Hello, Seriously, don't you ever feel that enough is enough, month after month constant chest infections, antibiotics to the point of bowel problems, constantly feel like I'm going to fill my pants when I'm struggling to breathe, can't go out to functions anymore ,just feeling so uncomfortable, even hospital appointments are becoming an effort, I really don't want to give in but everything is becoming so difficult, just having a wash in the morning is so hard now, shaving is a luxury, shower is harder than the cross country run was back in the 70's, everyone is telling me to fight it but what the hell, it's beating me no matter what I do, I'm really feeling like I'm losing the fight now, maybe I'm just ill with some other bug...
Had enough: Hello, Seriously, don't you... - Lung Conditions C...
Had enough
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143 Replies
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I am so sorry that you have come to this point. One thing I did pick up in your post is that you have been encouraged to fight. I have to say that I do not understand this notion that we have to “fight” our illnesses and conditions. Once that idea is suggested it leads to the conclusion that if we do not “fight” then it is our own fault that we are ill. it is part and parcel of the urge to “be positive” with the same result: we are to blame for if we are not “positive”. Not fighting is not the same as giving up. One of my favourite qualities, highlighted by our lovely Caspiana, is that of pragmatism. This is accepting that life can throw horrible things at us, s***t happens, but just take it one small step at a time. Tiny successes and achievements, followed by tiny triumphs. And little treats.
All the best
K
Brilliant Katinka 🙂. Very wise words. It does sometimes feel that there's no "fight" left and lifes problems are just too much. But your words are a comfort to many I suspect. Small steps and realise that you're doing well considering all you have to deal with xx
Sometimes there comes a point though when there's nothing more you can do than accept things as continuing to fight is just wasting your time!
Brilliant reply said everything I wanted to .
• in reply toKatinka46
i must say great words that's help me too thanks
• in reply toKatinka46
i think we're all with you here take care
What a lovely response to what I feel is the way we all feel from time to time. Well said
I have nothing to add Katinkaa46, except, keep talking to us, there are many people here, for you, Oh! and, never, never, give up.
All the very best.
Ron
Very true wise words.
Hi,
Like you, I sometimes feel that the world is against me. Like just being told that, although I need a new knee, I can’t have the op because of the high risk of stroke! So I just keep on living my life on oxygen because of my asbestosis, and feel glad that I can enjoy the glorious weather at the moment. My wife has found that she has growths on the bladder, leading to operations and forthcoming radiotherapy.
But hey, we’re in our 80’s, have outlived many of our schoolmates, and manage to enjoy living. Keep smiling. The world still has a lot to offer. And seeing our daughters and grandsons make their way in the world keeps us with our feet on the ground. There’s always a way to lift our thoughts and spirits. Geoff
Hello mymouse, I’m carer for my husband Pete who’s been through a lot with sarcoidosis, COPD, heart attacks and back problems. Some would say he’s lucky because he has me by his side but unfortunately I now have serious problems myself possibly. Awaiting results. I’m scared but determined to keep going. Small steps and one day at a time is really all you can do. Life can be c#+p at times but we just keep going. Take care. X
hi, sorry to hear your awaiting test results, fingers cross not as bad as think. Yes life is difficult at times. I’ve been fighting since child born with PCD, during war, have broken flattened nose to remind me. Best wishes, Jean x
Thank you Jean 🤞🏼
Thinking of you and Pete, love from Carole xx
That's one thing I hate is the uncertainty of waiting on results!
I hope your results are not too bad, dear Carole. You've been such a comfort to everyone on this site as well as to Pete. Very best wishes to both of you. xxxx
Thinking of you Sassy and sending gentle hugs
Thank you xxx
Fingers crossed you will have good test results dear Carole.. I am very tired and more breathless all the time as my last blood tests showed an underactive thyroid so trying to get the correct dose medication. Had second lot of blood tests last Thursday so waiting on results and hopefully will up the dose of my medication. Can take a while but we will get there in the end hopefully. Hoping you will feel better soon , sending love to you and Pete. xxSheila 💕⚘
Hope your results aren’t as bad as you think Carole. Life seems to throw up all sorts of stuff at us. Thinking of you and Pete xx
One thing I have found is it's the build up that's worse than the actual results as you fear the worst thing will happen!
Thank you dear Anita xxx🩷
I know things always look bleak in the early hours , and I can sympathise .
Yesterday I just sat on my back doorstep , so annoyed that all the things I wanted to do and I couldn’t . Frustrating . And I get so annoyed with myself .
