British Lung Foundation
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Hi all haven't posted in ages but have been following posts. Seriously fed up scared depressed and have been having a lot of suicidal thoughts which I know is selfish and pathetic of me cuz I know there's a lot worse than me. My life has I knew it has ended and trying to adjust to all this is so hard. Every time I go to lung doctor I get told something else is wrong with me. I'm doing everything they are telling me but I'm still struggling so much. Ive gave up work due to my unreliability and working for a charity I felt guilty. I was first diagnosed with copd four years since then I've now been told I've bronchiectasis emphysema fluid in Base of lungs high pressure in lungs moderate heart damage n a few other things are being investigated. I've even had to get an hiv test due to my immune system it was negative. I just feel like I'm such a burden to my children who at present do everything for me I'm going to counselling but it's not helping much at present. I'm on my third course of antibiotics and second course of steroids pain In lungs n in the upper part of my trachea excruciating. Nothing helping I just don't know what else to do I'm taking vitamin a c n d also a mushroom based vitamin that I can't spell it's something like cordyceps. Ive really had enough of feeling ill no energy and nothing helping please give me some advice is there help for me or am I on my way out sorry for the long post and I'm thanking everyone who replies in advance. This has probably been one of the hardest things I've had to write but I can't continue like this I'm so unhappy and negative the complete opposite to what I was xo

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So sorry to read your post. What a very hard time it is for you. I am glad you are having counselling. I know you say it is not helping yet. But stick with it, and if you find that the counsellor is really not helping then ask to change to someone else. It is a very personal relationship and it is crucial that you find the right person.

Accept the help your family and friends are giving you. I am sure you did the same for others when they needed it. There is as much grace and generosity in receiving help as giving it. And forgot the injunction that “it is better to give then to receive,”. That is nonsense, and puts the recipient in an intolerable and burdensome position.

One step at a time, one breath at a time. And don’t forget to reward yourself with little treats.

Hang in there, and I wish you all the best.

K xx

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You hang in there and never give up fighting. I know it's hard for you, but accept the offer of help and don't give up on the counseling you will get there. I think you are very brave to put all your thoughts and feelings into words. Try to stay positive and take care. I wish you well and remember you are never alone, there is always someone ready to listen and help.

Love 😊 Bernadette xxx

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I am sending you my Heartfelt Love. Been there also. I am off to my Transplant Clinic to see if they keep me on the LIST for New Lungs...By God I'll fight to have a New Life. Be Strong Sweet Lady, You will get through it.

xxx Carolina.

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Dear llo1970,

How brave of you to bare your soul to us, that has taken a lot of courage. It is a measure of how you feel and who you are.

Chronic illness can bring on such dark days and to look back and see what your life and energy levels have been is certainly a very sad exercise. Often counsellors just dont know how to hit the spot you need, sounds like you may need to change them!

If not for you, then for your family and friends who love you, would suffer a great loss in their life. Do continue to be the brave woman that you already have shown yourself to be and know that we are here to listen and support you on those days when all you wish is negative for yourself.

Forwards Ever llo1970

Axx

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((((Hugs)))) llo1970

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I have found that illness can make you feel at rock bottom. Try to carry on with the counselling- I found it helped me but not in the way I expected. Take one day , one hour, one minute at a time and let yourself be smothered in love by your family. Hope you can see some light soon. x

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Things do get better so don't give up. I know its difficult but try to concentrate on the good things in your life and start fighting your illness - exercise (even a little) helps mentally as well as physically. You can do it x

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Hey there,

I'm so sorry to hear that you are not feeling your best. It's really hard to think about things if you're in pain or feeling run down. Is there anything that you could do to give you short term relief?

What are your eating and sleeping patterns like? I personally find when these two things are out of routine then it tends to exacerbate things. How could these areas be improved so you are get better nourishment and greater sleep. I experimented with a dairy, wheat and sugar free diet to help fight the inflammation and reduce mucus production.

It might be helpful to think about things that make it easier to manage without causing you more harm. Do share, because other people might find it useful to hear what worked for you too.

I'm sure you're not a burden to your children. Are you able to discuss with them how you're feeling? I'm sure if they were aware then they could be more mindful of it. If not, you could call the Samaritans helpline or go to your local IAPT service where you could access some CBT (although I'm not sure where you live so don't know what services you have available).

Thanks for sharing your story, i think it's important for us all to acknowledge the darker sides of living with a long term condition, especially lung disease. We are all here to support you as part of a community.

Virtual hugs 🤗

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Sleeping eating all up the left I live in Belfast N Ireland. Trying to push myself to go to yoga tonight but then I get so caught up in my breathing it tends to destroy everything I want to do. Although I do no I probably make things worse by overthinking things xox

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How did yoga go?

