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.
Hugs Daxiemad
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Daxiemad
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You can use the forum in whatever way works for you - everyone deals with illnesses differently, for some it helps to be able to 'off load' about what is happening, for others a more general day to day light hearted approach works.
I think the point you make about 'exisiting' is very true - sometimes we don't realise we are doing this until something happens to bring us back to reality!
I remember someone once saying that 'sympathy is like being in the hole with the person whilst empathy is understanding what it must be like to be in the hole@ I hope that makes some sense!
I am fit and well but boy do I sometimes have the oh woe is me feeling, but good things are always round the corner and the glass is half full, well at least I hope so cos the flipping thing is never full, humour is all around us, even in the strangest places. lets celebrate the fact that we are here and make the most of what we have. I have always said that I must have been a baddun in a previous life and am paying in this life, couldn't wn a raffle if I bought every ticket except one, would rather put a quid in a beggars bowl than buy a lottery ticket, but life is all. take care my friend. xx
There is nothing like being in hospital to concentrate your mind, mainly because there is nothing else to do! You are right that it can be enjoyable in that there is a focus on you, your meds, your needs, etc. And that this attention can be missing from our day to day lives, especially for us older COPDers! I think I am somewhat like you in enjoying positive outlooks but sometimes we need to share the bad too; to look for empathy and reassurance about something. We will each use the site as we need to, and that is how it sould be. I hope you feel better for getting it out there. ((((HUGS)))) xx
We all need down days, how else would we recognise and appreciate the good days? this site is great for unloading in a way that's best for us.
Ah ah, liked the bit about Breath Easy not being your thing. I can understand that because I felt the same, every one is old (I'm 61) anyway once I accepted I was "one of them" I made some good friends.
Life can be harsh Daxiemad but its the only one we've got, it's good that you can be cheerful and positive so much of the time. Take care of your self. ((((HUGS)))) From me too. xx
What a good post and I can fully appreciate what your saying, Sympathy is not what is needed, it is empathy and possibly chance given for me to either work out how to do things in my way at my pace.
I understand what you were saying about breath easy group, but I will not knock them as they helped me get my head round the situation and helped me see there is still life and it aint over yet
I hope you come away with positiveness from hospital and you make some good one to one contacts .
I have found this site useful to find out that how I am feeling is normal, and part of the illness, because the doctors cannot tell you everything
chin up and come back bouncing
xx
Awww didn't know Lottie dog was a dachsund (I get the name now), I had one as a teenager, such cute and intelligent little dogs.
It sounds, Daxie, like you really need that tune-up in RBH, and not just for your chest either. It's a great hospital tho, even the food is good.
I know what you mean about B-E. I went to 2 meetings and everyone just talked about their lungs & how difficult life is. I don't know what I expected but I don't want to talk about that, I want to have a laugh! Also, as you say there are way more people with COPD, but that reflects the population.
I'm 60 mind you, but still 25 in my head. I've got friends of all ages, if someone shares my liberal outlook on life, is kind to their fellow man/creatures, and can crack a joke, lead me to them! Eg the plumber who came to fix my boiler yesterday was 74 but hilarious, a really interesting chap and good fun. On the other hand, I know one or two people in their 30s who are willingly hurtling towards old age, so stuffy are they in their attitudes! I am lucky that I worked until recently so built up a nice group of friends from various jobs.
Another way I found of meeting people is to join a choir. And singing is great for breathing. Just an idea.
Hi Daxiemad I totally understand what you are saying and like stitch I can relate to so much of it. I have done my own rants on here and its great to let off steam like that isn't it?
Everyone needs friends and everyone needs regular human contact face to face. I hope you can get a lot more of it. And please keep posting - you are normal for you and thats good enough. And what is normal anyway?
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