In the early Spring of 2019 I ‘caught’ Covid-19 and by 2022 my symptoms put me in the ‘Long Covid – unexplained’ box at my local health centre . Since then I have been on a long journey back to health.
My experience of ‘Long Covid’ became the catalyst for creating the Make Selfcare Simple blog because simple self-care gave me the strength to get through each day.
This is my ‘Long covid’ story, it’s messy, I make mistakes, wrong choices, but also have breakthroughs, gain insights and slowly find answers for myself.
My story includes Long-covid, Chronic fatigue, SIBO/IBS, MCAS/Histamine/Allergy, Asthma, Skin issues and lots of ‘perfect test’ results that don’t help at all.
Honestly I am not sure how helpful sharing my story is, maybe reading my story will let you know you are not alone on your journey?
This is longer than I expected!
Why did I get Long-Covid?
I qualified (Master Herbalist & Natural Healer) way back in my early 30’s and went on to improve my well-being (I’d been poorly all of my 20’s) consistently for over 25 years until my mid-fifties.
So how come I was left with Long-Covid?
The answer is simple – Stress. I went though a difficult divorce and then my teenage daughter became very poorly (umpteen hospital appointments)for the next 5 years, I lost my dad suddenly, a new business venture had the plug-pulled and we moved home 7 times in 5 years.
I remember feeling this crushing responsibility.
Long-term Stress switches off your repair and maintenance systems.
My Long-covid Symptoms
I was quite poorly with long-covid, typical flu, breathing issues, and gastric flu symptoms all at once. But it passed and was over within a week.
But from that week my health has never been ‘right’.
Including 15 months of recurrent episodes of debilitating gastric flu and chest infections.
Gradually I started to have increasing random symptoms:
- IBS – various and changing
- Itchy ears – ezema inside my ear
- Increasing Sinus infections
- Asthma that started and finished very quickly
- Weird skin rashes, from painful acne to rashes on my skin and inside my mouth and throat
- Increasing joint pain, weakness and swelling
- Hair loss one side of my head
- Sinus swelling behind my right eye (extremely painful)
- Feeling dizzy light headed in the head but my legs felt like lead
- Low Blood Pressure
- Fuzzy head and poor memory
- Extreme Fatigue
Unfortunately this was during Covid. I still had to work and look after my daughter (single mum) and my local heath centre were unable to help.
The tests came back ‘good’ or as my GP told me, my tests were actually perfect for my ‘age’.
But I didn’t feel perfect.
Eventually my GP diagnosed me as having Long Covid because my health before and after Covid was so different.
Diagnosing Myself
For a while I used my usual herbal remedies, essential oils, homeopathic pills, supplements and dietary changes. Remedies that had worked perfectly for the last 25 years based on supporting my inherited constitution.
And I seemed to get worse.
My local surgery offered me steroid inhaler for my asthma, steroids for my sinus, anti-histamines, Pronton Pump Inhibitors (PPI) and even HRT to ‘see’ if they ‘helped’.
I used a nasal steroid for my swollen sinus face once – but the next day the swollen face was gone and replaced with my right eye looking like something from a horror film. The ‘sinus reaction’ had escaped to the sinus area behind my eye.
I already had a long history of ‘reacting badly’ to normal medications and wasn’t convinced ‘testing’ by medication was the right path for me.
By this time I was worried and frustrated.
Without a concrete ‘diagnosis’ I was stuck in the dark.
I knew from my practitioner training that I needed to find a ‘root cause’ – but Long-Covid is cloaked in mystery.
The one ‘strange’ but consistent symptom pattern was waking up in the early morning with a ‘reaction’ usually sinus/skin rash/itchy ears which then developed into feeling faint, dizzy light-headed, followed by IBS symptoms and then joint pain/swelling and extreme fatigue.
This was a consistent pattern (70% of the time) – whatever I did during the day, my reaction seemed to happen between 3 – 5am the next morning. Weird right?
(Apart from quick onset asthma to chemical fumes/scents which were frightening)
I got tested for autoimmune which came back as negative.
Eventually I came across Mast Cell Activation Syndrome (MCAS) which finally seemed to describe me!