I do yoga too and I suppose some aspects of the practice means we will be out of breath (it means are body is working away). Could it be helpful to shift your focus to what your muscles are doing instead?

A downward dog high five ;p Nx

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Didn't go took a really bad turn with panic anxiety and crying. Doctor was lovely and as arranged for extra mental emergency services but that's not till November. Went to my gentle counselling today cried the whole way through it and ended up in hospital tonight with my breathing being told chest is fairly clear bloods show no infection n that I don't have bronchiectasis. Yet my lung specialist says I do I totally give up. Plus after three courses of antibiotics and two of steroids I'm glad I don't have infection but then why am I having such trouble breathing walking wheezing feel like there's gunk in my chest that I can't get up. Swear sometimes doctors just make you feel mad n like we are the ones talking crap lol xox but I'm ere fight another day and hopefully get the positive vibe back into me xoxoxo and really hope everyone doing well n sending happy thoughts prayers and love to everyone xox

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Hey,

Good to hear that you're getting extra services, a shame its a month away but you might find these linka helpful in the mean time:

mind.org.uk/ - they have some useful information about anxiety and panic attacks.

If you enjoy reading then you (or anyone else) might like this book by Stephen Palmer bit.ly/2ggdeuF (obviously there are other places you can the book, not just this company).

I hope you are seeing in respiratory specialist, it must be pain thinking you have bronchiectasis when you don't and still having problems with your chest. They key to all this also includes having a great professional team by your side.

Downward dog high five! Nx

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As usual all great replies. All I will add is give yourself a break. Get all the help you can, if you are not happy with the Nurses, Doctors, Specialists Counsellors etc ask for a different one, you have the right to do this.

I found breathing exercises helped me big time to control my anxiety/panic attacks.

Don't give up on yourself and your family, they would be devastated at losing you.

Be strong and get all the help you deserve to help you get over this depression.

We are always here for you as well, as you can see from all the replies.

Love to you and your loving family.

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Thank you all for taking the time to read and answer me. I'm crying as I'm reading your lovely heartfelt replies it really does help just that feeling of someone caring enough to answer with love and positivity xoxo

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Dear Llo1970

You've had such lovely caring replies and I agree wholeheartedly with every one.

All I can add is how much I can totally empathise with exactly how you feel!! I think as well as how all the physical problems make you feel it's how it effects you emotionally that is the hardest.

I've felt just like you that I've been a burden to my family as I haven't got the health or energy I used to have, plans are often made then cancelled, almost dread them asking how I am as I sound as if I'm moaning again!

Also in my case, I stopped work 3 years ago ( due to lungs aged 59). I was very " into" my job and it really defined me. Now that prop has been taken away , I've had to really face myself and unresolved issues from my difficult childhood are emerging. No doubt I should have dealt with them years ago.

I'm working through them but what a long hard journey which perhaps if I hadn't got chronically ill I would have carried on " masking ."

Reason I am telling you that is that when you are so full of physical problems I think it forces you to " face yourself " more.

Sad really that it's when we are at our lowest .. for whatever reason.. we have to be our strongest!

Of course this is my story,, not yours!! Am mentioning though for the sole reason of helping you to not feel so alone with these dark thoughts .

I think that's one of the worst things.. lying in bed feeling really ill with all these horrid dark emotional feelings ... and not actually knowing anyone in the same position. Feeling really horrible yourself , hating ... as you feel... ruining your family's life.

Of course you're not!!! They will love and care for you ... it's how we perceive it!

Also you will come through it and be a stronger person for it. I know without any doubt that people who've " suffered" in some way are often more empathetic people!

I guess what I'm really saying to you is:

All the comforting advice everyone has given you is so so true!

You aren't alone ... even though it seems like it.... lots of us will feel or have felt like you

" Let it out".. crying is cathartic, releases feel good hormones. I often cry!

Above all.... be kind to yourself ,do anything that makes you feel better as you deserve it.

Finally ... feel free to moan on here.

Sending you a big hug, kisses, love and understanding

Xxxxx

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Arc thank you so much for your lovely reply it's trying to change me and come to terms with the changes I have to make to me. During the night is the worst xox everybody has been so supportive and nice so maybe there is hop at the end of this dark tunnel xoxo

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Yes you are so right and I totally understand as have felt .. and still do like you in that it's coming to terms with being different to how you were. Also agree nights can be horrible if you are lying awake. When I've felt low during the night, I come downstairs and sit right close to a fanheater. Somehow the sound and warmth is comforting.

You will have better times though ... I promise you! Remember you're not the only one . We all have problems on here so as I said earlier are all wiser and more empathetic! Xxx

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Thank you for sharing your experiences Winter123,

It's true we end up facing ourselves, the good, bad and ugly in the dark of night. Although difficult, this can sometimes be were our personal growth lies. I hope you can speak to someone about this.

