ms sheena maria downton

hello

im new to this site . i was diagnosed copd 4 years ago .I was stil working in the local hospital at the time but had to finish 2 years ago i will be 56 on saturday but my breathing feels like im 96 . Saw my consultant yesterday my fev 1 26 % . Just would like to talk to others with the same condition as i dont think people understand how bad it is .

from sheena

48 Replies

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  • Hi Sheena

    Welcome to the forum - there are lots of pepople on the forum who i am sure will be able to offer support and help to alleviate the isolation having a lung condition can bring.

    You can also speak to us at the helpline - 03000 030 555 - Mon - Fri 10am - 6pm - we are can offer advice and support on medical matters, welfare benefits, counselling and many other issues - so please do not hesitate to contact us.

    Best Wishes

    Jo

  • Thanks jo i will get in touch as it is very isolating family can only do so much and they cant really understand what its like thanks again

    sheena

  • Hi Sheena

    Like you, new to this site, also diagnosed four years ago, FEV1 23% and two years younger; and know exactly how you feel! Rubbish isn't it? Yet still here, pink and breathing, sun is shining and a coffee on my balcony seems a good idea. Did Pulminory Rehab and managed to up the FEV by 1% ! As you will see by looking on the forum there are some truly lovely people on here, ready willing and able to support you in any way they can. Chin up - you are not on your own!

    Best regards

    Lesley

  • Hi lesley

    yes your right it is rubbish im normally quite cheerful but sometimes i do get very down that especially in winter when i cant really go out without gasping for breath and coughing really badly . I am slightly better in warm weather but as you said chin up or in my case chins as im on seroids long term and put a stone on since finishing work !!!

    Best wishes

    sheena

  • Oh love you to pieces! Will take your chin with pleasure - have the opposite effect, skinny as a rake and trying hard to put it on - not a good look I can tell you. I get down days too - especially when the cat shreds me to bits! Humour gets me through, mostly, but sometimes a wallow is good for the soul, as it reminds you there are better days to come, and if that fails, Southern Comfort and Vimto works! I don't work either now, had to give up embroidery and printing as funnily enough floating threads and printing ink didn't go very well with stuffed lungs - hey ho - spent two years being very angry and now am very chilled despite anything and everything that gets thrown your way.

    Best wishes back at ya

    Lesley

  • Very true i do enjoy a good old moan i must say and enjoy a right old belly laugh too . Dont know what to do with myself some days my mind wants to do everything but the cloggy lungs wont let me grrr . Never mind be looking forward to those better days hope this miserable weather changes then things will improve although its quie warm sitting indoors in the sun sound like an old woman in her rocking chair i will shape up now and get a grip .

    Sheena

  • Oh I did laugh at that - purely because have been sitting on my swingy chair on the balcony like some old dear - hahaha! - and had the stereotypical cat beside me, just need the knitting and the picture complete. (Can't knit, slight problem). Sun has rejuvinated me (well, the head says so, therefore it must be true?) Happy rest of Tuesday - roll on the proper spring and summer, it's much kinder to the poor ole bod.

    Lesley

  • Well old girl you have a nice tuesday too and enjoy that little bit of sunshine on the old bones !!!

    take care

    sheena

  • Hello and welcome Sheena.

    This is a great site with many really helpful people. Take up Jo's offer from BLF, they can really help.

    Lynne xx

  • Hi lynne

    Yes this a good site and im glad i joined be looking forward to talking to people with this horrible condition .

    sheena xx

  • Welcome Sheena and Scrobbitty,

    Lots of us on here to chat to, moan, groan whatever we all feel rubbish at times.

    I was diagnosed in 2006 and still not used to having to do things so slowly.

    gets really frustrating when you cant do it or can but it takes so long.!

    I get so tired, the day seems to go by and not much done.

    lets hope the warmer weather will improve things.

    Mary

  • Thanks ivyleaf, nice to be here in an obscure way. Have ordered sunshine on a long term basis, so here's hoping......

