Over the last few months I have become increasingly down. I know whats causing it and to a degree there is very little I can do about it. As I have bronchiolitis obliterans and bronchiectasis coupled with Barretts oesophagus, I feel that my world is shrinking on a daily basis. As I am no longer able to do many of the things I used to do. Everything is a task and I tire so very quickly.
I did see my doctor about it and he said that actually, what I was going through was to be expected when you have a chronic and progressive disease. He said I was to go out an enjoy each day as it comes, to exercise as much as possible and basically that was that.
Yes, wise words, but when you are breathless and unable to do what I used to do, it seems to set me into a cycle of almost grieving for my self that was. I know that that sounds self indulgent but its how I feel.
I am snappy with people, because I try to hide my symptoms and feelings and struggle on.
Am I the only one who has ever felt that this? If so what did you do to help you and those around you.
thank you
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ledge
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You’re not alone ledge and Pete feels the same. His back is very painful so he’s reluctant to move much which impacts his breathing. I have made him an appointment privately to see a back specialist on 2/2 so hoping that leads somewhere.
Trying to do what you can is ok if you can do things but never give up hope. This cold and miserable weather doesn’t help either. Take care xxxxx
Thank you my lovely.... You are such a comfort to so many.... I am sorry Pete feels the same. Its an absolute bummer. I have always been a glass half full kind of person, and this dank darkness is new me... I am even finding hard to appreciate the glass, let alone its contents...xxx
If Yr willing/ want help do go back+ see another Dr.be specific.u could ask also to be referred for palliative care which often offers groups of likeminded people + help with mental health x
Thank you for your reply. I actually thought I was being specific when I spoke to my doctor. As I more or less said what I put into my post. This was on the back my referral after my low scoring post rehab. No one mentioned has mentioned palliative care group referals. Only medication. which in my case, dont help my breathlessness, nor really get to the bottom of why I feel like I do. The medication only masks it. It is the utter grief that I feel as my world gets smaller and less colourful with every passing month.
I think we all understand exactly how u feel.One of best tips I was given,by pulmonary rehab physio, was to move Yr goal posts , slow down to accommodate Yr breathing.it was a lightbulb moment for me. Simple..except its not!
...and as time goes on, those goalposts keep getting moved.its hard.no two ways about it.x
I know that feeling of losing oneself and grieving for the person you were. We are still the wonderful, kind and loving person we used to be, it just doesn't feel like it.
On a practical level do you think some art therapy may help? Even if it's just getting one of those adult colouring books and some good paints - it could help you stay in the moment and not be burdened so much by your situation . Getting our of the house/flat for a short walk now and again if you feel up to it. Remember, you are still you, that wonderful person, try not to be defined by your illness - you are SO much more than that.
I know how you feel - many on here get these feelings but we just have to accept our lot. It's as Sassy says always worse in winter, the gloom and the cold on top of what we have to put up with.
I am the same, what I can do is very limited - It does get you down but at the end of the day. we are stuck with what we have. Maybe you need some help coping from your GP _ best of luck ledge.
Thank you for your reply. Its nice to know that I am not alone, although I dont wish this gloom on any one. My GP as I said wasn't totally helpful. Because as you mentioned it seems to be an unwritten rule, that we have to accept our lot and to a degree I can see the rationale. I think sometimes, I am glad I am still here. But for the most part I just struggle day to day trying as best I can to cope.
All you can do - Spring will soon be here and more bright - it does matter I used to have SAD syndrome and not pleasant. You are not alone ledge and any time you want to talk - Someone will always answer you.
Just to say I totally get what you're saying ledge, hats off to you for putting your feelings in to words. I dont have half the issues you have to deal with but feel similar after losing so much in the isolationof the pandemic.......try to think something positive every day, today it's been 'it's dry out, our third dry day here in Gloucestershire and we've escaped flooding in my town! Just hanging on for spring
This morning I decided I must make the effort to speak to people every day, low n behold on the way to the recycling and a local shop I bumped into 3 people I knew: my lovely neighbour who broke her hip in November and is in a bad way, another lovely neighbour handsome Graham who has Parkinsons and a young woman (I've always dismissed as a drunk) told me she was in AA, I congratulated her & gave her a hug. It's probably an awful thing to admit to but it made me feel a lot luckier than those three.
