A thought: Sitting having a leisurely... - Lung Conditions C...

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A thought

Suzy6 profile image
55 Replies

Sitting having a leisurely cup of tea, no hustle bustle, weekend no work, did people with COPD years ago before computers suffer even more than us. No wonderful communications with understanding people, no encouragement, help and friendship as on here. I felt very isolated until I found this forum they wouldn't have been able to experience the closeness understanding friendship of hands across the miles. Hooray for technology, sometimes baffling, anger inducing, intrusive but wonderful .

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Suzy6
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newlands profile image
newlands

I totally agree i have made so many friends since joining the group, have a good

weekend Dorothyxxxx

Suzy6 profile image
Suzy6 in reply to newlands

Thank you. You have a good weekend too Dorothyxx

creakykneed profile image
creakykneed

I don't know what I would do without it to be honest. For the sanctuary of this forum of course, but also because the good old internet that enabled me to fix my own washing machine!

Well, if the new circuit board arrives I can, but the point is I was able to achieve something when there is so much I cannot do - you have to take the successes from anywhere you can. X

Suzy6 profile image
Suzy6

Hi, I'm just about to check when my MOT expires, I know its June, but misplaced it. not unusual for me. so the good old internet will help to keep me legal. We were able .to repair my Tumble Dryer with help from the internet. Hope your circuit board arrives soon, I go loopy with no washing machine. Hate launderettes and don't like to burden friends or family. xx

cofdrop-UK profile image
cofdrop-UK

Interesting thought Suzy. I believe it was much more isolating for folks with all kinds of respiratory conditions and indeed all other chronic diseases before specialist forums. For many years after the start of the NHS we relied totally on the medics and muddled our way through gaining what information we could along the way.

I know there is a lot of duff info on t'intrnet but I often think just how lucky we are to be able to gain instant knowledge and advice from people who really understand. Good docs understand the ins and outs of our conditions but only we know how it actually feels and can therefore have empathy. To be able to know pretty quickly what we should expect with regard to medics and treatment and ways in which we can help ourselves is invaluable. So too is the friendships, support and laughter. Also only those with resp problems and medics in the resp area understand what we are on about when we talk about particular bugs or treatments.

So I for one cherish this forum and all it's members and those who make it possible, and I now feel much less isolated.

cx

Suzy6 profile image
Suzy6 in reply to cofdrop-UK

Hi coughdrop, I think I would still be muddling my way through if it wasn't for this forum. Enjoyed reading your post.

huggs profile image
huggs

That's a great thought provoking question Suzy. Years ago people did not even know what a computer was, and when the first one was built it filled a whole room! It also took several people to work it. How we have advanced! Although back then people did not have the internet, access to instant information and getting in touch with people in similar conditions to themselves there was a different sort of community then. Families lived closer together and .not scattered all over the world or the country, so I daresay they would get the support from each other. Today, sadly the support from families does not always happen for the reasons I have mentioned, as well as a lot of people live life at a manic pace in terms of work etc.

There is no doubt in my mind however, that today we are extremely fortunate in having access to forums such as this for all kinds of conditions and diseases. I have said this before, that I have learned more about my own conditions and have had much more support on here, than from any doctor. We have never met, but I feel I have gained a lot of friends that I instantly was comfortable with. The instant understanding from a stranger (at first) is so wonderful and heart warming, and there are many of you who I would love to meet in person and not just through the written word. I can just picture us all together having a huge party and being able to experience the closeness in person with real hugs and cuddles.

I agree with you Suzy, hooray for the internet. There is a truly evil and dark side to it, but the way we use it as a tool for learning, communicating and reaching out to each other is how it is meant to be used. See, you have got me waffling again. Good point Suzy.

Take care and I hope you are well. I hope everyone has a great weekend and LOF (new abbreviation!) meaning lots of fun!!!! hugs xxxx

Suzy6 profile image
Suzy6 in reply to huggs

Ha Ha waffle away I always enjoy your waffle, which in fact is not waffle. It is always well thought out and well written. It would be great to have a big party. I have pictures in my mind of people from their posts and it would be interesting too find out if I'm right. xx

huggs profile image
huggs in reply to Suzy6

Hi Suzy,

Thanks for liking my waffling. I am glad somebody does! I liked your question Suzy, and its good to look deep into yourself and the world in general and how things are perceived.