You raise an interesting point about our identity changing as result of our health, I do hope you're able to explore other opportunities (like volunteering) that will allow you to share your passion and skills. Hopefully you can discover new areas of yourself too.

Nx

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Hi winter. I have only just read this post and am glad ll01970 has received positive and sensitive messages. I was diagnosed with Bronchiectasis 5 years ago. Its getting slowly worse, but I am replying to some of the points mentioned in your reply. I am 60 and I to left work a few years ago. I was a psychiatric nurse and constantly beat myself up when I feel the depression coming on as I feel as if I should be able to beat it.

I loved working whit people although the challenges of working on an acute female admission ward was too much.

I was also bullied by care staff and the manager was not fighting my corner should I say, so the only way was out. Since leaving however I too feel I have lost my identity, and like you constantly live in my past and back to my less than perfect childhood. Sometimes I can spend hours with these thoughts going around in a constant circle until I'm tired out!

It is hard, but I have taken comfort from your post, and that's the good thing about this forum you can always engage with someone who understands your problem.

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Dear falcon cottage

Want to say do hope you are feeling abit better, physically and emotionally, which I really do.... yet I know at the same time if you are feeling as you do, it may also cause you to pressurise yourself if you’re not feeling any better.... if that makes sense! So perhaps I should just say.... my thoughts are with you and I understand!!

I know of a relatives partner who works in the mental health field and how incredibly hard it is... he’s taken time off for depression as a result of pressures, lack of resources etc etc! So praise yourself for given all you gave!

Re my personal emotional problems. I’ve had the 6 free nhs self guided help sessions which were helpful and also some private psychotherapy sessions, again interesting and insightful, whilst emotional. Due to fatigue and Bronchiectasis problems, I stopped as found the journey and weekly commitment too much.

The interesting thing is that there has been a ? as to whether I have CFS/ME ( too long to go into now!). Since I wrote the reply I’ve seen a senior therapist for the CFS/ME service who said I met the criteria. Have an excellent book and it matches how I feel totally.

Although you don’t,I imagine have CFS, the book is really a lot about how our approach to life, issues from childhood drain us and cause us to operate in unhelpful ways to our mind and body.

I hesitate to give you any advice as a mental health professional!!! but it’s all about looking deeper into ourselves, always praising ourselves, putting ourselves first.

So whether I have CFS or not all wonderful advice. Of course, a very long life changing business changing aspects of oneself that’s making life harder.

final words..... praise yourself, be as kind as you can to yourself as you are worth it. Nothing is your fault.

💗xx

Ps one of the hardest things I find is to recognise when you are “ beating yourself up”.... I probably do it a lot of the time, it’s my way of being... be great to stop it but acknowledging it is a start I guess !

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Dear falcon cottage

Another thing..... I’ve noticed do t that although I’ve got a predisposition for CFS/ME , that it’s the undiagnosed infections I’ve had a lot of ( another story!) with Bronchiectasis that have caused it now. So keep on top in infections! Xx

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Thank you so much for your reply. just knowing someone else understands how other issues (psychological) impact upon this illness is such a relief. I don't like telling family how I feel as I get the "dont be so negative" reaction. That is not to mean they don't care-they do- but not sure they understand other issues.

I wish you well and hope you have a wonderful new year. Will keep up to speed with your posts. Again many thanks Sue

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An absolute pleasure Sue. I’ve had some very low times since diagnosis and recently so it’s also a help to me knowing I am not the only one!

Although the physical impact can in no way !! be underestimated, the emotional impact is probably worse in ways we have said.

It’s also hard as we all feel a pressure to be positive/ not be negative, which is the way forward..... but ... importantly ... think we should not be hard on ourselves and recognise how incredibly hard this is!! And how it can be a pressure.

So perhaps instead of thinking... must be positive, we should say .... accept how we are, praise and love ourselves for how we are at the moment and aim to be much more aware of “ beating ourselves up.”

I say all this but it’s quite a business doing it. It’s funny as I’m not normally “ imaginative “ as such but being ill/ facing myself and looking deeper into how I operate has made me abit that way. I often feel as if I’m on a journey and will reach my destination (ie accepting myself as having to operate differently and be more at peace ) , but wouldn’t like to say how far of my journey I’ve made!

When I reach my destination, ultimate goal is to feel more fulfilled than before having Bronchiectasis. Being positive!!! I guess having it has forced afew demons out which may not have come out if I hadn’t had it!! If that makes sense.

On a lighter note , after all the “deep stuff(!),”wishing you all the best too for 2018 xxx

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Thanks again. Any time you want to post no matter how you are feeling feel free I'm always here!

