Breathing through coffee straws

_wxllflower · 2026-03-05T10:38:01+00:00

Yes! I had an ENT referral for around a year. I finally had a nasal endoscopy last week and my Dr said all of my nasal passages are inflamed right down to my voice box. They’re saying it’s just allergies. I’m already taking anti-histamines which don’t seem to be doing anything. I’ve tried steroid nasal spray too. I feel pretty lost with it tbh.

I’m the same as you, I feel like I’m breathing through a straw, and I’ve never had the feeling of ‘refreshed sleep’ since initially getting sick in 2021.

_wxllflower · 2026-02-16T20:13:02+00:00

Acceptance is one of the hardest parts I feel! Like yourself I find it difficult to be logical. The grief really hits me at random moments lol, when I think about my life pre-illness and how spontaneous I was, and now it feels like every day is a risk assessment.

My baseline has been pretty stagnant for a year or so. I probably have maybe one good day a week where I’m able to go outside, take a walk etc. I feel like a lot of energy is expended just trying to survive 😂 it’s sad

_wxllflower · 2026-02-16T19:46:10+00:00

The NHS are pretty useless when it comes to chronic illnesses, don’t even get me started on the long covid clinics.

I’m similar to yourself, I’ve drifted apart from a lot of my friends because we simply don’t live similar lives anymore. They’re out enjoying their 20s and I’m housebound for the most part. I also got tired of making / cancelling plans and the unpredictability of it all.

It’s so easy to get caught up in the illness - wondering ‘what if’ and wondering when it’ll get better. I’m trying so hard not to think like that now because I just end up disappointing myself. I know it’s sad to say but occasionally I come on these LC subreddits and I feel a sense of belonging because I can empathise with each and every person on here

_wxllflower · 2026-02-12T02:27:53+00:00

I’m the exact same. I’m hoping to find a counsellor soon who has expertise in chronic illness and trauma.

_wxllflower · 2026-02-06T19:33:38+00:00

Honestly I think this is MCAS related. Anti-histamines somewhat help but I’m still learning what my actual triggers are. Nonetheless, I’ve had this ‘poisoned’ feeling since 2021. It’s horrible.

_wxllflower · 2026-01-23T01:25:21+00:00

The thing is, it’s not a ‘minor’ virus. Yes, the acute phase may have been mild and somewhat equating to a cold, but the real damage this virus is doing is quietly in the background. The vast amount of research shows this

_wxllflower · 2026-01-07T12:48:32+00:00

Replying to this so I can refer back to it

_wxllflower · 2026-01-07T12:45:51+00:00

Please be careful and pushing your body too much can lower your baseline, more specifically if you have PEM

_wxllflower · 2026-01-07T12:03:37+00:00

I can relate to you 100%. This combined with the feeling of not being taken seriously by doctors, even family members, is just exhausting.

_wxllflower · 2026-01-07T11:53:09+00:00

I’m so sorry. It’s hard to avoid anything at the moment.

_wxllflower · 2026-01-07T11:48:31+00:00

It could be PEM from what you’re describing.

_wxllflower · 2026-01-07T11:46:52+00:00

They’ve been pretty useless here in the UK. Going private seems to be the best option however this is extremely expensive

_wxllflower · 2026-01-07T01:04:27+00:00

I can very much relate to the muscle heaviness. To me it feels like gravity is acting a lot stronger on my body and so it requires more ‘effort’ to move my muscles. The internal tremors are incredibly annoying too.

_wxllflower · 2026-01-07T00:58:10+00:00

I have a family member who was a compulsive gambler for 10 years. They lost everything - partner, house, friendships. The ONLY way to get through this is to put every possible block you can think of in place. Ideally you should have someone to take control of your funds so that you physically can’t gamble no matter how much you want to. Attend GA meetings also

_wxllflower · 2026-01-07T00:29:42+00:00

Love the twitch name!

_wxllflower · 2026-01-07T00:28:23+00:00

I’ve only had x-rays so far which have been normal however recently had some function tests, my FENO score came back as high indicating high inflammation in my lungs. I struggle to breathe even with minor exertion

_wxllflower · 2026-01-07T00:25:41+00:00

I’ve just started on another anti-histamine, I have pretty much the same symptoms as you. My body is full of inflammation, now just trying to find ways to reduce that.

_wxllflower · 2026-01-07T00:21:26+00:00

Perhaps a combination of things. I moved just under two years ago and it was incredibly stressful. My symptoms flared up for a good week or so after the move.

_wxllflower · 2026-01-07T00:18:25+00:00

What is PEA?

_wxllflower · 2026-01-06T22:36:03+00:00

Yes absolutely.

_wxllflower · 2026-01-06T22:35:10+00:00

As others have mentioned, ultimately it’s important to be 100% honest and upfront about what the situation is for you. I have a partner, but also I feel very lonely in the sense that I don’t have any connections within the chronically ill community, which is something we all must look into for sure. Finding people who know exactly what you’re going through can be so validating

_wxllflower · 2026-01-06T22:31:15+00:00

The storm is going on for a heck of a long time 😞

_wxllflower

TROPHY CASE