I used to tell my father when he voiced his own frustrations , just to accept .
so hard to do .
I often think of things I said to my mum in her old age with regret. I only now understand some of what she went through and how she felt.
Sadly I am thinking more and more of what my poor Mum went through and often find myself saying "sorry mum I didn't realise things were that bad" , she hardly ever moaned . I did try to relieve her of the household chores but wish I had spent more time talking to her or taking her out than rushing round like a loony, its difficult when working full time x
Yes, mymouse, I have had enough pretty much everyday. There is nothing left that makes life worth living. I have my husband who has his own multiple health problems who has also had enough. I know that this will in no way help other than to let you know that you are not alone in how you feel xx
Sorry to hear you are both feeling this way Carole, life must be hard when you are feeling poorly most of the time with no let up. Do you have family and do they visit? Thinking of you x
Thank you Irene, that is kind of you. I have a stepdaughter who visits sometimes every couple of weeks then we often won't see her for a month or two. I have one sister who is 'busy'. I don't often see her but hope to more often as she is retired now. Fingers crossed anyway! Hubby, apart from his daughter, has no family and neither of us have friends. Life is what it is but it gets to us sometimes as I'm sure it does with many people.
Yes its often the case Carole, people are so busy and haven't much time for family. I know the feeling, my daughter comes up when she can but is so busy with job and family life. I live alone and dont see anything of my sisters , thry live too far away, so do feel it more now that i cant get out and about often. I have a couple of friends that pop in now and again to make sure I am upright lol . A couple of my friends have died along with a few family members that I used to see regularly so its makes for a lonely life. Its a good job I am used to being alone but finding it harder to do the things I would normally take in my stride, signs of age I suppose but more my illness I think. I am trying to be positive and will enjoy sitting in the garden this afternoon getting a dose of vitamin d. Take good care x
I didn't know that you live alone Irene. I admire you for coping, something that I couldn't do. PM me if you want or need to chat anytime x
Aaaw thank you Carole. I am normally quite independant and dont suffer much living alone, I have always just had to get on with things but have found this last couple of years getting progressively difficult. Think its a combination of getting older and suffering more with illness x
Yes I too live alone - with my kitties and it was a choice I made in lockdown but I have plenty of friends and we do need to rely on someone I know! I’ve found since covid ive become inactive but now I know only I can do these things…. Today I pulled some weeds and did hoovering ( was so breathless) but I keep on - it’s not easy is it
No its not easy pepparuby1 but at least you did the weeding and hoovering. I think when living alone we push ourselves harder as there is no one else to help do these things. I still make myself walk to the bus stop for my weekly shopping as I know my lungs and body need the exercise and get a taxi back. It is taking me longer to do things like cutting the grass but i am still doing it for the moment. I think if this hip gets any worse i will be housebound before winter which is something I really dont want. Keep your chin up and spoil those kitties x
cutting the grass hood for you I’ve cut it twice then found someone to do it although I know I should do it - it’s about being active but jeez when I’m out of breath I want to sit down now I’m learning to take a break of 5/10 minutes then I can go some more. Gosh you take the bud to get shopping too well done I’m fortunate to drive grab a trolley and go… the supermarket trolleys are a great aid x
How are you and how are the new kitties getting on?
Send my regards to Pepparuby the panther and Hector!
yes all a slow process integrating but it’s lovely to have new life
That was a real loss to the family when Mollie died last year.
oh is this Catgirl?
Yes it is Catgirl!
I dont drive anymore so have to take the bus. I am lucky in that i am not breathless but find it hard to walk because of my hip and I cant breath properly if i walk quickly, which i cant do anymore. I suppose we adapt but know the old saying to be true, use it or lose it so am trying to use it as much as i can x
Sorry to hear you feel so rubbish at the moment. Between getting older and multiple health issues I also start to feel at rock bottom at times . Often it turns out I gave an infection ( that I am not aware of) or medication that has lowered my mood or my upset my stomach.I know it can be a struggle but maybe speak to your GP. Would some adaptions to your home make things easier. You could ask your local council for an assessment. A chat with one of the nurses on the forum. Even getting things off your chest to people on the forum. Plan your day so that you only schedule what you feel you are up..
Sometimes I just need to remind myself. I am never going to be the energetic out going healthy person again. I am a older lady with umpteen health issues I just need to find ways round thing and be the best I can. Mostly there are solution to or ongoing problems . Wishing you well. X
I’m sad to hear you’re feeling so worn down.