I hope you are quite well, or I really mean very well. Now while you are here, can I ask you a favour. Do you recall a few days ago I posted a request about abbreviations and their meanings. Well, the response was well beyond what I expected and Stone kindly agreed to compile a list. I had been thinking along the lines of contacting a Modetator or someone to see if it could be put on the website. Then qbjb, contacted me to say that he had contacted the Administrator to ask if this list could be a permanent feature on the right side of the page, where everyone could see it easily. So, then I thought," well why leave it at one email." I then emailed Michael the Administrator, and as you can imagine it was a very detailed email, outlining my reasons for the request, benefits to everyone and education about others pulmonary disorders. Would you mind doing the same thing and contacting Uncle Michael and giving your support to our idea. I think the more emails he gets the more impact the request will have. The more the merrier so to speak. So far I have only asked around 4 people (because I fell asleep), but they have done it. Your support will be welcomed by us all. Thank you Suzy.

Take care, and keep in touch. hugs xx

Suzy6 profile image
Suzy6 in reply to huggs

I certainly will huggs. It is a good idea. I will do it tomorrow as it is way past my bedtime. Never thought the day would come when I would say that. I'm off to bed now sleep well huggs. Hope your neck is improved tomorrow. I say I will do it tomorrow as my mind isn't clear enough at the moment not to make a hash of it. xx

huggs profile image
huggs in reply to Suzy6

Thanks a million Suzy, it is much appreciated. Sleep well. hugs xxxx

jimmyw123 profile image
jimmyw123

hi suzie, i hope your keeping well, yes the wonder of today,s technology,, what a great post suzie, most of the younger folks take this for granted now, it is great to be able to come on-line when you want, get the answers you need when you want, and off course be part of a wonderful community,especially for folks the likes of me who live on there own,,, the "good old days" were really not quite as good as we would like to think [in some respects lol] in my time we had no computers,we were lucky to have an 8 inch t,v,,[with one channel, the bbc.] and every thing was done in writing then, posting a letter was the only communication, if you were lucky enough to own a kodak camera, you needed to buy a spool, to take you photos, then wait three days for the chemist to have the photos ready, [many of the photos had the feet or head missing , mined you mine looked better with the head missing:) ] , yes suzie, your last sentence sums things up perfectly,, kindest regards jimmy xxx

Suzy6 profile image
Suzy6 in reply to jimmyw123

Hi Jimmy, thank you I'm well. I remember those days well. We didn't have a television till I was 15 and as you say photos with head or feet missing or fuzzy because people moved or a shaky hand. We just had an old I think it was a Box Brownie. My parents didn't have a phone until I had married and moved away. Take care Jimmy xx

jimmyw123 profile image
jimmyw123 in reply to Suzy6

yes that was exactly the same with me lol,, my goodness me, you have really took my mind back,,, the brownie camera,,ha ha, mind you they were the "latest" at the time:),, you look after yourself suzie, regards jimmy xxx,

pollyjj profile image
pollyjj

My father had Empyhsema back in the 1980's, no oxygen then just seemed to be steroids don't remember him have antibiotics either but I suppose he must have.

He loved working on his allotments but towards the end he could hardly step out into his garden. There was no help at all and he suffered greatly.

Little did I know then that I would end up with the same but I am lucky to have the support of a wonderful respiratory team and of course everyone on here who without I would certainly not be as active as I am today, not forgetting my wonderful family as well.

polly xx

Suzy6 profile image
Suzy6 in reply to pollyjj

Oh Polly it must have been dreadful to see your father suffer. Makes you realise how lucky we are with our Medical Teams and this Forum. Keep well. xx

What a lovely post Suzy. Thank you for that. xx

Suzy6 profile image
Suzy6 in reply to

Thanks coughalot. Hope you have had this glorious weather where you are today and enjoyed it. Take carexx

Louisiana profile image
Louisiana

All so true. I have only just finished the rehab clinic, from which I learned a lot, and I was given the card for BLF - it took me a few weeks to take notice of it. I am so glad I gave it a try! A friend gave me her old computer a few years ago and I know nothing about them....I said I would just use it as a typewriter and somehow I have figured out how to send emails, look things up and pay my bills...i still panic when a question comes up on the screen as I never understand what it means :( When I think of how far everything has come.....the medical progress during the past two decades is incredible. Years ago if you had a heart attack you stayed in bed until y ou felt better, and if you had a lung disease you just coughed a lot and suffered in the extreme. ....my grandchildren would never be able to even imagine it! Here's to the BLF group :)

Suzy6 profile image
Suzy6 in reply to Louisiana

Hi Liousiana, how times have changed. It is so rewarding when you start to master a computer isn't it. My first computer I used solely for Accounts, which I taught myself all the way through to Trial Balance etc. Then we purchased one for home and I was away. xx

