Thank you so much Fran for joining us!

Thank you for having me.

Before we begin the interview, would you please mind telling our viewers a little bit about yourself?

Hello! I am Fran and I’m from near Wolverhampton in the UK. I am a married Mum of one and am 36 years old. I studied Religious Studies and Sociology at Lancaster University and have been a qualified RE teacher for the last 13 years. I love to watch films, spend time with my family and eat cake!

At what age did you first develop Asthma? When did you first notice symptoms?

I have had asthma since around the age of 3. It has always been pretty well controlled with my regular medication. I was able to enjoy socialising, work, swimming and days out. Unfortunately, in October 2020 I contracted a virus which triggered an over reaction of my asthma. Following severe exacerbations, I was diagnosed with severe eosinophilic asthma. 

What is your medication/ treatment for Asthma (based off what your doctor has advised)? Which medications have you tried, and what works best for you now? Do you ever have any side effects from your Asthma medications (puffers, prednisolone) and any tips to help this?

 

Until last year I was on the Symbicort MART regime and this worked really well for around 4 years after being on Salbutamol and Qvar. I didn’t get on well with Qvar and was glad when I was able to change this with my asthma nurse. 

These days I am on:

• Fostair inhaler
• Spiriva inhaler
• Uniphyllin Continus
• Montelukast
• Phosphate
• Salbutamol inhalers
• Salbutamol nebuliser solution
• Benralizumab biological injection

Starting these medicines in quick succession, I certainly did encounter some side effects. Fostair definitely needs to be taken with a spacer to help it enter the lungs but also to reduce the risk of oral thrush. Uniphyllin upset my stomach for a while and gave me hand tremors but settled after a few weeks,it is important to have regular bloods taken to establish the correct dosage and avoid theophylline toxicity. Montelukast gives me bizarre and very vivid dreams, this took a bit of getting used to, also grateful that the Dr gave me the heads up about it! They have settled down now, but it is a common reason why people stop use. When I’m on salbutamol nebulisers I find palpitations and shaking hands extremely annoying, however, now I know to expect it, I try and make sure I’ve spaced them throughout the day. And finally, the hero of the story, Benra!

The biological has changed my asthma dramatically; the side effects I do suffer with are flu-like aches and pains for up to 2 days after, but that’s much better than the alternative. 

I do still require prednisolone however, my doses are much lower than they were October to December, only needing a rescue pack once every two months. I do suffer from roid rage, insomnia, moon face, hunger, restless legs, the lot. So I really have to need it as it’s not my favourite, but it gets the inflammation down. 

Do you have an Asthma specialist? How long have you been seeing this specialist? How have they impacted your Asthma journey – changing medications, possibly advising other treatments for your Asthma?

 

Following being admitted to hospital in October 2020 I was passed on to Dr M Doherty, Respiratory Consultant in Dudley and his respiratory team. Developing a severe respiratory disease during a pandemic doesn’t seem like great timing, but I couldn’t be more grateful for the speed, accuracy and professionalism of the team. I know I’m a pretty rare case going from admission in October to specialist in November and starting Biological therapy in December. 

I found it frustrating to begin with, adding on a different medication at a time and seeing how I adjusted, looking back it makes sense, it was trial and error. I also received medication for Gerd, sinusitis, vitamin d & phosphate deficiency, this has helped reduce symptoms such as acid reflux and post nasal drip. I was also given a sleep study which, on my second attempt in May confirmed that I have moderate sleep apnea. I am also currently waiting for a referral to a Speech and Language therapist and ENT to confirm a diagnosis of Inducible Laryngeal Obstruction. 

What ‘triggers’ your Asthma? How regular are your flare ups? Have you ever been hospitalised?

 

In the past, my biggest triggers were cold air and running. Since  October and subsequent lockdown restrictions being lifted – hard to find triggers when you are home all day! My triggers include:

• Hot weather & cold weather 
• Thunder & lightening
• Hay Fever
• ‘Chemical smells
•  Aerosols &  Perfume
• Laughing
• Alcohol
• Stress
• Exercise
• Talking
• Fires / BBQs

So…… life!! This has been a really difficult process for me and my family. Especially the panic on my 6 year olds face when he can smell next door having a BBQ and he rushes to shut the doors and windows. We’ve had to cancel days out, weddings, parties because I just don’t know. I have found recently that using a Cambridge n95 face mask helps and this has been a blessing to keep my son calm, that I can be out a bit more and not have to fear everything being a trigger. 

I seem to flare up with the weather and fires, so living in the UK and near farms hasn’t been the easiest but again, now I’m getting more tuned into my warning signs, it helps me to act and adjust. My warning signs include lower back pain and ‘huffing’. My peak flow varies all over the place, so isn’t always the best indicator, but I still do it daily. 

 In May I had a severe attack and had my first ambulance ride to hospital. Still looking back there wasn’t a ‘clear’ trigger, I was asleep and woke up having an attack. After getting my hubby to sort out medication we realised I needed more help. The paramedics were fantastic and continued to pump me full of nebs! On admission to A&E (emergency department) I had various tests carried out and the Dr said it was likely to be anxiety, so I’m just writing up your discharge . Nope. I asked why? 