    Lesley

  • hi am new ear to.no knowledge of copd moderate of old gp.av got a new 1.is warm weather good for us copd ppl

  • Hi mary

    yes its very tiring but with scrobbitty ordering warm weather well you cant go wrong can you ? We shall be able to do our very little itty bitty things but we would have done them so thats good instead of someone doing them for you . So here is to slightly "best not go over the top " better times

    sheena

  • Welcome both new comers to the crazy BLF blog.

    You will find this is a site where you can say more or less what you want about your illness and mood, get a good dose of common sense and advice on all sorts of problems and also have a good belly laugh and there will always be someone along at all times of day and night.

    Of course there is also the BLF help line who although I have never used them reports say they are "bloody" brilliant (hope that wont get censored :D

    Janet

    xxx

  • Thanks Janet - going to stop hijhacking Sheena's blog now and just a big thanks for being welcomed. Have been reading the blogs for a little while now and totally agree that the support giving here is second to none. Cheers BLF bloggers :)

    Oh and still sunny here in Dorset so plan working so far........

    Lesley

  • Hi janet

    Yes it will be nice to have a good old moan about this rubbish illness. The BLF helpline sounds "Bloody" brilliant as you said good to know there is somewhere you can go to answer questions .

    sheena xxx

  • I suppose we all get 'down' days - I do. Some days breathing is better than other days. The sun and blue sky really seems to make a difference. I'm on oxygen all the while, but get about OK and still enjoy life. I need to put weight on!, at the moment on a course of Kit Kats. I find family don't realise how poorly my lungs are because I look OK, my OH seems to think I'm going to live forever although on a day like today even I think I am. Welcome to the site both of you.

    Lib x

  • Hi lib

    Thats exactly what happens to me because i look ok my lot think im not that bad but when trying to walk upstairs leaves me gasping for breath or just walking a small distance . I also feel embarrassed when i have to stop outdoors to get my breath and making this horrible noise trying to breathe also the coughing . As you said better days when sun has got his hat on just wish he would wear it a bit more or get a new one !! Thanks for your welcome take care .

    Sheena xx

  • Welcometo the site scrobbitty and jennamanndy,,and thanks for ordering some more sunshine,,i to have been sat in the front garden with my coffee,,first time this year,,had a lovely walk with the dog on weymouth beach,,( a slow walk) and now going to put feet up,,did think about ironing, but that standing kills me,,,tried doing it sitting on a stool,, but that drove me nuts as well,,another job postponed,,do you live near Weymouth jennamandy,,we have a good breathe easy meetings once a month,,nice to meet meet new people with the same problems,,,,

    chrissie

  • Hi chrissie

    Glad you had a nice walk at the moment i cant do the walking .Hope to get out a bit when it gets a bit warmer .Its the cold air that gets to me seems to bring on a coughing fit and i get very breathless . I dont live near weymouth i live in south wales so quite far to come to a meeting !!! Its good to talk to people with the same problems though as i dont know anyone with this horrible disease . Thanks for the welcome though much appreciated .

    Sheena

  • Oh yes sorry its srobbity that lives in Dorset,,,silly me,,i have to keep walking,,got myself a rescue dog last year,,good reason to get out,,otherwise i think i woud just end up sitting here feeling sorry for myself as we all do at times,,i,m sure its done me good as well,,even in the coldest of weather i,ve managed, although was reduced to a crawl,,and i don,t cough as much as i used to,,maybe all that fresh air does something,,i didnt even get a cold this year ,now that is a bonus,,,

  • oh that is good ive just been to see my consultant yesterday and ive gone down quite a lot so put my steroids up again . I had a lovely old dog for 12 years she had to be put to sleep 2 weeks ago she was very poorly god bless her i miss her dreadfully but she s in doggy heaven now so she is well again . Dogs are such a joy . Its the walking i miss but it puts me off when i think of the coughing its going to bring on . Well thats my moan anyway i hope to get a bit better with this medication and maybe have a jaunt in the garden give my best to your litle doggy .

    sheena

  • *waves a warm welcome to our 2 new friends*

    Hello ladies :)

    We're glad to see you here. Bet you followed the yellow brick road to reach us, eh ?

