Hi everyone, I'm here after quite a revelation over the past few weeks, which unfortunately, like so much in life is incredibly complicated. I was heavily abused from birth onwards in many forms, by different people so all of this gets confusing. I was literally told that I was attention seeking and lazy for being unable to breathe or gagging and choking from cold air, or exercise, or being too sensitive to certain smells and being mocked by adult family members. And was even told, when I was up in my room and other people were down stairs, to not breathe so loudly as it was annoying and I was just doing it for attention. And similarly when people were in the room with me, I was criticised for breathing in an ugly way. This is even before you get into actual abuse. I came to not believe I had asthma as a kid who lived two doors down would regularly be hospitalised regularly for extreme asthma attacks that he'd literally die from if he didn't go in, which is the beginning of two decades of: "I must just have some other normal reason I can't breathe" and genuinely believing that I was unfit, lazy and an attention seeker. It doesn't help that my father was grooming me and taught me that I was crazy and a liar and no one would ever believe me.
In my teen years there was a few exceptions, collapsing on the floor coughing choking and wheezing on a 1.5km winter out door run after less than a few hundred meters, a girl sneaked me her asthma pump, which after hesitation, I tried and it miraculously helped, to get point where I could finish, even if it was only by walking otherwise the air would set it off again. I tried seeing a doctor but he said because I was a saxophonist and had a built a good lung capacity through years of training, I couldn't have asthma. A year or so later, finally an ambulance was called out because I was unable to catch my breath at all at home and I was pale and shaking and horribly not ok, that whole thing was a bit of a blur, but the medic said having a large lung capacity had nothing to do with having asthma and I should see a doctor, several weeks later I finally got to see them, and he repeated the whole thing, saying I wasn't wheezing from listening to my chest and I was, again, making it up for attention and I was fine.
So for the next decade and a half, I have been increasingly more avoidant of everything, believing that I was so unfit I would virtually pass out, losing my vision and having to take days to recover, with anything except for swimming, possibly because its so low impact. I started trying to trick my body, by breathing out as much as possible and holding it until I felt I was going to pass out, just so that I could feel something when I breathed in and I would be ok.
After this I resigned myself to being unable and realised I would never be able to do most things without feeling like I was exhausted and needed to sleep for weeks. People told me it was depression that my chest telt so crushed and anxiety when I couldn't breathe. I mean I have mental health problems from trauma (DID, cPTSD and depression), so I believed it, but even that reached a point, where even on my best mental health days, I would go down to make a morning cup of tea and have to lie on the floor, flat, because it felt like someone was standing on my chest and I could neither move nor breathe. I have been begging my doctor to check and recheck my thyroid because I shouldn't be so tired I can't breathe. It's been a nightmare. But one I seem to be waking up from.
A few weeks ago, I'd had to get up to go to the doctors and was rushing, I felt too hot, like my clothes were tight around my neck and I needed fresh air, I made some toast before promptly giving it away, unable to eat it, I left for the doctors and sat in the waiting room complaining about the heat and the stuffy air to my mum, but I just wanted the appointment over so I could go and lay down and hope for this to pass like usual. The appointment went, and I got home and crashed but it didn't get any better. Later at a family meal time, I couldn't eat at all, gasping in between mouthfuls, worried I was going to choke, which I do frequently if I'm struggling to breathe and eat at the same time. It was then, when my sibling said, it looks like you're having an asthma attack, things started to happen. And being diagnosed with asthma recently, they told me to to just try using their inhaler, even if it was nearly empty. Desperate, I tried and that puff felt like a jolt of electricity opening my chest and lifting my shoulders, and albeit short lived relief. I could catch my breath a bit and finished dinner, but later it built up and I struggled throughout the rest of the night and just collapsed in bed and held on tight.
The next day, I still felt terrible and weak and quite frankly terrified that it would come back again, I went to see the doctor in an emergency who did my very first peak flow, which had a reading of 220, but I wasn't wheezing, she said it didn't confirm anything and told me to book a spirometry test and go home. I did but I kept getting worse, that very night I had so much coughing and wheezing, which I began to record, every single time it came back, as it continued every few hours.