I have Interstitial Lung Disease,developing lung fibrosis,lupus Rheumatoid Athritis.
I’m struggling,have to use oxygen when I go out a wheeled Walker enables me to walk about to.IM NOT COMPLAINING,just letting you know how it is.
I don’t think of fighting my health issues,more of I need to try to fit it into y life and cope as well as I can.
Up till 6 years ago I was fine,just a bit of asthma,now have to plan - like leaving stuff to be taken upstairs in a pile so that I’m not making unnecessary journeys.
Have you spoken to GP /consultant about bowel issues.
When I was having problems,I used to take Immodium.
Docs don’t seem keen on it,but it’s not them struggling to feel ok when they’re going out.
Have you mentioned to Any one how you feel ?
Have you been offered pulmonary rehab it’s exercise combined with education.When I went I didn’t know how I could do it,but they observed me closely.I found it a big help.
Life gets me down sometimes,this forum is useful,always some one to listen.
Well done for giving up smoking,when I gave up over 30 years ago,I had health issues for over a year before things settled down.
If I’m offered courses etc. accept.sometimes they’re not so good,but it gets you out and meet different people.
Take care of yourself,it’s sunshine here,which a positive.
Don’t fight your emphysema,just try to cop with it x
Yes imodium are very good aren't they?
They do generic ones in Boots that are cheaper.
even cheaper on Amazon.
One problem that is rarely mention on here is constipation, yet it is often the one thing can be the straw that broke the camel’s back. When you suffer from series conditions which require medication finding that those things that you find so helpful are the cause of giving you a pain in the bum is too much. Elderly folk living alone like myself find it difficult to buy fruit. You either buy too much which gets thrown away when it goes off or don’t bother. Kate says in her post “shit happens” but I think your main problem is in your case it doesn’t. I good dump will change your outlook on life.
If anyone suggests I put all this in rhyme I’ll send Puss round to sort you out!
Hmmm… I can’t accuse you of lowering the tone this time can I? As it was me that started it.
Keith wants a poem about it.
My mind is already thinking up a few choice rhymes.
Lots of love and a cuddle for Puss
Kate xxx.
I just couldn't resist it, a very rare opportunity. Give my very best regards to Keith, I did enjoy meeting him. 🤣🤡🐈⬛xx
I have a supply of tinned fruit, Donald. Pineapple tastes most like the real thing. xxx
That was my solution too. 😀 I have prunes but I don’t particularly like them, fruit cocktail are my favourite but probably the least effective. xxx
Cartons of prune juice v effective. And they keep for a long time. Hope helpful.
I buy frozen pineapple. It comes in chunks so you just take out how much you want daily. xxx
I quite like dried figs, which ought to be almost as good as prunes. My mum was a great believer in Syrup of Figs, though she was too prudish to tell us kids exactly what it did.☹😲😬xxx
I eat a lot of 100% cashew nut butter (nothing in it but cashew nuts). Easy to eat, I just eat it off the spoon straight from the tub, I love nuts but can't eat them anymore as they seem to get stuck and my teeth don't like them but the nut butter is a lovely alternative and it seems to be a great regulator - for me anyway 😮!! (PS pleeease do a rhyme- cheer us all up!)👍😂xxx
I love cashew nuts but like you my teeth find them hard work. I'll look out for cashew nut butter, didn't know they made it. Thanks.
I used to write a rhyme a day, not all that long ago, whilst touring around the countryside in my campervan with my dog Midge at my side. Now it's just Puss and me, both of us incapable of doing much more than eat, sleep and complain. 🙄xxx
🤣I'm in the same club as you two. My greatest pleasures are eating and getting into my bed at night with a heat pad, warm drink and crosswords. I get "Prime Earth smooth cashew nut butter" from Amazon. I buy the 1kilo tub! but I eat it like it's going out of fashion. I drizzle it over bananas, spread it on toast and spoon it straight from the tub It's deee-lishh. Marks & Spencers do a nice one too and it comes in small jars. Meridian do one but I don't like that much. The Prime Earth one tastes very caramelly. 😋xxx
I drove around the country
With Midge sat by my side
In our little motorhome
Tom-tom was our guide
Tom did all the hard work
My mind was free to roam
So I'd send a lot of funny rhymes
To amuse you lot back at home
Ah good memories of your lovely Midge ❤️xx
• in reply toDonald_1931
Thank you Donald_1931, I understand where you are coming from, for me the problem is the opposite, the problem is that when I get very breathless and I am really struggling I find it very hard not to defecate, this is something that more than bothers me, I can no longer dash to the bathroom, as yet I have managed not to loose my bowel but no doubt the day will come, maybe you yourself would benefit from the use of Fybogel or something similar, regards, Steve...
