Flying Fyllis

25/05/2026

4th time living in with a difference, guided by and not productivity, and with a temporary nature to it.

13/05/2026

05/05/2026

💉 After a long and rocky road, I’ve started a trial of interleukin 1 beta (IL1b) blocker to dampen and responses causing havoc to my system, bones, skin, gastro, internal organs & immune system.

Although I’ve had undiagnosed periodic symptoms since childhood, it worsens after infections, from malaria to pneumonia. From having gaps in between before, the symptoms since being hospitalised with pneumonia 3 years ago are now constant with flares on top breaking through and other disease modifying anti-inflammatory drugs DMARDS.

Having multiple complex rare disease manifestations is difficult to manage, carefully balancing overactive and under-active immune system. Whilst being immunosuppressant, already having to manage my already prone to infections, it will hopefully outweigh the adverse inflammatory effects.

I had my first injection today. It was really easy to self inject and no adverse effects. I had lots of reactions to vaccines recently so I’m relieved-so far, so good.

I know that biologics, and specifically Il1 medication, is so difficult to get diagnosed & approved on all health systems. It is expensive. Ironically my insurance spends more than the medication cost on managing my symptoms, such as regular physio and other therapies; I spend more on this than the medication cost! After several appeals and international MDTs with 6 top doctors across NHS & private clinics, my insurance finally approved it.

Hoping for improvement soon 🔜 🙏 & will monitor it closely during the 3 month trial period, on top of the other meds 💊🤦‍♀️.

It’s my first time on biologics, so if anyone has any advice on them, cold chain storage or travel let me know. I’ll stay in U.K. until I start to feel a bit better.

(As an aside disclosure, I recently started personal financial investing, and I hold indirect/direct holdings in SOBI who manufactures the drug, for interest on the company performance as a rare disease orphan drug manufacturer, as part of a diverse portfolio of largely passive ETFs. It is unrelated to my personal medical treatment & not intended to give medical or financial investment advice.)

25/04/2026

What’s I’ve learned this week as U.K. landlord, now as an overseas tenant with non-traditional income, looking for short term let in London under the new tenancy laws from 1 May.

10/04/2026

Nighttime herbal concoctions 🍵 for soothing after some heavy duty anti-inflammatory & immuno-modulators medication 💊.

All to only keep a suboptimal baseline level but better than complete write off mode!

My disease is breaking through the medication, so I’m awaiting approval for more invasive treatments on top of all this… more on this if it proceeds after insurance & MDT back and forth 👩‍⚕️ 🧑‍⚕️ , or options otherwise.

It has taken me quite a while to get used to taking any meds, let alone adding medications on top. But medication free has dug me into a decades long hole that is difficult to reverse untreated disease progression and damage.

It took me a while - several years - to find the right combinations, versions (like lactose free and limited excipients that irritate me), a lot of stop-start, reactions, perseverance, double doses, and balancing anti-inflammatory optimisation with minimal immunosuppression due to my frequent infections. Options are therefore limited, as these tend to be two sides of the same coin - suppress the immune system to reduce overreactive inflammatory immune response. But when you have both under & over reactive immune system, this balance becomes quite tricky. Because for me the infections make everything much worse.

I use both conventional western medicine & herbal remedies when indicated & approved by a doctor. My gastro recommends Aloe Vera colon cleanse tablets and others. My neuro recommends Alpha Lipoic Acid, commonly used in diabetic neuropathy, for my nerve numbness. Rheumatology like Vitamin D supplements when low, and I also take Vitamin C for immune boosting. But many supplements may interact or cause reactions, so I have scaled these back to basic specific Dr recommendations.

(Not medical advice & consult a doctor for what’s best for you).

09/04/2026

Living with chronic illness and conflict is tough, but with the right care, it's manageable. I'm grateful for accessible treatment options, but know many don't have the same luxury.

28/03/2026

Top & English spots in E1 for remote work fuel and easy city access that I’ve discovered this month ☕️ 🍳

📍Grounded London Whitechapel E1
Great for halal & beef sausage

📍Locke Coffee Club, Lehman Street, E1
Great for co-working space

📍The Second Wife, Hessel Street E1
Great for halal & beef sausage / bacon 🥓

📍Urban Baristas, London Dock, E1
Great for flat hunting & St Katherine’s Docks walk

25/03/2026

💯 My lens, my perspective, my world 🌍 📸

08/03/2026

Why I left Dubai temporarily during the current situation, with the luck of the universe for a flight ✈️

02/03/2026

🇦🇪 safe at home 🏡