Two days later, I went out going out on good Friday to buy my fiancé and Easter egg, I begged my mum to take me into boots to ask for advice, they told me to straight to the walk in emergency clinic round the corner and I did. I told him I didn't want to be a nuisance over Easter, or to call an ambulance but I was worried it was going that way and I didn't think I could wait And for the *FIRST* time in my life someone actually listened to me about me breathing, he asked family history, listened to my chest. Hea asked my mum if I wheezes or had problems as a kid but didn't know enough about our family dynamic when our dad was around all that time ago I showed him the audios and he laughed about how terrible the wheeze was and I did the right thing in recording it to finally stand up for my self. He immediately gave me a ventolin pump, mask and spacer (the pharmacy didn't have the mask, but I'm coping fine without) and said I would need to go back to the doctors for a steroidal pump and I should definitely have the spirometry.
The relief came from the ventolin, euphoric, like my body was crying for it (or for the air it enabled me to breathe) again and again and each day I needed it less until only when specific things set my breathing off. But when they did I was reduced to happy tears in relief that it just went away, it was immense relief. I literally want to find that doctor out and write to him, thanking him for doing what feels like saving my life, after as little as one day, and ever day since for more than a week. I literally am so immensely grateful.
Literally after that first 4-5 days of taking the ventolin, it's settling down, I've been better than I can remember and I feel like I can do and be more. I'm relieved and grateful beyond belief. I am worried I'm taking too much though and I have a lot of questions about it. The doctor said 1-2 puffs normally, but to take 6-8 during an attack before I'd need to call and ambulance.
On each day I've been logging what I've used and if I've known, what caused it, I'm actually going to get a diary to keep logging this, but yes, I am concerned about how much I needed if though its dramatically decreased overall (6, 8, 4, 3, 4, 4, 0, 0, 0, 0, 3).
I'm learning a lot, quickly but it's still all daunting. I've seen other people in asthma attacks, it looks the exact same, and I'm now disappointed I've been putting up with this for so, so long, but I've also made great progress.
All this said I'm now at a point where I'm really scared about the spirometry this Thursday, firstly not knowing what will happen much (though I did watch a video) though mostly not showing anything and going back to square one. I don't want to fix the results, nor do I know if that's possible, but I'm terrified I'll be kind of ok when I go in and it won't show up like my shy wheezing that no one ever believed I had. Or being told I have a good lung capacity, so I'm fine, just because I'm ok that day. Or being silenced. My other sibling was given a peak flow meter to record her breathing of a longer period of time and I believe at least I could show the huge variation in my experiences and give a more valid picture, but I'm also terrified that no one will believe anything I have to say, but I also would like the spirometry to validate everything too. I'm just so scared of them taking this inhaler or saying it doesn't work when it does, it's saving my life. But overall I'm relieved I'm being tested finally. I'm just anxious about I guess.
But yes, there's my terribly long introduction (and I still cut a hell of a lot out!) but hi, and thank you so much for reading and making it all the way down!
I had a tricky path to diagnosis though thankfully not with all yiu have had as well, so happy to help. I also find it helps to know that the doctor is not always right - it helps me to know I am not crazy. I do not even have any mental health issues or a history of anything like you have had but doctors can be very dismissive when they don't understand, and it helps to know that it is their problem and you are not being unreasonable or a hypochondriac. I had to learn this myself as it does sink into your head, and I imagine much more so with your family history.
It really did! Thank you for understanding and explaining, I'm sorry for everything you've been through too, and that now you have that diagnosis you are being treated better. The daft thing is I know when doctors blow off other people's symptoms but I'm not always able to tell about this for myself, but it is useful to remember. I know I am worried about aspects of my health, but only where they are clearly not ok, and I tend to let it get awful before I actually confront the issue, but no, I'm not a hypochondriac, even if I'm not the most mentally sound person otherwise. 
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