Donald_1931• in reply to
Thanks Steve I did misunderstand what your problem was, it sounds like one of the Tena for Men products would be more applicable. I'll take a look at Fybogel as you suggest.
Yes it's tough and it helps to talk. I call dark days being at the bottom of the treacle tin, then it's a long, hard climb to the top with lots of slipping back in. I'm lucky that my husband just lets me cry then brings me a cup of tea and is so supportive. The consultant at Harefield said he'd be surprised if I wasn't depressed. Many years ago I had cognitive behavioural therapy and that helped and still does as you are given 'tools' to help manage black thoughts. For me having nice things to look forward to helps too. From a holiday to the circus to simple pleasures like hobbies and catching up with friends. I put them in my diary and love to see a full diary. I hope you find something that helps soon.
Yes when you have things to look forward to then nice things have happened!
A week on Tuesday we are definitely going to be evicted and I had tried my best to fight the eviction but no such luck and I have had to accept that nothing more can be done and by carrying on fighting I am wasting my time!
What I do control is my behaviour and I started packing early a few weeks ago and this morning cleared out the last cupboard which was a good job done!
It was a week last Wednesday when I came home and received the bailiff letter saying I will be evicted a week on Tuesday at 10.20am and it was a relief to get the letter and know what I am working with but still it was a shock receiving the letter but I have survived and don't have to worry about receiving it again!
On the letter it said about asking for the warrant to be suspended and how not having found another place to live doesn't warrant suspending the warrant!
I did get a solicitor but they said there's nothing they can do for me in order to stop the eviction!
I have rung the city council to ask about what to do and could they put it in writing that I can leave before the bailiffs come and they said no I am to stay put until the bailiffs arrive as there's nothing they can do for me until that date so I decided best thing to do is keep busy with moving tasks and put in things to look forward to whilst I wait!
With some situations sadly there comes a point when nothing can be done for you and its better to accept it than continue to rail over what can't be changed.
Good luck.
Wise Person as usual, good things come to those who wait. Keep your cool, we all have our fingers crossed for you. Bernardine 🥰🤗🤗🤗
Yesterday I decided I would keep busy with cleaning jobs and those I have done rather than sit around panicking!
All the best x
a new start in your life wishing you a new chapter with good things happening. X
Part of me is looking forward to it and the other part is terrified!
be brave you can do it say a prayer to a departed love one and ask for the strength to go forward xx
I'm sure I will be fine and look back and wonder what the fuss was for!
I hope things improve for you.
Yes I do and I empathise with you. Good to hear your honesty and that you don’t say what you feel the people who only admire positivity want to hear. You need to offload sometimes and we understand. The only way is up and I sincerely hope you will see an upturn in spirit. Please let us know how you are getting on. Lots of healing vibes
Xxxxxx
Its true though that talking through a problem with those who understand is helpful.
• in reply tocofdrop-UK
Thank you...
So sorry to hear that you feel so bad. I can't think of anything to say that isn't really fatuous. I just hope that you start to feel better soon.
• in reply toAlberta56
Thank you...
Hi Mymouse
I feel for you. Ask the doctor to send u for an ENT.
I had reflux which caused me to cough. As in your situation I was put off by GP.
Eventually prescribed 20mgs Nexium, then 40mgs, coughing still with frog in my throat. Blowing my nose all the time, coughing up white “suds” like phlegm. (Acid from stomach)
Awake most of the night coughing blowing nose etc,etc. Absolutely exhausted.
Decided to visit the doctor and insist upon being referred to an ENT specialist.
Scope down into chest, result, severe reflux. advised to take 60mgs per day of Nexium.
Feeling fine again.
I have bronch and asthma.
Hope this helps.
Bernardine
• in reply todjbctla
Thanks djbctla, I have already had the procedure for the reflux, my stomach top sphincter valve is not closing, that has been sorted with Lansoprazole, not ideal but hey ho, the bowel problem now is more lower bowel related, showing inflammation which apparently is suggesting UC or Crohns, personally I think it's more to do with constant antibiotics wreaking havoc on my gut microbiome
djbctla• in reply to
Mymouse, keep asking for solutions from the professionals ie GP, Consultants, nurse etc., give details of for instance the consequences of coughing.