  • i sure did follow that road and look where i ended up !!! feel better aleady xx

  • thanks syl thats a lovely feeling that your not on your own it can be very isolating sometimes so its nice to have a chat to people who know how you feel

  • well thats good we can all gasp for breath together eh? Im even thinking is it worh visiting my consultantant anymore when there is really nothing to be done . I was in hospital last year with severe chest infection then ha pneumonia in january so feel pretty battered . But on the bright side still breathing "just" xx

  • Welcome Sheena and Lesley.. If your a bit down go and read KingOfTheCocktails jokes. They will soon cheer you up ! :)

  • Thanks puff will do . i read quite a lot these days thats when im not running marathons !!! huh i wish cant manage stairs most days . well never mind because lesleys having a word with mr sunshine if he would put his hat on anytime soon so the cold air can do one . That would be nice .x

  • If you haven't done it already ask your doctor to put you on a Pulmonary Rehab course. It is well worth it. Exercise is the next best thing for COPD after giving up smoking. I have very severe emphysema but I still do my part-time job that I did before I got diagnosed 2 years ago. It's an outside job and I work in freezing weather. Minus two the other night ! I seem to breathe better in the cold air rather than indoors.

  • rehab did nothing for me and i cant tolerate cold air cant even open the door sometimes it brings on severe coughing fit that leaves me drained and bringing up a lot of mucas

  • Sorry to hear that about PR. I suppose it doesn't work for everyone. As for the cold air, I think it's only me who finds it ok on here. I expect my body is used to it after all these years.

  • Hi Jennamandy, see how fabulous this place is?

    Welcome and wish you well.

    Xxxx

  • Thanks for the welcome pollyp yes your right it is fab xx

  • If you have to go out in the cold Jennamandy, try a scarf over your mouth and nose then the air is warmed a bit before it hits the lungs. I have severe COPD stage 4 but still like to get some fresh air every day, Glass half full never half empty!

    Carole x

  • i have tried a scarf it just gets to me if its a bit far although this weather has been pretty bad so it will be better soon i hope

    sheena xx

  • Snoods are the new scarf nowadays. I've got a man type one and they can be used from being a scarf to a balaclava. Mine cost a fiver at the local market ! :)

  • i have a good big scarf but will get a snood though . Weather should break soon hopefully thanks for the advice xx

  • Roll on the summer ! :)

  • yes roll on sunny days . raining again today and flipping wind i hate the wind so much grrrr xx

  • Welcome ladies, we are the only ones who understand our illness, no one knows what a struggle it is on bad days to breath, its the panic as well that makes it worse, I do the deep breath in and out through pursed lips slowly for a count of 4, it does help me alot but exercise is important if you can, roll on warm weather, lovely yesterday though, makes us feel brighter, take care xxx

    Ju

  • thanks for the warm welcome ju yes i do the breathe in and out through pursed lips and your right it does work but sometimes breathing so bad i have to get some sort of breath back before i can start . Weather back to normal today dark gloomy and rainy bit like me really . Never mind sun has to arrive one day happy days xx x

  • Hi jennamandy, yes sometimes it is hard when so out of breath I agree, weather is horrible again, we thought spring had sprung the other day- perhaps not errrr.... take care xxx

    Ju

  • hi sheena im new as well 2 this.was late diagonised with moderate cops at xmas.thanks to my old gp ignoring my june 2012 xray as no action needed.i got hold of it in jan.and i wasnt happl .i was upset. spoke to him .he said well u stoped smoking now.wont get any worse.what do u no i said u cant read an xray report.im 63 mum of 4 gran to 11 great gran of 1 lovely great gran daughter.i havnt got a consultant.how do u get 1.the spimetry was 67.didnt get that explained.just got a blue inhaler.and a seritide 1.and told to read copd booklet wat practise nurse give me.and she said see u nx jan 2014. r sooner if u get well u no.well i dont no.god thez ppl r not real.