Mast Cell Activation Syndrome (MCAS)
According to the WebMD MCAS is “Mast cell activation syndrome, also called MCAS or mast cell activation disorder, is a condition that causes mast cells to release high amounts of chemicals into your body. This chemical release causes you to have many symptoms.
I spent almost a year researching MCAS. There is a lot of information online. But here in the UK after waiting months for an appointment an Allergy consultant told me ‘ we don’t recognise it here in the UK’. And shoved me out the door in under 10 minutes.
Yes I still feel bitter about that.
The harsh truth is that it is difficult to test for MCAS or histamine intolerance – unless and maybe even if you go private.
By this time I had no social life (apart from work) and had to leave at least two jobs because I reacted to something in the work place. By this time I was having sudden scary reactions to chemicals, perfumes and scents including essential oils – so I went into recluse mode.
Through trial and error (and many reactions) I confirmed foods high in histamine or histamine liberators were an issue for me.
Even healthy foods, herbs, essential oils and supplements can be high histamine.
A low histamine diet really helped. So did taking Diamine Oxidase enzymes and Saccharomyces Boulardii.
Some people follow a histamine bucket approach where they can strategically include a few higher histamine foods if they keep their overall lifestyle low histamine.
Other people take various anti-histamines but there is conflicting information about the long-term impact of switching off the bodies alert signal from the immune system. *With conditions like MCAS you may need to take both H1 & H2 blocking antihistamines and at much bigger dose.
Call me stubborn, but I still wanted to find the root cause and heal myself.
Insights from Living with MCAS / Long Covid
I firmly believe that the most healing diet is when you can eat a full varied diet. The low-histamine diet on top of my existing dairy and gluten-free requirements was incredibly limited.
Turns out that I could eat chips and plain crisps with no reaction – and boy did I make the most of this!
I spent hours researching ‘alternative’ recipes which was my inspiration for creating the ‘Nourish‘ Challenges. My beautiful kind daughter was very tolerant of my experiments and meal time choices
And if I ‘cheated’ or accidently ate a food that was high in histamine or an histamine liberator I was ‘punished’ with painful and weird symptoms.
I would wake early morning in agony with one red swollen eye and an unhealthy ‘pressure pain’ behind my eye. I would boil a kettle and grab a bowl and towel and steam my face. My eye would stream thick clear gunk and there was revolting post nasal drip. After this I could open my eye and see, but the whites of my eye were blood red. Nice. I would repeat steaming and use a heated eye-pack and my eye and the pain would slowly return to normal within 2-3 hours.
Then would follow various strange symptoms, sometimes I had a tight chest and lost my voice, I often felt dizzy and light headed and ‘wobbly’, and worse for me was that my head felt fuzzy and muddled. There would be pain in my neck, hips, and knees and sometimes my hands and feet would become swollen and painful. And for ‘days’ I would feel wiped out. Just in time for the next reaction.
I share this because so many people said they also suffer with ‘hay-fever’. This was not the same as hay-fever although hayfever may be linked to histamine overload.
I had a lot of problems with supplements and ‘natural’ remedies that also caused reactions. DAO (Diamine Oxidase) which is a miracle support for me, but when my supplier ran out (!) I reacted to each alternative I tried.
Let’s talk about my hair!
I quickly found that hair products including shampoo caused really big reactions. The more often I was reactive the more I noticed hair loss and just on one side of my head!
Honestly I spent a fortune on trying different ‘natural’ shampoos. If I didn’t react to the shampoo then it didn’t suit my hair. Call me vain but hair like straw is not a good look. Yes even the no-poo curly hair shampoo caused reactions. So did organic ones made with essential oils.
In fact it is very expensive having a reactive body! In the end I found an inexpensive unscented shampoo bar. It was the same story with all my body and cleaning products. Many essential oils trigger a reaction.
Reacting to Nature!
I also reacted to nature! As a former natural therapist & herbalist the irony is not lost on me. Grass and tree pollen were problematic and so was any time spent in my garden or walking my dog (RIP my beloved Sox).
My home and street is surrounded by grass – that needs regular cutting. I did remove almost all of my lawns and just prayed that the replacement plants were kind to me. I also gave up my dream of walking holidays and permculture forest gardening.
Most ordinary people would by now have taken all the anti-histamines!
I will try to explain.