I had the same problem, but now with no coughing no problem down below, back to normal I don’t know myself.
Hopefully they will give u some relief even from that, and u can proceed from there.
Best of luck and wishes
Bernardine 🤗🤗🥰
Am thinking of you mymouse..When really unwell I take each moment at a time ,sounds silly perhaps but that is how I cope.
Your lung buddies on here have posted some great tips and advice.Please do reach out to your medical team and explain how you are feeling.
Let us know how you get on.
• in reply toCloudancer
Thanks Cloudancer, I know, I just got into an 'I give in mood', so frustrating at times when simple things become impossible tasks...
hi,
Please don’t feel so down, I know it’s hard.
I too am going through a bad time, I’m actually in hospital again, this is my 3rd time in just a few weeks. I had a chest infection that turned out to be pneumonia , then I had fluid on the lung , that was the first time in hospital this year, then a week or so later I had a bowel obstruction , back in hospital for a week, then back in hospital now for another bowel obstruction , it’s ongoing, the nurses all know me now, it’s ridiculous , I’ve also got oral thrush so taking my inhaler trimbow is out of the window as it’s making my mouth so sore, I’m n terrible pain and got to have colonoscopy which is very painful, well it is for me.
You will get through this, and im sending you a big hug.🥰🍀
Hope the colonoscopy isn't too bad. they should be able to control the pain. Just tell them if it isn't. (Scream- no point in being stoical.)
• in reply to2013mayo
Thanks 2013mayo and a big hug back to you, you are going through much worse than me, I just just got into one of those I give up moments, I'm fine again now, it's just so frustrating at times when simple little thing that we used to do without any effort are suddenly impossible missions, I really hope that you get well soon...
Sending gentle hugs and thinking of you.Every good wish that the colonoscopy goes well and that you are on the road to better health soon
thank you
Yes it's hard fighting but you have to be Positive. There is always someone worse off believe me and we must be grateful ,and concentrate on what we can do not what we cant. I take everything much slower thesedays small steps but I get there in the end. I agree it's hard and somedays are worse than others but you cant give up on life . Hopefully things will improve for you and I wish you well.
You seem to be suffering from depression and anxiety also, so get help for this by discussing how you feel with your GP. Anxiety can make everything much worse and cause panic attacks. This affects your breathing and can be really scary
I hope you get the help and support you need . Good luck .xxSheila 💕⚘
so true this is wat I always think wen iv had unbelievable times in my life Thirs always some one worse going through unbelievable pain
• in reply togarshe
Thanks garshe, I don't think that it's depression that's the problem, although over the years I have had many episodes of depression this time I think it's just a case of the not being able to get out there and do stuff that's gotten to me, not so long ago I was busy working most days of the week doing various jobs for people, now I can't even make a cuppa without needing a rest in the middle of that task, I'm fine again now, I snapped out of it thankfully..
garshe• in reply to
So pleased you are feeling better. We all have our problems and it can get you down but we have to battle on. Perseverance is the way forward and as long as we get there in the end ,it doesnt matter how long it takes. A lot is mind over matter , dont think about the task but concentrate on something else ,it really works. I have to do this every day . There are steps to my driveway and I used to stand at my front door looking at them ( they are not steep and only a few ) but I would freeze and think I wouldn't make it to my car. I now sing a song (quietly) as I go up the steps and I get there without a problem.
This works climbing the stairs. I take a breath in on the first step and out slowly on the third and so on , always remembering to breathe . I then get to the top without the breathlessness.
Wishing you good luck and we are always here for a chat as we are all in the same place. Lots of love xxSheila
.💕💕⚘⚘🤞🤞
Hi mymouseI am sorry to hear how you feel and I understand how you feel.
We all feel like that but keep getting back up when it knocks you down.
I used to love walking but its more of a plod nowadays.
Just appreciate the little things.
Its a question of adapting. It takes awhile to accept this and I still cry some days as your world gets smaller.
Put some music on. I listen to a lot of '70s music and that takes me back.
Don't give in and I always think it is a game of snakes and ladders. I am on a snake at the moment with iv antibiotics, which is doing my stomach in!
Take care and know you are not alone.
Adapt and Overcome.
