Ivy's Story

My symptoms have included facial swelling (especially the eye sockets and lips), rashes and hives across my full body, vomiting, diarrhoea, bloating and constipation. I have also experienced anaphylaxis, migraines, anxiety, OCD, depression, tremors, slurred speech, memory loss, brain fog and joint and muscle pain. I am on the waiting list for ADHD assessment. I have postural orthostatic tachycardia syndrome (POTS), manifesting as fainting, dizziness and shortness of breath. In addition I have had asthma and coughing, throat swelling, fatigue, IBS, tinnitus, swollen glands and night sweats, and I have difficulty regulating my temperature. I have two herniated discs, hypermobile Ehlers-Danlos syndrome (EDS) and Raynaud’s syndrome. 

My triggers and intolerances include food (this changes daily), exercise, stress, heat, cold, alcohol, caffeine, sunshine, insect bites, strong smells, vibrations (car journeys make me very ill), cleaning and washing products, make up (I can’t wear eye make up any more), fabrics, hair and my own hormones. I am allergic to apples, peaches, birch pollen and some grass pollen. 

I have bone missing in the base of my spine, which is a very rare abnormality. This was missed on the first MRI that I had ten years ago and I was told when they found it that it was ‘unlikely to be causing my back pain’ – as if having a twisted pelvis wouldn’t cause musculoskeletal issues!  

I’d always had weird allergy symptoms, but in 2018 I had my first true acute-onset MCAS flare. I was self-employed at the time and had just lost my biggest-paying contract. In the years before this I had lost my job as a teacher due to my increasing disability, and I honestly believe that stress was the trigger. 

I was already aware of chronic conditions, because I have POTS and EDS – with MCAS, the ‘unholy trinity’. I initially presented to my GP with a swollen face and was treated for an acute allergic reaction with antihistamines and steroids. Unfortunately the reactions came back as soon as I came off the steroids, with facial swelling a daily problem. I was covered in a rash that I can only describe as being like a chemical burn. Symptoms became more severe over time and medication doses were increased. 

I presented to my GP several times with difficulty breathing and swollen lips, and was told to call an ambulance or drive myself to A&E (I drove myself to A&E and put a complaint in to my GP). I spent the day in A&E and was treated for anaphylaxis with an unknown cause. They discharged me with EpiPens, steroids and antihistamines.  

Daily reactions continued to the point where I couldn’t eat solid food and was living off only protein shakes, sometimes turkey, and sweet potatoes. I was put on an NHS immunology waiting list and told that an appointment would take about a year to come through. I lost a lot of weight. 

I paid to see an immunology specialist privately at London’s Harley Street: he diagnosed a couple of ‘true’ allergies, but nothing that could explain my symptoms. Meanwhile I had low diamine oxidase enzyme. Another private immunology specialist told me that I have pollen food syndrome, but this didn’t fully explain my reactions. With another private specialist I was put on mast cell stabilisers (sodium cromoglycate) which improved my allergic reactions, but didn’t stop them. 

In 2019 I finally got to see an NHS specialist who diagnosed me with MCAS and gave me appropriate medication to treat it – Montelukast was a game-changer for me. My symptoms stabilised and I began introducing new foods back into my diet. The overall time from first reaction to diagnosis was about a year-and-a-half. During this time I was trying to work and continued to have reactions daily, as well as dealing with complications from POTS and EDS. 

MCAS is honestly one of the worst conditions to live with. No one understands it, even when you explain it. You stop trusting your body, because you never know what it’s going to do from one day to the next. Once you’re diagnosed you may not receive any support.  

MCAS hits your self-esteem because of the way it changes you physically (I constantly look ‘puffy’ now – that’s the only way I can describe it). Just daily life is hard. MCAS impacts everything: your ability to work (I work from home on a part-time contract. I would not be able to get a job outside my house now); your ability to exercise; and your ability to socialise. It also affects your confidence and trust (in yourself and the medical professionals who are supposed to care for you). Relationships with friends and family take a hit, because your needs and triggers are constantly changing. Professional relationships are also difficult – I have lost jobs. I don’t really socialise and don’t travel. I have adaptations indoors (an accessible bathroom and an adjustable bed). 

I find that health professionals don’t understand what you have wrong with you unless you pay to see a specialist and even they don’t always know. I will quite happily become forthright with people if they don’t listen, so I actually got diagnosed quicker than most. However, follow up treatment is dire.  No one checks my heart condition.  For pain management I was given a transcutaneous electrical nerve stimulation (TENS) machine: my experience of this specialism has been poor. No one reviews my EDS. I get a telephone call once a year from the clinic at Broomfield about my MCAS.  

Fainting is my biggest problem, and I also get vomiting and/or diarrhoea – but I power my way through. Today exercise is the best medicine for me – I walk and do yin yoga daily (I’m a trained yoga teacher). Prescribed medications and avoiding triggers are a big help, along with pacing myself. Working from home has been a bonus: I’ve learned to advocate for myself and won’t take any nonsense from anyone. I am also loving writing my books and learning to stand in my power! 

I wish others knew that triggers do change all the time – I’m not making it up! It’s true that I really am as sick as I say I am. Also, I feel terrible most of the time, but I carry on anyway. I wish medical professionals would listen to women, and provide shorter waiting times and appropriate aftercare. MCAS should be treated as an emergency, and there should be MCAS nurses, like you get for Parkinson’s disease. 

I have connected with a few people with the condition, all female and all struggling.  Some are worse than me, so I consider myself fortunate, as I do still exercise and work. But I’m also incredibly stubborn and strong-minded. I am grateful to Mast Cell Action for signposting me to specialists. Today I'm on Mast Cell Action's Wellbeing Advisory Board, and help with promoting the charity.