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Aw love, you're in one of those black places at the moment, and a lot of us can feel for you because we've been there too; not a lot I can add to all the wonderful replies you'e had except to please realise your own worth - the children you raised are happy to give something back I'm sure, so accept it gracefully and don't let your condition rule your life. Go to yoga, keep in contact with as many people as possible and never be afraid to share your problems. Try to eat, sensibly or not and try to get a good sleep pattern going. I know you'll get through this xx

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Hello llo1970 .

I am sorry to hear things are really so rough right now. Many of our members here have been through very hard times too. We understand what you're going through and all the worries and concerns you have. We are all here to support you. 😊

I think the others have given you some very lovely words of support. I will just share one of my favourite quotes by Alfred Tennyson. It helps me when I feel down.

Hope smiles from the threshold of the year to come, whispering 'it will be happier" .

Sending best wishes to you.

Cas xx 🍁

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That was beautiful Cas.

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❤🍁❤

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Llo.You are certainly not on your way out as you say,by coming on here and with your bravery and fortitude and sharing your thoughts with people who care you are most definitely on your way back in from that dark place that most of us have visited at some time.

Please take time to reflect on the fact that people in this world need you to brighten their day as much as you need them.If all else fails i will loan you my Scruffy cat who does not leave me time to dwell in the dark too long.Lots of love skis and scruffy xx

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Hi sorry you are feeling so Down Believe me a lot of people on this site myself included will tell you they have also Been to a Dark place.When we try to fight it is sometimes 2steps forward 3 steps Back but hopefully one day the tide will turn and there will only be forward steps that is not to say we will never feel low again of course we will but hopefully we will gain the tools to Beat it or at least keep it at Bay Take care

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Hi, you sound very down and we have all been in your shoes. Not a good place, but a place we can all escape from given time. I agree with all the lovely blogs from the forum, we are here, we are your friends and when you/or me for that matter, do not wish to burden our loved ones, we on the forum will listen and hopefully help. You will feel better, it sounds as if you have been bombarded with too much and because you are feeling so bad you feel unable to cope. This will pass, use every offer from family, friends, counsellors, doctors etc. and concentrate on getting as well as you can. I find just getting out amongst others a real help, I smell the trees and thank goodness I am alive. Take heart. Moan at us as much as you like. Take care Maximonkey

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Hope your feeling Lifted Sweetie after all these wonderful Replies. Everyone cares about you and we are only a keyboard away. xxxxxx

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Hi Mate. I can understand how you feel. Just last year i as feelng in a similar way. It was an effort to do the smallest thing. I used to be very strong big body and mustels. I have been living in Thailand for the last 8 years in the heat andhumidity. I went down with bronchitis 3 times a year, when it was Cronic i realy suffered. In hospital 3-4 times a year and they would load me with antibiotic drips and steroids. The steroids just destroyed my body, my flesh seemed to vanish, thin skin bruisingall the time, a little knock would open my skin and bleeding all the time. My musles just shrunk my skin on my arms is very Wrinkly. I hace COPD and Emphasima. Over the last 9 mnths i have been so much better, i never ever take and steroids like Prensislone. I started to walk and it got better each day.

Hang in there.

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When I got my diagnosis of emphysema, on top of my other painful condition's, I hit absolute rock bottom. I felt I'd let my family down so badly.

I couldn't eat and lost 2 stone in weight My Docter went all out, trying to find the right med, to lift my deep depression.

One day, he just said to me, "Things will get better you know."

I didn't believe him but, he was so right.

After a bit of counselling and especially after being sent to a couple of wellness groups, I started to feel my spirits lift.

Everything is up in the air for you at this time, your bound to feel floored, after your diagnosis's but, the Docter's will deal with your conditions and you'll soon see that life is good again.

Come on here, when you feel low, I did, it felt so good to "let my feelings out. "

I couldn't tell my family how low I was, because I didn't want to worry them and trying to hide my fears for so long, actually made me feel much worse. I isolated myself, with no where to turn to that I felt so alone and scared.

A word with your Docter might be needed, just to check if you need treating for depression.

You just hang on in there, until things settle back down and you'll soon see your will to live, come back, stronger than ever. xx

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I hope so life feels so bleak at present but thank you for the reassurance and understanding. Sometimes a bit of positive input is what is needed take care n stay well xoxo

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Yes I know without a doubt that it's when we are at our lowest points that we face ourselves ... but also the opportunity to " dig out" any demons from the past.

Yes I have had some counselling but have read, explored a lot myself and consequently wished I had this self knowledge years ago that I have now! A mixed blessing being ill... acing to change my identity as you say, face myself which is very hard.. but it's a work in progress really moving on. Hopefully I can be optimistic!

I'd love to help others but as well as lung problems , I have also elements of CFS so have to pace. Probably don't want to commit at the moment.

I posted all the post to help llo but if it made anyone else feel better than that's great!

Loving yourself and treating everyone rose Ina caring and non judgement way is everything! X

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