Linda
• in reply toLMEI
Thanks LMEI, sorry to hear that you're not well either, I'm fine again now, I have a very loving family here which does help, I live with my niece and her family, she knows when I'm down and always pulls me out of it, I just got that way out, I really want to go back out there and do all the jobs that I used to do, I have a knack of being able to repair things and I play guitar but even that causes breathlessness now, it's all so frustrating at times, I hope you get well soon, take care...
Please don't give up, and I know it's easier said than done. Does your doctor know you are feeling like this as surely they should be coming up with alternatives and any help whatsoever. You actually sound very much like my sister and her health problems. Please 🙏 don't give up and keep chatting. 😉
• in reply toMellywelly
Thanks Mellywelly for your response, I recently saw a doctor in February, I asked why do I keep getting chest infections, her response was "because it's COPD, it's what it does", I said I'm doomed then and that I felt like giving up, I do feel like giving up sometimes, it is so frustrating when we are used to being so active, so busy every day, and then all of a sudden, bang, can't even have a wash or make a cuppa without needing a rest midway, I am alright again now, just needed a rant I think, thanks again...
Has a transplant never been mentioned ? Your still within the age range, and it can be life transforming.
• in reply tosimplesprout
Thanks simplesprout, a lung transplant is something that I would not want, I talked about this subject recently with family and I don't think that I could accept another persons lung in my body, neither do I want to go through the trauma of the surgery, maybe that's just me been funny but that's how I feel on this subject, thank you though...
simplesprout• in reply to
It was just a thought as it changed my life completely. May I wish you the best for the future.
Katinka46 says it all! 1883
Well mymouse, when life is no longer giving you any joy and you can barely look after yourself that's a point we might all reach and each of us will deal with it differently. Personally I might just say to God "take me", I'm ready. You will know when it's time . God bless and I'm sending comforting thoughts and a virtual hug.
• in reply toGintyFerguson
Thank you GintyFerguson, I have been known to lay in my bed at night, or rather propped up, and say "just take me, stop making me suffer like this", I am feeling better again now though, I think I had a very bad day, my breathing is still horrendous but I'm OK...
GintyFerguson• in reply to
Glad to read that you are feeling a wee bit better mymouse. Keep warm.
Hi Mymouse, I'm so sorry you are feeling so low. It sounds like you are depressed, and who can blame you. My advise would be to get to your GP asap and tell him/her how you're feeling. You may need some antidepressants. Remember depression is a physical illness whereby neurones and synapses aren't making good connections. Antidepressants will sort this out. Then I recommend a book called,"Overcoming Depression" by Paul Gilbert. I know none of this will sort out your lung condition, but it will help you deal with it better and maybe bring you a little joy. It has certainly helped me cope with bronchiectasis.
• in reply toBizylizy
Thanks Bizylizy, I don't think I'm depressed, I have had a lot of depression over the years and this feels very different, I have however just been on a two week course of ciprofloxacin, I think those things messed with my head, my moods have been up and down whilst on them, I do feel quite alright again now, the constant chest infections are a nightmare but I have just recently started appointments with my local respiratory team, hopefully they will get to the root of the constant infections...
Hi. You had some excellent comments which may help you cope with your struggles mymouse. To me life is baby steps in dealing with my health Try to embrace positive times xx
Some great advice I got off one of my friends when I said I was worried over getting evicted is to take things a day at a time.
I think u need an appointment with dr or respiratory nurse.id bullet point issues u want to tell them as u have a lot going on. They should b able to help some symptoms.Have u tried probiotics to help offset a/b bowel probs? They r gd.perhaps consider multivitamin +minerals to aid immunity? Yr bound to feel as u do,having infection aft infection. Have u considered help from a carer? Xxx
• in reply toPatk1
Thank you, I shall be talking to the respiratory team very soon, I'm waiting to hear about tests to see if I'm suitable if that's the word, for azithromycin, I do have one of those little live bacteria yogurt drinks every day, it does seem to help a little, maybe I should get myself some decent probiotics ..
In 2016 I had loads of chest infections, so in 2017 I kept a diary, and recorded 18 chest infections. In April 2018 black mould was found covering most of our bathroom floor during the change of the bath for a walk-in shower. The floor was renewed eradicating the mould, and since then I have had NO chest infections (apart from a bout of pneumonia and pleurisy in Nov 2019). Come to think of it I had a lot of chest infections from Aug 2013 when we first moved into this house. Black mould can be in plain sight or hidden wherever there is water leakage, roof, kitchen, bathroom. Worth checking! I believe a long exposure to Staphylloccus Aureus (March to Novemember 2014) caused my bi-basal bronchiectasis. Now with no mould, sleeping upright, and good medication this lung problem can be managed. I also have mild to moderate heart failure, which I think could have been the result of the pneumonia and pleurisy. I think the heart failure is what makes me most out of breath whenever I do anything physical.