 *And this is now the reason why I advocate for asthmatics and want further help, training and re branding on the spectrum of asthma.*

 You’ve responded to the nebuliser. 

Your blood results are clear. 

Your oxygen saturation is good.

Your lungs are clear. 

You aren’t wheezing. 

 I know. 

However, 

My chest is tight – like an elephant is sitting on me

I have needed almost 12 salbutamol nebulisers via oxygen in the last hour.

My saturation is good because I compensate.

My lungs are clear because my lungs are always clear

I don’t wheeze…. Ever

But have you checked my blood acid? What’s my phosphate like? How are my bicarb readings?

Then I coded. I don’t remember much, but time passed. I woke up my room looked like a bomb had gone off. I was covered in tubes and cables. Two A&E Doctors said, “She’s back”. The Dr who almost discharged me said, “oh maybe it’s not anxiety”. Hmmm. Maybe not. 

I was admitted. My respiratory consultant found me and I cried. I cried because I didn’t need to explain a single thing. No surprise but my bicarb was low, my phosphate was low, my blood acid was high. Severe asthma doesn’t always present like asthma. After 3 days of biscuits, infusions and naps, I was sent home. Exhausted, bruised but breathing.

Do you have any allergies, other pre-existing medical issues? If so, could you please share – what medication do you take etc.

I do suffer from hay-fever, so take Loratadine. I take Sertraline for anxiety, which following that situation, I am now slowly reducing again. 

How does your Asthma and these other medical issues affect each other? What routines have you adopted to ‘help’ prevent a flare up?  –  if you are still struggling to work out what’s best for you, that’s fine too.

 

I find my asthma and hay-fever wind each other up, but most of the time get along OK. The biggest issue now is the ILO and asthma. It can be difficult to work out which is which and quite often an ILO attack will trigger an asthma flare. Fatigue has been a big issue for me and I notice the more fatigue I experience, the longer and more severe my flare will be. 

Have you ever tried ‘alternative’ methods for your Asthma (and or allergies) such as Chinese Medicine, Acupuncture and or Herbs? If so, could you tell us about you experience. If not, could you tell us why you are hesitant? 

I haven’t tried any alternatives, I wouldn’t say I’m particularly hesitant; but reaching out to a wider asthmatic community, I know I am in the early part of my journey and need to find my feet first. I did spend 1 month dairy free to see if that reduced my mucus production and flare ups, but it didn’t really make a significant difference, but I’m glad I gave it a go. The biggest impact for me has been learning to breathe through my nose. My respiratory physio, Hannah, called me a hyperventilating mouth breather in our first session. I was offended! But hadn’t realised. When I was mouth breathing I was making an already difficult situation much worse. I have since taken part in Buteyko breathing clinics and regularly mouth tape. The benefits I’ve found have been amazing. 

Has Asthma impacted your daily routine/ life and or career? If so, how? If you have a specific routine?

 

Oh this is the big one. As mentioned previously, I am a teacher. Unfortunately, given my list of triggers, this isn’t a profession compatible with my condition. As a result, I have been off work for almost a year. It’s heartbreaking, but I have to acknowledge the reality that my health is my priority and I may not be able to teach, for now. 

Again, this all started during an unusual time in the UK with lockdown and shielding implemented for the Clinically Extremely Vulnerable. I’m only now starting to get back outside, initially I thought I was finding it difficult due to anxiety, however, I am more aware that maintaining a routine is too much on top of my asthma. 

Living with severe asthma is a full time job. Scheduling appointments. Attending appointments. Arranging for someone to take me. Arranging for someone to talk to me, ordering medication, collecting medication etc. 

Are there any routines you have adopted to ‘help’ your Asthma symptoms? Such as a type of daily exercise? Do you follow a specific diet to avoid triggers?

 

I make sure that I take my medication the same time each day. This includes taking my peak flow readings. I am currently waiting to start pulmonary rehabilitation as my mobility has decreased massively and I now need a mobility aid to help, but I do make sure I spend 5 minutes walking either in my garden or up and down my garage (weather dependent) each day. 

 I try to adopt pacing in my routine and try to do a little more on my better days. 

 

How do you navigate life around your Asthma? (Growing up, going out, socially, and now as an adult with your family and friends)?

 

This is still a tricky one. Growing up it didn’t have a huge impact on me, I used to be the only kid that wore a scarf but nothing more than that! Life with asthma has been pretty uneventful, occasionally after a few too many wines I may flare up on a night out but a full fat coke and salbutamol would sort that. In lessons, I would become breathless especially with all the moving and talking, but never had issues taking my inhalers in class, it actually opened up some nice conversations with the students. It was an issue when year 8 boys came back from PE drenched in Lynx, but most of them knew to tone it down if they had me! 

