What's been helping you manage your Quality of Life?

Hi all,

3 years in here. It's been a rollercoaster but luckily I'm in a good spot these days. I have a great quality of life but I live with limits.

I've done my share of research and have ended up with a fairly defined protocol that helps me manage my quality of life. This isn't medical advice (I'm not a medical doctor or even the other kind) but I'd be really interested to hear what others have found works for them.

Here's what I've been up to:

• A low(ish)-histamine diet
• Antihistamines (taken daily)
• No Caffeine, no alcohol, low sugar, no craic.
• Getting eight hours of sleep
• Getting 20 to 30 minutes of sunlight first thing in the morning
• Five minutes of breath work
• 20 minutes of meditation
• Taking supplements: niacin (nicotinic acid form), vitamins C, D, B12, quercetin, turmeric, phyto-V probiotic, creatine, protein and selenium
• Graded exercise, under the guidance of a physio (I could only tolerate graded exercises after 14 months)
• Weekly therapy sessions
• Drinking 2.5 L of water a day
• Doing something that brings me joy every day
• Connecting with people
• Pacing - managing energy output across physical, mental and emotional energy is critical - even at my stage

Notes:

- Pacing is crucial. Even now.

- I've actually noticed a great improvement from the low-histamine diet and antihistamines. Obviously, MCAS is currently a potent driver of symptoms for me. I will note that adhering to a low-histamine diet is impossible, I think low(ish)-histamine is where I’ve ended up.

- You can't be this rigid all the time. 80% of the time do your best, the rest of the time don't worry about it.

Would love to hear what you find useful in managing your illness.

Cheers,

Paddy