• in reply toLutontown
Thank you, I was living in a house that had serious damp issues, I now live with one of my nieces and her family as I just wasn't able to manage on my own and she was worried about the damp in my house, we did think that the damp was making me ill but recently I have had appointments with my local respiratory team, they said that if the damp was causing my current health issues I would have a very specific set of symptoms which I do not have, I do however have Pseudomonas infection for which I have just finished a course of ciprofloxacin, just now it seems that every month I have another infection and it's more antibiotics, more struggling to breathe, I really can't do much at all anymore and it's just so frustrating at times, I know that we all suffer with this horrible disease and I shouldn't moan, you take care of yourself..
Hi mymouse. Yes I have been there . In the past 18 months I have had 2 hospital admissions and started a few new medication regimens that totally have thrown me off balance physically and mentally. In addition I retired, meaning a big change in terms of life purpose and human contact. I thought I was improving with Pul rehab only to damage a pre-existing spinal condition rendering me housebound for 2 months in excrutiating pain. My offspring have moved to far places and I am alone mainly.My friends no longer contact me with frequency and have little family to talk of. Everything is such an effort but effort I will continue to make.
I used to have guitar as a hobby and got to a really good standard (Grade 8 Contemporary).....all given up as I can't play with bands or small groups now. Used to regularly jam with bands in Amsterdam , London, and even North America. Just lost interest.
Well, my only suggestion is to share these feelings of powerlessness with your GP who is most likely to refer you to a mental wellness team. You can take up the initiative by contacting services in your area. I would google social prescribing in your area. They are likely to send you lists of activities and services for disabilities and older persons. If you can engage with any activity to help yourself, it will be a small victory for you. Who knows. you may be feeling very different in a year in a positive way. I wish you all the best xxx JJ 😘❤️
Could u move JJ_7, to be nearer to family xx
Don't have much family Patk1. I will not make anyone feel obliged to provide the human contact I wish, so I guess it is up to me to form networks before I am very disabled by illnesses. Thanks for the thought. 😘xx
Agree with Katinka46 - just treat it as the hand that you've been dealt and play it accordingly. Though, I've found supplemental oxygen and Citalopram anti-depressant helps a lot
Hi mymouse, you have been gjven some good advice by members and dont forget the helpline 0300 222 5800 I am sure they will give some helpful points as well. Its sounds like you are not being given the best of care with your problems and really not getting to grips with infections. What does your consultant say? Do you live alone ? Have you got friends or family living near? I ask these questions as sometimes when feeling so down and living alone we are unable to deal with things ourselves and just need someone to take over and deal with it for us. I do hope you get the help you need and start to feel better x
Hi, until a couple of weeks ago i felt exactly like you, month after month of it, having to use a chair in the bathroom when i cleaned my teeth, so breathless just getting from room to room, massive effort to shower, etc etc, back to back of heavy antibiotics, sensations of my bladder/bowel sinking!! My sis came up for a visit and the tears in her eyes i knew she thought it was for the last time...my friends did too. They were trying to encourage me out of the house but i didn't want to go as i didn't feel confident re my breathlessness etc. Socially i have been in the wilderness hiding away for months and months, truthfully about a year. To be honest i felt so ill and at the end i have brought my Will up to date and had 'conversations' with my son & sis!
Then i had a visit from the respiratory nurse specialist and she put me on AZITHROMYCIN (tried me on Nacys first but that didn't work for me), also i bought online Stay Safe Lungwort Complex after having done considerable research i felt i had nothing to lose.
I AM A DIFFERENT WOMAN!
i'm sorting out my house, COOKING again, GARDENING (lightly), back in my studio, engaging with folk, making plans for outings etc etc, honestly i wouldn't have believed it was possible, down to using my inhaler a couple of times a day and actually feeling my lungs fill after thinking i never would again. I'm still holding my breath (metaphorically) scared of waking up in that same breathless state when it was exhausting me just to get my clothes on.
Talk to your team, i understand it may be more difficult in England than Scotland but the same meds are there as here i think maybe you just have to shout louder, be informed, insist!! It is your right, if your present meds are not helping then try something else.
