Funny how a change of environment makes you realise that the way you are living isn't normal. To the outside world, maybe to you guys on here I am a happy bouncing mad cap nutter of woman, whose life revolves around dogs and in particular my beloved Dachshund Lottie.
Whilst I have always loved my own space at home, I also adore like minded people, those who care about the environment, the vulnerable and of course doggy lovers. Not working makes it difficult to strike up new friendships, and very often you find yourself being friendly with those who you have something in common with. So of course I have a varied list of friends mostly online ones who have some form of respiratory illness, I tend to go for the ones who are quite positive despite the everyday struggles that respiratory illness throws at them, and have interesting hobbies etc. For example one is an amateur artist, another works in biodiversity for a Wildlife Trust, I share an interest with both these people because I love art and too used to work for a Wildlife Trust.
Rightly or wrongly I steer clear of those who totally self indulge in their illness, for me it is not healthy and I have to live with the difficulties of my own condition without reading that some other Asthmatic has got filthy looks for using a neb on a train (my reaction is deal with it, that's life, it is only an issue if you make it one). So has a consequence I don't open up to the online world about how difficult life is at home, because I believe that we all deep down know what it is like to live with breathlessness, pain and the other associated problems, my failing here though is that because I don't open up to you guys I don't open up to anyone. I look at others and how their lives are complicated with partnership splits, study issues, money problems etc and think I am okay I have spare time to call my own, reasonable income (not rich but can manage), no children to worry about etc.
In the few days I have been at the Royal Brompton Hospital I have had more one to one contact that is about my needs etc, than I have had for six months or more. I have real human contact coming out of my ears. I am able to have intelligent real conversation! And all of sudden I have realised that for the last 12 months or more I have just been existing. My breathlessness and reactions in environments I cannot control are trapping me, making appointments and arrangements to do just achieve everyday life are becoming increasingly more difficult.
Some people say well perhaps I need to go out and do some voluntary work extend my social circles, and whilst I totally agree, but when even a trip to the supermarket can be fraught with difficulties eg: the woman who feels the need to spray herself so liberally with perfume that she smells like a can of Frebreeze. Finding a voluntary post where I am not going to be ill as a result is so difficult. Even my degree studies whilst interesting and challenging are not doing it for we right now, because I cannot explore the issues I am studying with other students again because of my health issues.
Being linked to an online community was my saving grace when I am really ill, it kept me sane I didn't feel isolated, I now feel it is often the only link I have with human contact.
My local Breathe Easy group is not for me, they are all at least 30 years my senior and COPDers (not disrespect to you guys) but being Brittle Asthmatic, severely allergic and 41 my social needs are very different.
For some time I have felt not depressed just out of sorts with the world, my health has dominated every waking moment, I have no false hope about the IVs I am on working for long after I get off them, twenties minutes off them now and already I can see how poorly I am managing. Later it is off to the Gym to find out how bad things really have become, have already discovered that my PFs are dropping dramatically just by having a shower.
No replies about feeling sorry, empathy fine, but sympathies won't change anything, I have the ability to feel sorry for myself without anyone else doing it, and that is not what I want. It is just good right now to admit and realise that existence is not enough to enjoy good health.
Cheers for reading guys, sorry it isn't bouncy and madcap but I needed to get this out of my system.