  • hi caroll

    i know what you mean as i got very frustrated too. I was taken unwell while i was at work in my local hospital got taken down to a and where the doctor told me to see my gp. as he thought i may have emphysema . gp sent me to practice nurse for a lung function test . There i was told i had copd and was given spiriva pump . i had nt smoked for 5 years so i obviously didnt get any better . I worked for another 2 years untill i could nt go on i was to breathless some days to even leave the house . went back fore another lung function and was sent to see consultant because i had gone on to have severe copd. went into hospital last april with severe breathing difficulties and was in for 11 days . got a lot of medication now and on steroids long term but still have difficulty breathing . I would go back to gp carol and tell him your breathing is worse and get another lung function test you might be refered to consultant then . I dont know how they say if you stop smoking it will get better although im glad i did give it up , but im no better just a lot worse . Its a horrible illness caroll and people dont inderstand how bad it is unless they have it themselves thats why this site is so good because everyone here knows how you feel love.

    sheena x

  • thank u ever so much for ur qick reply sheena.nice of u that.my old stupid gp didnt giv meanything well wen ad dun tellin him wat i thought of him ignoring my june 2012 xray he was bit shocked to hear i have got a mouth.im seeing my new gp nx week.he nos bout copd and he is ok.it was him wat saw me cuming ot of the soimetry test.he asked wat was rong .he was my gp b 4 he left 2 go nx drs practise i should av followed him now in hindsight.but u ave giv new gps a chance as he bin a gp 30yr but doesnt seem to clued up now think he in a comfort zone now.my chair my office etc.thats sounds bit naff but he relly anoyed me with atitude as did his practise like ye read this copd book just lobbed it on desk.ye see u nx jan 2014 r wenever u have cum bk.was really hard work 4 er .god it was me doing test all she did was sit therelooking at a ot of date luked like a computer on er desk.av sinc found ot from this site the rules.1st av 8hr sleep r rest.4hr b4 test eat small lite meal cereal etc an no housework heavy no lifting wasnt told any of that.am glad am educating myself now as havnt ad no help watsever.

  • glad you have some info now caroll hope you get answers you want . This site is really good when you dont understand something you can always find out here .

    take care

    sheena x

  • hi .had bad day .pain under left ribs not moving.ad it al day.an now every day.dont no what it is.i waited 5 wk for a referral of my old gp wat messed me up.i went yesterday 2 the nhs cats asses mobile units in oldham .b an q car park.lot ppl there.i honestly blved i was geting my hitus hernia sorted.after 8month of pain with that as well as avin copd.well i was wrong.dc there was bad in the language of english .never mind.i think he understood more then he cud speak it.asked me were pain.do i drink no.ceased smoking.copd moderate.i need help with hitus its painful.and i cant eat r rest proper.well he checked ribs 4 pain.then the nurse took me 2 another unit wer another nurse said .i make u appointment at thameside hoz.i asked why.well u go ther 9april ave another access meanin chat.then hey tell me go home and will send for me with a date go for either camera r a barniam meal.c why hitus causing pain.my god i told nurse u joking me.no.this is the route to go down.i said well this is really ot of order.ridiciculous.so all in all am looking at something like 3 to 4 month be4 otdone.i asked for pain relief.no got nothing hear.waste of taxpayers mony.now am seeing why the nhs ave no mony.caus its being wasted on were i went yesterday.nurses there in the mobile units looked very relaxed.like half was ready for going out not going to work.dressed like was rdy for out.makin cups of tea coffee in abundance.not for us.for them an staff.i was in pain and got nothing for it.so now waiting for 9 april round 2 of this.am really fed up thats the truth.am seeing my new gp nxweek am tellin him .as it was old gp wat did referal for hitus hernia.ye i no why now cs of all messin about up an down hear an there.am really fed up.any1 elz get like that sometime