That's amazing.so pleased for u xx
• in reply tocolourpassion
Thanks colourpassion, It's nice to hear that things are going so well for you, I am waiting to hear about the Azithromycin, I have had the blood test and done the sputum samples, I should hear whether I can have it or not in the next couple of weeks, I am curious about the Stay Safe Lungwort complex, do you feel that it works for you, I have recently found out that a dose of vitamin e and vitamin d3 are very helpful for the lungs, the vitamin e is a particular strain though not just any, I have only just started appointments with my local respiratory team, they seem very good, just a matter of time and I got my self into a tiswas, so frustrating, however I'm alright again now, you stay well ..
all here for you 24/7. Take care 🦊xx
Hello mymouse, I couldn't have expressed it better. You have taken the words out of my mouth. It may not be any consolationto you but I too have reached that stage. I have no family and friends are few and far between. It's taken me all morning to get washed and dressed and I am trying to summon up the energy/nerve to wash my hair. I have a fear of water on my head. Like you, my life is becoming harder and harder. I am now on my sixth dose of steroids after 2 lots of antibiotics and oxygen 24.7 since last December. You are not alone and perhaps we can offer each other some comfort in some way. As Katinka says we have no choice but to be pragmatic and accept what life has to throw at us. And... I have to keep reminding myself to take one small step at at time and having taken that step, congratulate ourselves in achieving it. My thoughts and prayers are very much with you. Blessings x
Many many years ago my partner was telling my GP when he visited that i was depressed and needed antidepressants ( i was trying to recover from a very serious life threatening event), my old school GP turned to him and said 'she is not depressed she is seriously pissed off and has every right to be. He was completely correct. I understand that antidepressants have their place but it is not always the answer. Please see my previous reply.
Thing is everyone gets episodes in life when they feel angry and frustrated and it's natural to feel like that!
Sorry Hidden I'm afraid the responses to your post wandered all over the place, some totally irrelevant. But amongst them is some excellent advice which I sincerely hope will help your troubled mind to see that all is not as black as you first thought.
soory you feel like this, but understandable. My father had empysema for over eight years. He decided tostrengthen his heart and lung muscles and used a sationarey bike maching at home everyday. I'm sure it help him. He enjoyed playing bowls when he could.
Infections are debilitating and make you feel down. Hopefully you will turn this corner with summer on the way, and be back to your more positive self. Many illness can't be cured and then we have to find the best way of managing them so that we can still enjoy life. Just started having bowel issues myself and hoping they return to normal!!
Be gentle with yourself. IT sounds like your body needs some time to heal. it takes longer as we get older. We don't bounce back the same way, but we can improve again, and enjoy life, 'Fighting it' can be going with the flow - it in't giving in, but allowing the body to recharge itself.
Dear Mymouse, you seem very low in your post and I can totally understand why you feel you’ve had enough. I was like you a year ago. I was so fed up and depressed with gasping for breath all the time, even just from walking from my bedroom to the bathroom and I stopped going out of the house for a few months…I was too scared to. Can I ask if you do exercise? I never used to do any but when I started a proper regime which I stick to (even though I have to force myself as I find it boring) my health and breathing has improved so much I go out whenever I want now, go abroad, meet friends for lunch, attend Zumba once a week and am back to my happy upbeat self. My FEV1 rating has improved and even my respiratory consultant found this amazing as it seems to be unheard of with COPD. You are only 62 so very young still! I do hope you improve- perhaps now the warmer weather is coming will stop any further chest infections for a while. If you still smoke or vape you need to stop straight away. Best wishes, Jan.
• in reply toJulyAugust
Hi JulyAugust, exercise?... the problem is that I'm down with a chest infection nearly all of the time, I get rid of one infection and sometimes I have a good week where I can actually do stuff, not much but I can maybe go to the bathroom without needing the stairlift the odd time, manage to slowly walk round the supermarket with family, it's always one week max then it's back to infection, been going on for months now, I'm up and down with my moods, it would be great to exercise but I just can't breathe good enough when I have infections all of the time, thanks and take care...
I've also had enough, been alone with severe health problems for a long time, we live in a cruel world unfortunately. I just wanted you to know the you are not alone in feeling this way.
I feel for you there whenever I have bad coughing fits & coughing really hard after moving about I start to either poo in my pants or wee in my pants i think its called stress incontinence
always tell my mum that im ashamed because you do that when youre a child pre toilet training & when your an adult if you want to go to the loo you just go you don t stand or sit there & do it in your pants
So thinking of you
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