Somehow putting my feelings into words, have helped a bit. As too knowing I am not the only one. But lord knows, I wish no one else to feel the same Eyore gloom . Basically the gloom and grief of my what was, as opposed to what is my What is ... leads to the anxiety as I try to stuggle on . So hats off to anyone who has responded to me, and also to anyone else who is feeling like me... But when do you actually stop grieving for who you were because that's come as a real eye opener as I am not longer that person and I need to embrace who I have now become.... make sense????
Yes, I guess and hope that it hits us incrementally the relief from tge grief of the losses........ I added a bit to my reply above. One day at a time,
And here is what you wrote some time in 2020 : * I still have unfettered wildness business to pursue once thus sheilding lark is over... i will try and live for as long as ive got with gusto *
Well since then we have lost so much, worsening health, lack of sociability, ghastly depressing news of war and suffering , endless rain so its no wonder you (me and others I'm sure) are down.
Hang on in there. A doctor once told me that taking an antidepressant wouldn't cure me but would hood me together whilst I healed inside, a bit like a plaster cast on a fracture (husband and my mum were both terminally ill). I took them and they did help ××××
peege you little detective you..... That brought me up sharp. Yes, that's the me I mourn. That's the me I knew and recognised. Not this sitting in a corner, festering anxiety ridden creature. a cross between eyore and dobby with pink hair.
Of course it makes sense, none of us are what we once were. I’m totally unrecognisable now though I look roughly the same (roughly being the operative word). Old man with a cat who used to travel widely in a campervan with a little Jack Russell Terrier riding shotgun. There are so many other things to occupy your mind with now which don’t involve physical activity. Writing about these things is also very therapeutic which is why post as much as I do. 🤗🐈🤡
thanks for your reply Don.... If you don't mind me asking, and feel free to either not to reply, or post me privately or publicly . Did you grieve for the old you? If you did how did you cope. Does this grief fade? I also must say I much appreciate your postings. x
I’ve had to change direction a number of times during my long life. Forced upon me by the death of loved ones or the never ending loss of mobility. But each time I have had little time to grieve being so busy in adjusting to my new circumstances. Grieving over lost loved ones is unavoidable but grieving over lost abilities just never occurred to me, it’s called ageing I believe. It’s an opportunity to look for something new and possibly more rewarding things to do.🤗
I seem to have found myself a new friend in Smudge my rescue cat who has the same outlook on life. An outdoor cat adjusting to being a housecat, adjudged fully fit but needing to lose weight and now carrying her microchip with pride .
wise words Don, as usual. Thank you.... But I now feel a bit self indulgent... oh dear...I say this with a smile...as I kick my self up the bu@. Perhaps its time I put my big girl panties on and faced the fact that I am aging. and yes I can do very little I used to love. But find something new is the answer. Thank you and all of you for your support
You don’t know me but I’ve gone through this terribly I had a brain haemorrhage which affected my speech and right side cognitive thinking and memory and yes I mourned deeply for the old me I still do it gets harder when a new illness comes along as I know my body is failing me I’m 61 this all happened in 2016 you do adapt and learn this is the new you but part of the old you is still there. It’s not all doom and gloom we have some brilliant times exercise is very difficult for me due to mobility issues so I’m housebound a lot I love solitaire and crime dramas real life stories etc there’s always something to fill in your time so hang on in there spring is on it’s way
Bless you Wendy... you are quite right, and if you read through these posts. There is an underlying feeling of hope, which at the time of posting, I couldn't see . Its become evident to me, that acceptance is the key and however hard we come to that path, its a road that needs to be travelled. And yes, I really do look forward to spring.