Louisiana profile image
Louisiana in reply to Suzy6

wow! :)

cofdrop-UK profile image
cofdrop-UK

In the early days of the NHS we had Penicillin injections and boy did they string. We had no inhaler or PEP gadgets for a long time. Consequently most of my childhood was spent equally between hospital and home. We were in for weeks (sometimes going home at weekends). I certainly wouldn't say we were left to suffer in the extreme - they did their best with what was known and available. I wouldn't be here for a start if it wasn't for the medical care and that of my dear Mum who had to fight my corner initially - harder to do in those days. Postural draining with percussion were the order of the day (which I still find the most efficient clearance for me) and antibiotic therapy. Even when home I caught 2 buses twice a week to go for physio from being about 11.

Schooling was interrupted and the teacher in the hospital school was dreadful telling us all about her daughters latest ballet medals. No wonder I'm thick as two short planks. Think the lack of education was my biggest regret. Tried to do a lot of adult courses but I don't think you can make up for all those years. You only had 1 hour visiting and the dreaded bell would go - so I am so glad now children can have parents there and my daughter visited a school in a hospital in London when she was a pshe teaching advisor and rang me to tell me how good the schooling was, as she knew it is a subject close to my heart.

Well that's the past and tests (before CT scans) which I thought although well meant were barbaric, especially for a child are no longer and tests are much easier to tolerate and research and treatments have come on leaps and bounds and I hope will continue to do so, certainly for the upcoming generation. As long as they don't throw the baby out with the bathwater.

I have written a piece for a guy who is writing a book on the history of Seacroft Hospital and I think I put a short version of it some time ago on here. Apparently the long Florence Nightingale wards which have been derelict now for years have been sold off for housing, but I still go to the main outpatients and it does make me quite nostalgic.. It wasn't like today. I knew I would have the same doctor, same nursing sister, physio and porter who used to take us down every day to physio.

OMG just realised I am such an old bag banging on about the old days - put me down quick!

cx

jackie50 profile image
jackie50 in reply to cofdrop-UK

wow that is some information, never knew hospital schooling existed.

reading the way you have written, please don't say your thick(yes I know I am very sensitive in this area) .....

Suzy6 profile image
Suzy6 in reply to cofdrop-UK

Put you down cofdrop. no way. That was such an interesting post I learnt much from it. I was lucky I had a very healthy childhood and life until about 2 years ago. Will your blog on the history of Seacroft Hospital be in the book? xx

cofdrop-UK profile image
cofdrop-UK in reply to Suzy6

Not sure Suzy. He emailed me what was more of a booklet really, but completed, on an old mental hospital around this area. The building was used at a later date for filming the series Bodies. It was really interesting. He works at Jimmys but he and a porter from Seacroft are collecting archive material.

cx

Suzy6 profile image
Suzy6 in reply to cofdrop-UK

Hello cofdrop is this the Seacroft Hospital you were attending as a child

thecitytalking.com/leeds-ro.... It looks really interesting. So many old interesting buildings are being sold off for development such a shame. My Husband likes to disappear down alleyways between shops and other places as he likes to find the old buildings at the back. I am going to research further it has caught my interest now. As for being uneducated I totally disagree. I hardly missed any schooling but like my husband whose schooling was interrupted during the war and having to leave at 14 due to family finances you both shame me xx

cofdrop-UK profile image
cofdrop-UK in reply to Suzy6

It is sweet of you to say Suzy but I truly do not feel I ever reached my full potential.

Well sweetheart I was thrilled to see your post. I found it really interesting, so thank you. The site belongs to Leodis - they have lots of 'photos of many areas of Leeds and take 'photos when places are being demolished, as with the house where I was born - a terraced house with communal toilets at the end of the road. I was born in the downstairs room (can you imagine - my poor Mum). We moved when I was 3 because of my ill health and the houses were demolished in 1961 during slum clearance. The house backing onto our was a synagogue and the Irish (my dad) and the Jewish community started out in that area in Leeds.

leodis.org/display.aspx?res...

So this is not actually the guy who has quite a bit of info, some of which is similar. I have the original of the photo of the kids sat on the docs car. I think originally we all had one and I think it would have been taken by Miss Peat the physio - she took lots of piccies at Christmas parties etc. OMG I had bugger all going for me did I - poor little ugly duckling and dodgy lungs to boot! I did let Leodis have the pic but not the copyright.

I was so thrilled to see the tramlines and can remember going to SH by tram. Also I know the heater in the centre of the ward was supposedly 1904 but I have been in a ward (maybe not that particular hospital as I did the rounds - possible Wharfedale) where they had similar heating.

