The statement ‘I know what its like I need to take my blue inhaler sometimes’ or ‘I get a cough I know how you feel’ make me and I am sure many others want to scream and tell them they have no idea what it is like.
There are so many things severe asthmatics just want everyone to know. This post is in the same vain as my previous post about what we want Dr’s and the medical staff to understand. This is a global everyone and even other asthmatics, severe asthmatics- anyone can take note of some of these points I have accumulated from various other severe asthmatics.
For me the biggest one is smoke and other air born triggers. It is a big deal, no we are not making a fuss about nothing, even if it is just a small about of smoke or fragrance it can be a huge problem. It really doesn’t have to smell that strong. The only way anyone could possibly understand is when a woman is pregnant an she can become very sensitive to smell and finds strong smells very obscene well this is how we feel with them except just a small whiff will irritate our tubes to the point where we are wheezing, coughing and can often end up in hospital. New Year’s day 2016 I was in intensive care because of second hand cigarette smoke which was across the road from me. It caused that big an issue. And while this is an extreme example it is a very real example. For others is can be strong perfume, aerosols, anything.
I feel so embarrassed when I need to make a fuss about people who have smoked and come back inside with smoke on their clothes- this is enough for tubes to close up, perfume on clothes too. But we shouldn’t feel embarrassed but so many people think we just make a fuss about nothing as they don’t get how serious it can be and they don’t understand how terrifying it is when you can’t breathe and what makes it worse is that it is a very avoidable trigger if only others thought before exposing people who might react to things. It never gets easier to make a fuss and I am sure asthma is not the only condition where people are embarrassed about making a fuss due to factors which can make conditions worse. I hate it when people don’t understand even when I try to explain but I guess you do just get people who choose not to understand and think about themselves and what they want over how others feel which is difficult and its hard but I have come to the conclusion I value my life and health more than these people who choose not to understand.
Often people think they are being kind by covering a bad smell up with fragrances but this is the worst thing and makes things so much worse.
One other topic people brought up was accommodation considerations. For me its about having non feather bedding which is not too much of a problem no a days but as a precaution I go everywhere with my own pillow. But so many people find hotels get grumpy with them when they ask for rooms which are not above the main doors as people smoke outside them, or rooms over looking the main road due to the extra pollution. there are all sorts of things and every severe asthmatic will be different as some prefer cooler rooms other prefer warmer rooms as everyones asthma is different.
Generally Asthma falls into 2 main categories allergic and non allergic (there are many many other subtypes but broadly speaking). What the general public don’t understand is that ye you can be that allergic to something. Pretty much everyone will have seen some sort of allergic reaction but these tend to be milder and will be hives and some itching with perhaps a little bit of swelling but when you have severe asthma and allergies already twitchy airways become even more twitchy an swollen resulting in the worst attacks. So yes you can be that allergic to things.
I recently had a hard time with an allergic reaction which was when I was in hospital, we have no clue what caused the reaction but my asthma was bad and these red, blotchy hives were just spreading all over my body. The nurse and Dr could see it spreading before her eyes. Of course the concern was getting my breathing stabilised but I think it just highlights- yes you can be that allergic to something and it can be totally random.
One of the big things for severe asthmatics is for people to understand how serious asthma is and not all asthma is the same. Everyone is effected by it differently and deals with it differently. It is a very serous condition and I often think people under estimate it. Especially with severe asthma because you couldn’t pick a severe asthmatic out in a crowd unless it was a smoke filled crowd you would see the severe asthmatics all trying to run away but otherwise you can’t tell the difference and this is one of the obstacles we come up against. If you could see inside our airways and see the effect triggers have one us then people I think would be more sympathetic and perhaps understand a bit more that we are not making a fuss for fuss sake but have valid reasons behind it.
There is so much more I could write and a major topic surrounds the spoon theory which I think needs a whole post of its own!