But now…. I haven’t been out to a pub or restaurant in over a year. We have cancelled 4 family holidays, declined 2 wedding invites and reduced our days out. Part of this is due to the fact that I can’t drive far anymore, the fatigue from my asthma plus just driving is too much. I have to balance out how best to spend my daily energy allowance! Unfortunately, this currently means I can’t waste it on the good stuff! However, it’s also controlling the unknown – are people wearing lots of perfume /deodorant? Will people be smoking? Is there an outdoor fire pit? What’s the weather like? Is it easy to access? How far is the nearest hospital? 

How do you make the space around you feel safe?

I have a travel nebuliser, so I am not restricted to stay inside or at home. This makes me feel much safer and I know it is comforting to my friends and family. I now have a hospital go bag at the ready and have needed this a couple of times. After being in hospital in May I made a card which includes all my emergency contact details, consultant, medication, how I present in an attack, so whoever needs to know doesn’t need me to talk it through!! I also registered my phone with 999, so in the event of me being alone and having an attack, I can text rather than call, this is a huge relief. 

Has Asthma impacted your mental health and if so, how do you work in resetting your mind? If you don’t mind sharing, please tell us why.

 

Considering I have had asthma since childhood, this new diagnosis has really impacted my mental health. Initially, it was the timescale, of not knowing why I wasn’t getting better and catastrophizing that maybe it isn’t just asthma. Once I had my eosinophilic diagnosis and a treatment plan, I was able to try and find out more. However, there wasn’t much information out there. I started following a few FB groups, however this made my mental health worse reading people trauma dump over how many times they were being hospitalised, resus, intubated etc… I reached out to my local mental health team, after using them the previous year for generalised anxiety disorder, I had taken a lot of comfort from CBT and was desperately trying to implement these strategies in my new experience, but I just couldn’t get them to work! They were great and I was referred to a therapist in weeks. 

The first few weeks went well, acknowledging I was struggling more with mood than anxiety was a shift and I found myself getting really angry every time she mentioned anxiety – guess the A&E Dr got me triggered! We worked through some things, but mostly it was a chat. Nothing we did was of much use and I spent most sessions saying it wasn’t useful so I did this this and this instead. I was told she was a chronic illness specialist, after session 6 of this too and fro I asked her about it. She wasn’t. But said it sounded like a great idea, unfortunately not available in our area. We decided that we would part ways. I was really annoyed that I’d ‘wasted’ my time and energy on therapy which wasn’t making a difference. On reflection, it was, it was nice to talk. But it was exhausting, validating the impact of my illness, talking about being disabled, not being able to work. Behind this, I had been researching, I had found some wonderful books about chronic illness and grief, which transformed how I was thinking. This was what I needed. 

I started to live by the mantra #acknowledgeadjustact (Acknowledge, Adjust, Act) 

This was a huge shift. I needed to acknowledge the difficult or the uncomfortable whatever it may be. I don’t want to change, I don’t want to battle, I hate the language of illness and fighting, so I chose to adjust. Finally, I am living with this Chronic illness which is disabling and I will act as such. 

After my hospitalisation in May, I signed up to the AsthmaUK ‘Take Steps’ challenge in June. I needed to work out what my new levels and boundaries were. I set the challenge of walking 10 miles in 30 days. This was hard. I’m not sure if it was the mental challenge of raising money, advocating or something else, but it really kept me going. I raised over £1200! I slept most of July. 

 In July, at the end of my month-long asthma focused charity challenge, I needed something to keep me busy. I had used my social media platforms to be accountable for my daily steps but also to hopefully educate and inform. This is when @breatheandrepeat_ was formed. I set it up as a way for me to journal my experience. My experience of health, whatever that may be. I was very aware that lots of social media accounts I followed, myself included, just showed the highlights. I wanted to be honest. 

I don’t know how long I will keep my account, but right now, it helps me. If it can help others along the way, that’s a bonus!

Do you have an action plan for your Asthma? How regularly do you update this? – is this something you do with your doctor? GP?

 

I do have an asthma action plan, from my Asthma team – who are legends! This is a very fluid document for me as my asthma seems to change regularly. However, this is always done in consultation with me. 

Lastly, how do you advocate for yourself as an Asthmatic?  

The biggest way I am currently advocating for myself is through my Instagram. I really want to feel part of a community as this can be really isolating, especially when society can have a very limited understanding of asthma. I try to use this platform to be honest about my experiences, the things which work, the things which don’t and how I’m doing. I think as a teacher I want to educate, even if I can’t do it in the classroom, I’ll still do it. 

Top tips: 

1. Educate yourself on your condition 
2. Follow your treatment plan
3. Move – however little that may be
4. Breathe through your nose 
5. Keep a check of your physical and mental health 
6. Try and find people who ‘get’ you
7. It’s OK to ask for help 

WOW. Thank you so much Fran for allowing us to interview you for FLOW! It has been such a powerful, insightful interview getting to know you and your story. Much of what we take on, we have to acknowledge, adjust and act/ accept to move forth, which can mostly always be something to share with others in ways of inspiration for their own journey.

l want to truly, truly thank you for allowing tac. to interview you and for sharing your story in such honesty and depth. It is so inspiring, and l can only assume how fantastic the response will be from our community. – Valentine, Founder of tac. 

Thanks so much for having me – Fran x