The clocktower is a bit of a landmark and hopefully will remain so.

Thank you again Suzy - if you find anymore stuff out I would be delighted to know.

leodis.net/display.aspx?res...

Love Sue x

Suzy6 profile image
Suzy6 in reply to cofdrop-UK

Mt husband definitely didn't reach his full potential and I can believe you didn't also.

Mt Dad was Irish came to England when he was two. He came from County Mayo.

Times were hard then and your poor Mum and my Mum probably had a struggle. I often lecture myself when I have had a moan about my lot in life. My Mum had 5 children worked full time managed very well without a fridge, freezer, washing machine etc all things I take for granted.

I was an ugly duckling, I was crossed eyed and wore NHS glasses with a patch first on one eye for so long then the other and that went on for a number of years. Did the trick though.

I remember Trams this link shows the old and new trams in Croydon. I certainly remember the old ones.

google.co.uk/search?q=croyd...

All these photos of times gone by I just love.

Don't let them demolish the Clocktower.

I loved this one but it had to be demolished for the increasing traffic.

ideal-homes.org.uk/bromley/...

If I find anymore on Seacroft will post to you.

Take care stay well xx

cofdrop-UK profile image
cofdrop-UK in reply to Suzy6

My goodness me Suzy I think we may turn out to be twins. My dad was a Mayo man too, from Crossmolina - my Mum was a Yorkshire lass.

You are so right it must have been such a struggle for our Mums. I often hear how that generation of mums staying at home, but working class mums like ours had to go out to work. Your Mum had plenty on her plate, working and looking after 5 kids. My own Mum worked in the evenings at the post office sorting office, because she could be home when I was off school ill. I know it wasn't my fault, but I feel bad about it, as she also had to trail up the hospital to see me. She also had my sister to look after and as you say no mod cons, boilers and (dolly blue) and wringers.

I had an eye patch too - looked bonnier still!

What a shame about the water tower - beautiful building. I don't think they can touch the Seacroft clocktower as it is Grade II listed.

Thank you for the historical piccies - really interesting. Ahh trams - always ran on time. Thought the one with the Dreary Fail advert on the side was interesting.

Take care hun. xxx

Suzy6 profile image
Suzy6 in reply to cofdrop-UK

You take care too cofdrop. Yes we could be twins. Small world isn't it. Tired tonight off to bed early in a few minutes. Sweet dreams sleep well.

jimmyw123 profile image
jimmyw123 in reply to cofdrop-UK

:) :) well done cof, loved reading your posts,,, jimmy xx

cofdrop-UK profile image
cofdrop-UK in reply to jimmyw123

Awe thank you jimmy sweetheart. :-)

cx

jimmyw123 profile image
jimmyw123 in reply to cofdrop-UK

:) ive never been called sweetheart in a long time, youve made my day cof. lol,,jimmy xxx

good post suzy o very true have a nice weekend :) :) xxx

Suzy6 profile image
Suzy6 in reply to

Thanks twiceshy, yes I had a good weekend thanks. Hope you did too. xx

katieoxo60 profile image
katieoxo60

Oh so true Suzy6, what did we ever do before computers, it's opened up a whole new world of companionship and support. The weather is good for tomorrow so have a good weekend.

Suzy6 profile image
Suzy6 in reply to katieoxo60

Hello katie, you were right the weather today has been wonderful. Computers certainly broaden peoples horizons and help with friendship and knowledge. So many good things have come from technology including great leaps in medical equipment. Hope you had a good weekend. xx

katieoxo60 profile image
katieoxo60 in reply to Suzy6

Hi suzy6, with the good weather still around today I managed a little gardening but probably suffer for it tomorrow, but it was lovely out in the fresh air. Back for acupuncture on Monday. Had a friendship group AGM meeting on Saturday so was busy most of the day. Hope you had a pleasant weekend enjoy the week to come cross fingers for sunshine xx

Suzy6 profile image
Suzy6 in reply to katieoxo60

Good luck with the acupuncture tomorrow, braver than me. I don't think I could have it. You achieved more than me katie, well done. I had a lazy day, just kept feeding the washing machine and reading. I should have been out in the garden it needs it. Hope you don't suffer to much. Top marks for being active and in the fresh air.xx

dukes profile image
dukes

I can still remember seeing my dad, when I was at junior school, having to stop at the end of our road and lean against the wall gasping to get his breath back every night on his way home from the station.

He worked at ‘T, Walls & Sons’ in the ‘cold room’ (of all places) until his forced retirement in summer of 1952.

