicken, coffee, eggs, onions, peppers, peanut butter, yogurt, sour cream, turkey, bread, beans, processed corn products, some types of pork, lunch meats, certain cheeses, ranch dressing, and certain fruits.
"But a lot of people like the attention and the false hope, at other people's expense..."
I think a lot of people on the health care provider side like the idea that there need to be regular visits for people with chronic conditions even though there is nothing that can be done. It channels the money TO them. I'd point the finger at them first, if I wanted to point the finger.
"I have two teenage daughters who have suffered from Covid induced parosmia for over a year. Calling it life altering is not overdramatic."
I agree. That problem is terrible. Anyone with just a loss of smelling should realize that it's a limited problem. I haven't smelled anything bad in years... to the point where I'd be delighted if I could smell sewage. But for your food to smell like sewage really is terrible. I'm sorry to hear about your daughters. I'll bet some tactless people sometimes comment on how easy it must be to lose weight. I've had that. I say I have a loss of smell and the FIRST thing they say is so is it easy to lose weight.
'I've had a loss of the sense of smell for over a decade...'
Insert Meade joke here...
: )
My wife had surgery to remove a brain tumor. The surgery save her life but comprised her ability to swallow. Imagine being able to smell all that wonderful food but not being able to eat it because you can’t swallow.
I'm three years past radiation/chemo treatment for throat cancer. Lost about a third of my body weight while things either smelled/tasted like death or poison. Those were the choices. In my case, I went through a total system reset (almost like that of an infant) as I relearned how to eat again. Almost exactly three years on, the ability to taste is just about back to normal.
I'm lucky this is the case. Due to mouth dryness due to a damaged salivary system I pick what I eat based on what I can swallow without too much trouble. Way up on fruits, veg, eggs and dairy while the breads and red meats are gone gone gone.
I feel for those fighting to put on calories. There are formula products that are a godsend when you are in that place. We all have to find the path that works for us, and every day is a little different from the day before.
'My wife had surgery to remove a brain tumor.'
Other than swallowing, I hope she is doing well...
"There are formula products that are a godsend when you are in that place."
My mother lived on Ensure for years after having surgery for throat cancer. I'm glad yours was treatable without the surgery. To be able to eat fruits, veg, eggs and dairy — real foods — is a lot. But also to know you can rely on Ensure if you need to is important.
I hope you're doing well. Your positive attitude is inspiring.
I picked up an infection...actually two...from my second hip replacement. They put me on three different antibiotics, one administered through an IV PICC line. All food suddenly had a metallic taste. I was on that IV treatment for months. I intentionally would eat and drink things that I loved, but all tasted terrible. Once I stopped the IV my taste returned to normal.
On the plus side, they are making some amazing discoveries about the ability to artificially stimulate the vagus nerve with an implant or even an external device, and this new technology is certainly worth looking into. There's a new colon cancer treatment that sounds like a miracle cure. You never know what's around the corner.
I hope you're doing well. Your positive attitude is inspiring.
Thanks! So far, so good. I found a product when I was at bottom that provided 500 calories of easy to absorb high-protein content in 10 ounces. It was from Kate Farms and was almost literally a life saver. I was clued in by some of the folks with esophageal cancer for this one.
I feel remarkably well, better than I really thought I would by now. I've been able to restart the herb garden and really enjoy it this year. Just made about a pint of fresh pesto. Good fresh pasta is also easy to eat. Every case is its own thing and I've been very fortunate.
The secret to a happy, lasting marriage is anosmia in the wife.
I recently had COVID - a mild case that felt like a mild cold. I’m still a bit stuffy. I work in the bakery section of our local market. Breads, rolls pastries, cookies being baked all day. People comment about the wonderful smells - today it was chocolate chip cookies. I can’t smell a thing. No idea if this will last. If it does, I’ll have to figure out what to do with my vast collection of fragrances.
"It's as bad as it is but no worse." This should be the foundation of a new philosophy of life, that I shall call "Althousianism". I'm not kidding. But if widely adopted it could end the practice of commenting on blogs.
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