Re: [bronchiectasis-- very much ON topic/

[Guest guest]

It is good not to be on so many things, but it was hard work, and sometimes

still is, because I keep myself so very busy, sometimes do almost forget to

breath.

I often notice it when I have a full day booked with committments to

meetings, as they are all one after the other usually and middle ones tend

to be 40 minutes away, but so many road works you need 15 mins at least each

side of aapt etc.

Thats when I get crook and forget to stop and just gather self .

I start the day with 3 puffs on puffer, do a meeting , but if its upstairs,

wll I have to hit the puffer again, and wait till last to have my turn, all

know my illnesses , so work in with me, If they see I,m late there is a

bottle or glass of water waiting and they move ahead .

But then I have to drop old chap off and hit the road again, traffic probs

means breathless ness, and if there is a build up of traffic, as much as I

need the window down I have to close it, fumes, petrol, diesel etc, then,

once parked have to go to a site central to find out where the meeting is

being held, sometimes completely off hospital site, so then another rush,

puff puff etc.

But I cannot take meds, and that in itself scares me, I have to be so

cautious and never let my guard down, especially when meetings are in the

general hospital, bugs etc.

I get so scared if someone is locked in a meeting room, no windows etc, and

someones coughing, sneezing, sore throat etc.

Because I just cannot get crook.

I cannot have Iv,s etc, and so I really get stressed at that, can,t ward

things off with a quick fix ab, I just have to truly hit the garlic doubly

and the onions, and protein, however protein is an enemy to arthritis, so

it goes on and on.

So yes I,m luchy short term, but long term can be really stressful.

On the way home from anything I have been to or done, I do pull over and

just sit and do breathing excersises etc, then get out and do a few genle

arm raiers etc.

Don,t have time to stop on the way, but I am conscious of breathing techs

every minute of my day

I once did have a very long and very heavy battle with pred, such high doses

put on 3 1/2 stone in 10 days, then heart failure etc.

Its a rotten drug, but yes when things are life or death you have no choice,

thats why I must take care 24x7 365 days.

And my family and friends really do understand, so do all community of

workers i work with, even the clients.

Stay away from their group to protect me.

Its a long hard battle bronch and asthma, as they change so often, so many

triggers, good one minute, and only have to get a whiff of something, or ben

over or rush, and could nbe in hospital within next hr.

I hope you can come down off it just enough to be able to walk or swim even

wade through water.

When I was at crisis point, just going to the heated pool, and wading

excersises, with arms and lega across chest excersises etc, then 2 good

long, very slow but longer each day, helps get rid of that excess.

But it takes a long time to get completely rid of it.

Most never do.

Anyway, nancy, I am so happy you don,t mind me putting the photos in my

album, called " Global, friendly family of bronchs "

No other info just dates if they are there and date I entered.

i have another folder with age, and related illnesses etc, and words of

interest, broken down, so can keep up to date.

Just a big A 4 journal beside computer too, with countries, and names of

people beside, geographical, helps me feel like I sort of know where in the

world my friends are.

I aim to colour code the hard copy with each persons favourite colour.

with coloured strips or dots.

Just my own thing, like I have with my herbs and spice potions, I know

people don,t like those words, but they are just fun pet things my family

say to me.

That and special recipes, are all here with my local community services

directory, under where the keyboard should be, on the slide out shelf.

Yes I,ve not had a very happy weekend at all, but Lee and Bunny cheered me

up.

But cannot wait to start another day, week.

My home probs, the groups interuptions, lets hope in the next 47 minutes

will begin a turnaround.

I hope you too feel better tomorrw and will be waiting for progrss report.

I have, t forgotten yours and Lees booklets, just so upset, I didn,t

leave the house, have Tuesday half a day free, so will have them on their

way on Tuesday by mid afternoon mail.

Must close, just about stuck to the seat, ( nice ergonomic healthy ho, ho

ho, swivel chair) I also have a specially designed foot rest to keep my feet

and calves mobile, suffer with feet and knees swelling etc.

Thinking of you and hope you can get enough breath to do tiny bits of

excersise to help keep moving the fluid , so swelling can subside even just

a little.

Make sure whil on such high doses of pred to yes drink , keep the fluids up,

but sensibly, make sure you get rid of at least what you put in and a cup or

two more.

Are you on fluid tabs, and if so, are your potassium lvele Ok.

Ask your doc about the amount of sulphar you have in your meds etc too.

All go habd in hand with fluid retention and side effects from pred and

other steroids like ventolin etc.

Have they had you on theo, too, that generally hepls to get gunk up, and

loosen all, so not so tight, tigh all oover.

I was tight all around my entire swollen body, felt almost like I was

embalmed in bandages, and was having all air squeezed from every circle,

just like picturing a fir tree with too much too tightly pulled decorations

etc, about to burst.

I,m sorry for the long email, I just can almost see and feel how you are

right now.

Please take care, I say prayers for all of us with my family, so prayers are

with you too, ( hope I don,t get blasted for saying that too.

I cannot help from giving my love,

Sandy