He had always put his chest problems down to his long service in the Royal Navy and much time spent in the sea waiting to be rescued, As far as I can remember he was never on any medication for his ‘bronchial condition’ or even saw a doctor.

He died the same year 1952, on Boxing Day in hospital aged 52 from a heart attack brought on by Bronchial Pneumonia after being rushed to hospital; I was 12 years old.

Times were very hard then and sympathy short on the ground, you virtually worked until you dropped and had to accept it. How fortunate we all are today that things have moved on !

Suzy6 profile image
Suzy6 in reply to dukes

Oh dukes your poor dad and how awful for you so young to have seen him suffer. You are right times were hard then and they just had to get on with it. We are so fortunate that things have come on in leaps and bounds. xx

Offcut profile image
Offcut

Back in the day there were social clubs and affordable pubs were people of all ages would meet and greet. Many a time at the bus stop were many world issues discussed with complete strangers and probably never see each other again. But never to afraid to speak in case they take offence. My early years doctor admitted he treated asthma suffers with Valium as it was believed to be a nervous condition. ( As he emptied the runes on the mat and slaughtered a chicken)

My first computer connected to BBS for info and then a thing called Netscape Navigator came out and changed the world for me. Dial up was so slow 28 k and cost a fortune. I was the second private address in Coventry to have Broadband 512k down 256k up at £29.99 a month I a now connected at 32mb down 12 mb up £18.00 a month.

Forums are the new pubs and bus stops just a shame we do not meet each other! There's always Skype ( don't want to scare the kids :) )

Suzy6 profile image
Suzy6 in reply to Offcut

Yes forums are the new pubs and bus stops offcut without moving out of your house. I'm sure you wouldn't scare the kids on Skype says she who wont download it for that reason. Sometimes I slump in dressing gown and ungroomed in front of my computer. So I wouldn't dare do it.xx

Offcut profile image
Offcut in reply to Suzy6

You can buy web cams very cheaply and only have it focused on the face or your favorite picture? There is a product free download called Teamspeak that allows you to talk to more than one person used in online gaming a lot but is open for lots of uses.

Suzy6 profile image
Suzy6 in reply to Offcut

Good morning offcut, I think I might download Skype sometime. Teamspeak might be good for me at work. If I pluck up courage I will tell you. xx

helingmic profile image
helingmic

Suzy, I so love my encounter on this forum. I think it's therapeutic!

Suzy6 profile image
Suzy6 in reply to helingmic

Hello helingmic it is therapeutic and has a magnetism about it which draws me to it. xx

2malinka profile image
2malinka

Hi Suzy, That is exactly how I feel. After being hospitalized twice within 9 weeks with a raging chest infection & after the second visist, being discharged with home oxygen(15 hours daily on 1/2 litre) I thought my world had ended. I am 64 but fortunately I still work 4 days a week. So finding this site was a virtual Godsend. Yes, most days I am still very frightened but it is so comforting to know that there are other people in the same boat. 20 years ago it was a completely different story.

Suzy6 profile image
Suzy6 in reply to 2malinka

Hi malinka I thought my world had ended 18 months ago when I was diagnosed with emphysema Fev1 32.5 but after coming on here realised how lucky I am. Well done for coping with everything and still working 4 days. Keep active. xx

onamission profile image
onamission

I have had more help, understanding and support from this site than I had off my old GP. My lap top is my life line and a ticket to the outside world when I'm to ill to go out and Google is worth its weight in gold when you are up in the middle of the night and are really worried about a pain or being breathless we are lucky really.

Suzy6 profile image
Suzy6 in reply to onamission

Hello onamission I have had more understanding, support and help on here than from my GP. My lap top is my friend and companion too. When I can't sleep I play childish games on it. Silly my family think I am. xx

Suzy6 profile image
Suzy6 in reply to onamission

Hello onamission I have had more understanding, support and help on here than from my GP. My lap top is my friend and companion too. When I can't sleep I play childish games on it. Silly my family think I am. xx

JParkway58 profile image
JParkway58

Hi onamision I'm fairly new to the forum. I totally agree with you there are so many lovely helpfull people here. It's good to talk to people that understand you, and can at times bring humour to us.

helingmic profile image
helingmic

Suzy, malinka, JParkway58, I fully agree with you all. Indeed, we must encourage each other, because it helps each other to take charge of oneself. I believe that this + the information we gather from people's experience helps us to redress our energy and regain a taste for life. I wish you all a good life!

Suzy6 profile image
Suzy6 in reply to helingmic

Ah thank you mic, you too stay safe and well xx

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