In many countries it is a natural assumption that you are just a normal human being so people always say things not knowing.
For me when people say something i find it funny and a sort of compliment as they are never assuming that i have an illness.
I always giggle to myself when Someones says something and I make them feel guilty by dropping the old "its because I have an illness" That usually stops them in their tracks and they turn immediately apologetic, I always laugh and say its okay dont worry im used to it and its nice to know im sort of healthy enough that people dont notice it.
Its made me realise that all of us in life say many things before we think of what we are saying.
Its the way the world has worked for many years and theres no doubt its also got one or two people in trouble in general and in famous circles.
Im of course one of these people that does drop my foot in it regularly.
For example I recently said something to a friend of mine not knowing that her and her husband had recently split up (Head in sand moment and to that person i am very sorry)
But
It is because i am that type of person that im not afraid to say how i feel to stick my neck out and to maybe upset the odd person or two especially when it comes to my health. I am who I am and that wont change.
Im never afraid to ask THAT question
To query that decision
Im a very good observer and if I think somethings not right or heading in the wrong direction with my health Im straight into the doctor saying why and what and how come and if I dont think its working.
Whilst having my last hospital treatment I noticed that something wasnt right I was exhausted, very sick, running fevers and generally very unwell. I had bloods done x rays doctors coming to examine me. After 3 days of this and 4 blood samples taken I finally had enough. I had pretty much worked out what was wrong and explained this to the weekend doctors who seemed to ignore me or think i was being stupid. I refused more blood samples because they still hadnt got the results from the first lot taken so what was the point in taking anymore.
When monday arrived after a weekend of total agony sweating being sick and very ill. The doctors from my cf team came to see me. They firstly apologised for the way I had been treated over the course of the weekend and confirmed as I had been telling them 3 days previously that I had indeed had an allergic reaction to the drugs and they would be stopping them immediately and changing to new drugs.
The doctor explained that the usual signs of a reaction had not happened on this occasion and I had reacted in a way she had not seen from a cfer previously. And finally she thanked me for being strong worded in my response over the previous 3 days as it was of course no1 priority to improve my health not make it worse and I had every right to refuse treatment as I was right in noticing that it was indeed an allergic reaction to the drugs and that a lesson had been learnt from my experience.
I have to say I get on well with the cf team who look after me as there is no BS no lies or sugar coating. I like to be told straight If im doing something wrong or something has gone wrong I dont want lies I just want the straight facts and then hard lines on what to do. I know others who are not so open to the truth and would rather not know and just let the doctors sort them out.
It just shows that sometimes speaking up and not holding back can make a difference.
Its just a shame that some of the people I know with CF put too much trust in their doctors and dont listen to their own bodies and speak up.
My doctors always say to me no one knows how your feeling or how your body is better than yourself
its your life in your hands essentially and if you dont look out for it who else will
People always say no 1 come first.
I also think this is something that the world in general lack. Self respect and a will to look after no1
After all if you dont look out for no1, how else will you be able to look out for others??
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