Jeanette's story

Jeanette shares her tips on living with parosmia and how setting up the AbScent Book Club has supported her recovery.

Jeanette's story

Jeanette says celebrating any wins - finding a new 'safe food' or enjoying a meal out with friends - has helped her manage her parosmia over time.

I lost my sense of smell after a Covid infection in March 2020. However, my anosmia at that point was secondary to some of my more severe symptoms. I went on to develop parosmia and as my other Covid symptoms reduced, the acuteness of my smell disorder increased.

I returned to work on a part-time basis, which was really difficult. I couldn’t go to the staff room or the canteen. People eating at their desk was unbearable, so I preferred to drive home each lunchtime. I cried for a week. It was hard for people to understand as they thought I was getting better as my other symptoms had lessened. Parosmia is the ‘unseen’.

Eating with parosmia

Focus on your ‘safe foods’. Raw fennel, raw carrots and prawns remained palatable throughout. I was really concerned in the beginning about how many meals I was wasting. So I began to make meals that consisted of my safe foods and then adding just one small piece of protein like a frozen fish finger. That way, if I found it disgusting, I didn’t feel like I was wasting too much.

When you find your safe foods, try to experiment. When I realised I could eat cream cheese, I made pasta sauce out of it too. So you feel like you’re giving your body something different. I put a list of my safe foods on my fridge so that when I am particularly tired and don't want to think about cooking, I can look at the list and quickly decide what I can make for my evening meal. For me, eating cold foods is definitely better than eating hot and my preferred method of cooking, when I do, is to grill.

I previously would have never used replacement shakes. But I had to find a way past my Long Covid fatigue and at one point early on I wasn’t eating well enough to fight it. I found a brand of shake whose vanilla flavour was palatable for me, which led me to enjoying other vanilla products; eventually I moved onto really enjoying coconut. I think having the shakes really helped me start to socialise again, because I knew if I couldn’t eat much when I went out, I could at least enjoy a shake when I got home. I only relied on drinking shakes for three months but they really got me through. I could also add frozen fruit to shakes so I was able to get some added nutrition.

It’s been a difficult journey; two years on and there are still things I absolutely cannot eat, such as garlic and onions. Some of the safe foods that have returned still don’t taste the same but I am grateful that they don’t taste ‘parosmic’.

Experiment (although you have to be mentally ready for this). At first, I could only try a tiny nail-sized portion of a food item; two years on and I can try bigger pieces of ‘new’ foods. An interesting example for me was a jar of olives in brine that tasted awful, but when I drained the jar and left it in the fridge without a lid on, the olives were fine! I can eat parma ham if the wrapper is left off and it has become more cured.

Changing my mind set

When I feel safe, happy and loved, I honestly believe I have a breakthrough. When my parosmia was at its worst, my youngest daughter was away at university and when she came to visit, she made me a meal with my ‘safe foods’. I could eat it! Each time she visits, she makes me a meal and it is always more palatable.

As I began to go out socially, I just focused on the importance of being with friends and not on thinking about the foods I had to choose. It wasn’t an easy process but I focused on changing my mindset. When we went away, I focused on enjoying experiences such as cold water swimming, rather than eating out.I am lucky that my support group celebrates my ‘win’s and I try not to focus on the loss. It really helps to celebrate the good things.

Other tips on living with parosmia

  • Be a smell detective - establish what your triggers are and avoid them.
  • Use your other senses when you are eating.
  • If you can find a friend or family member to shop for you, allow them to. In the early days of my parosmia, I became very stressed at going into a supermarket and so a friend started shopping for me.
  • Find out physically what’s happening to you so you can understand it. I was fortunate that I found AbScent really early in my journey. Their webinars rescued me as I started to discover exactly what was happening to me and that my depression was real.
  • Document your progress - whether it’s through a journal or starting an Instagram account of your experience. This will help you see your progress particularly when your mood dips.
  • As soon as you lose your smell and taste, start smell training. For me, this has been a holistic experience: I did make a smell training kit but I also focused on smells that brought an emotional connection and herbs that I cooked with regularly.

The connections I have made in the AbScent Network and setting up the AbScent Book Club have certainly been instrumental in getting to a better place with my parosmia. The Book Club is a space for us to converse about words, experiences, memories. The books are not necessarily smell-related.

Find out more about The AbScent Book Club.