Call it intuition, pig-headedness or dilusional thinking but I 100% believe that if I can find the root cause then I can find a healthy way to support my body to recover and repair.
And that was the problem with a MCAS or Histamine reactions or Long Covid Diagnosis – none of them gave me a root cause I could work with.
Whole Body Healing
Diet and supplements are never the whole picture when it comes to healing.
I include (where possible) many self-care practices in my daily routine.
Pssst my regular newsletter is where I share more details about my current self-care practice.HERE
Close family and friends are my life-line and are incredibly important to my whole body healing. I am still at the time of writing this, pretty much living like a recluse.
The enforced isolation that you can experience on the healing journey is one reason I would like to create an online self-care community.
I recently lost my beloved dog Sox, and know first hand how healing our pets can be and how real the grief of losing them is.
Something else that I believe is that the body mind and soul are all connected.
Specifically I think that past experiences especially trauma links the mind to physical illness. So I was aware that my set of symptoms directly linked to fear – the world literally felt unsafe for me.
I am not a worrier by nature. But in iridology I have the golden eye which is linked to kidneys and fear. I deal with my fear (of histamine reactions) by controlling my situation and avoidance.
Which in one way is prefectly normal and practical.
So another part of my healing journey is to look at fear. I scheduled therapy sessions which were really helpful and have noticed that recognising my fear pattern is helpful in reducing my symptoms.
This is where Journal work has also been helpful.
Dealing with trauma or past experiences that impact your current health, is a work-in-progress for me.
However I am also cautious about getting stuck in your past – while its helpful to identify previous causes and patterns – please know that the focus should be on creating a better future.
I also try to avoid blame in all its forms. Tricky because it is so satisfying to give the blame to someone else.
Instead I try to ask:
How am I now going to respond to this situation?
What new and better choices and decisions will actually improve my future and bring me inner-peace?
Light at the end of the tunnel?
Whew well done if you’ve made it this far!
I had a bit of a ‘red herring‘ in that both my daughter and father had genetic Haemochromatosis (Iron overload) which interestingly can display many similar symptoms to what I experienced.
It took months to wait for tests and results – and I was hopeful that I’d found my root cause.
But no surprise my liver came back as ‘fine’ and blood tests confirmed I am just a carrier.
I am sure many of you have been in this strange situation where you almost want a test result to show something!
If my story does nothing else, it highlights the frustration of test results!
New Symptom – Upper Stomach Swelling
Anyway earlier this year 2025 I noticed a swelling in my upper stomach.
I thought it might be a flare-up of diastasis recti (caused by having C-section complications 20 odd years ago) and started following the exercises. NB I do think I have DR
However my stomach swelling quickly got larger and more painful despite me eating less food. It was a strange ‘stretched feeling’.
More tests and examinations followed all showing as fine!
Grrrrr
My GP was really pushing for Omeprazole – which conflicts with DAO – so I had a dilemma.
But for once my attention was on my IBS not my histamine reactions.
Honestly my IBS symptoms were much easier to deal with except now I had a painful swelling I couldn’t ignore.
Handy reminder to myself that ALL symptoms no matter how small are important
Long story short I started to consider SIBO Small Intestinal Bacterial Overgrowth.
SIBO can cause painful upper stomach swelling reduces DAO from being made in the body – ding dong! And there is a direct link between SIBO and Histamine intolerance (MCAS). AND Omeprazole can increase the risk of SIBO.
I couldn’t get tested for SIBO on the NHS so I went private.
My test result was positive for Hydrogen SIBO!!
Which brings me to the end of this mammoth post.
And the start of a brand new post.
This was my personal story about stubbornly holding out to find a root cause, probably a bit extreme to most people.
If you only take medicines to reduce/hide symptoms – without addressing the root cause – the body will keep giving you new symptoms
I quickly discovered that being tested positive for SIBO was just the first step and that there is very little free support/guidance for when you have both Histamine/MCAS and SIBO together.
So that is what I will share next – my journey to address my root cause!
Self-Care
What I haven’t talked about is my regular daily self-care practice – which has been a crucial part of my whole journey.
I do not think I would have survived this last few years without a self-care practice supporting my poor body each step of the way.
Join my newsletter to read my current experiences and adventures with self-care as I follow along with you!
