When you’ve lost your sense of smell…again

Chrissi shares her experience of smell loss for the fourth time

“As many of you will know, I lost my sense of smell for the first time in 2012. It was a very severe loss, from a virus, and recovery took many years. After an initial period of no smell at all, parosmia came after about four months, and made my life miserable for two years. Things changed slowly from then on. When the pandemic came in 2020, 8 years after the initial loss, I would have described myself as “healed”.

“Recovery” is a funny word to use with smell loss, I think, because it implies that the condition is something that comes and goes like a cold. But in my case at least, damage was done to my olfactory nerves, and these come back through a process of healing. A bit like recovering from a wound, where you might expect a scar, my healing was complete, but a few things were different. This in no way affected my quality of life. If anything, I appreciated my sense of smell more than I ever had before it was lost, and it brought great joy to my life. I felt like myself.

Then the pandemic arrived and I was not spared. I’ve got autoimmune conditions, and this has put me at risk despite a full regime of vaccinations and booster(s). My first case of Covid came early on in April 2020. It erased my sense of smell by about 50%. Five months later, parosmia arrived. It was a difficult time, and like many of those in our community, I found parosmia–and still do–to be a confounding and frustrating experience. It seems to defy description, takes away appetite and saps your physical strength as well as your well being. That first Covid loss came as a terrible blow. My fragile and so carefully rebuilt sense of smell: could it possibly recover twice? As I experienced it ebb away in a matter of hours, I could feel the panic rising.

Fourteen months went by. I had my first vaccination in March of that year. In June 2021, I had a positive lateral flow test and all the classic symptoms with the exception of lung involvement. I could not have a second vaccine until November. This case of Covid reduced what was left of my sense smell. There was just barely enough to smell very strong odours close up, without being able to identify them. I continued, as always, to observe masking rules and avoiding crowded places and public transport. I continued with smell training, and was constantly looking for smell in everything I did during the day. Cooking, washing my hands, stepping outside in the rain. What do I smell here? 

In October 2021 I was devastated again to find that I had a series of positive lateral flow tests and a positive PCR. By this time, I was an official guinea pig of the Office of National Statistics, which meant twice monthly interviews and frequent PCRs to monitor my health, as well as antibody tests. This third case of Covid, which came well before the arrival of Omicron, was the worst of the three. I experienced lung involvement as well as the other classic symptoms. My sense of smell was wiped clean–there was nothing left

At 62, I am in an age bracket where we expect the sense of smell to diminish. Smell starts to go as we age, in the same way that we need reading glasses or hearing aids. So on that day in October, restricted to my own four walls for ten days as the guidelines required,  I considered my position: probably a life without smell. How could there possibly be anything left? After four separate losses, and each new blow taking away more of what there was, total loss seemed assured. This was a very difficult time for me. 

Then in January 2022, things started to change. There has been marked improvement. Unlike many, I’ve been spared the fluctuations that come during recovery. My sense of smell seems constant. And I haven’t had a recurrence of parosmia–yet. I continue to smell train, and take enormous pleasure in every little smell I encounter each day. 

So many people have asked the question on our patient forums: what happens if you get Covid twice? No one can say for sure. But here is one case of smell loss, four times, and I’m still making my way back to smell.”

Chrissi continues to smell train to maintain the best possible experience of smell.  Find out more about Smell Training here.

February 23, 2022

Posted in Self care.