I can totally understand how you feel, my life has totally changed over the last year. Had to give up hobbies that I have loved. Still looking for something to fill the gaps they have left. I seemed to have lost my spark. I don't think the long dark days help. I seem to have turned into a grumpy old women, that I certainly dont want to be. I need to find something that makes me happy but not exhausted I hope you find your spark.
I would join your grumpy old woman club 😂😂.As I now sit in my room and watch people walking past my house going for walks with an ease they take for granted.I too was once that person and now I have an oxygen tank to consider.But I’m still here trying to keep positive.🥰🥰🥰🥰
I suppose it’s thought that there is no need for a Grumpy Old Man’s Club because it has long since been accepted that all old men are grumpy by nature? Thank you Victor Meldrew. 🤔
At the risk of saying something pathetic given the deep feelings and clear sufferings that illness and age bring, if you do go talk to your gp it could be worth getting a check on your vit b12 and magnesium levels. Deficiencies in these makes feeling rotten even worse. It made a big difference to my mum when she felt like you when her COPD was severe. B12,jabs every 3 months did help.
Hi Thinkhealthy.... that's not pathetic.... its a brilliant idea... My medications, I believe can cause vitamin B12 deficiency... something I had never even thought of until your insightful post. Thank you
So glad if that helps - as I understand it, the ‘usual ‘ test for vit b12 isn’t always going to be true . I understand there is a specific test - I might be wrong on this. Worth you asking .
but certainly vit b12 injections (tablet form isn’t sufficient apparently) are not now uncommon (I have three friends who get their 3 monthly pick up ) all the best xx
And if there’s any chance of joining a singing group - no matter what you think of your voice - please give it a try . It lifts you up . I friends who go to can’t sing singers - they have a wild time . It’s the extra oxygen - plus the sheer joy of music - even as we fail to do it justice haha. xxxx
I understand where you're coming from and it is very hard. 12 months ago, I was working full time, looking after my family and out and about most weekends. My life has changed so completely and I often grieve, not only the life I had before, but the life I'm missing out on now. It's hard to just 'accept your lot' but hopefully, soon, we'll be able to shine a little brighter. X
Hello Ledge, Im sorry you are feeling low. This really is the time of the year is the most difficult to get through, its so b cold and the damp affects our chests, gets into your bones and the fuel costs are a worry. Some friends have bought those electric hoodie blanket things - which you can snuggle into your sofa and keep warm, if you are organised enough to sit next to a socket. But what a picture that paints ... we are meant to be getting up and moving about and keeping as active as possible.
To keep going through winter, its little things that can be heartening, to see some snowdrops have appeared, hellebores will be out soon, then dafs, plus getting lost in dramas on tele, reading good stories, keeping in touch with friends, jigsaws, painting etc things which can give a sense of achievement and maybe to get lost in for a little while.
I think it must be tough for GPs in the five minute slot when they cannot offer anything to help their aging patients, some are more empathetic and kindly than others.
Thank god for pussycats Donald, mine are constant pals too. Joining Health unlocked is such a blessing too for linking up with other people struggling on with similar health problems.
So many of us reach this point when everything is going wrong but it could surely e helpful if you could talk to a therapist somehow. Someone to off load on to and be honest about your feelings can really help. Can yoursurgery arrange this? Worth trying I think.
Totally empathise with you on this! My birth certificate tells me I am 66, some days my body feels like it's 96.... one heahealth condition seems piled on top of the other quite regularly,then 3 bereavements in a row.......
one of my GPs has put me on a very low dose of Mirtazapine at bedtime which is helping me sleep thru the night. Then I contacted my local MIND who provided phone calls and several helpful leaflets. One is called 'coping with grief and loss' and another 'accepting uncertainty'. I can heartily recommend them.
when I can, I jot down things in a journal alongside my symptom diary. I have returned to my old sitting down hobby of knitting but don't berate myself if I can only manage a few rows at a time. Watching restful programmes on TV like The Repair Shop, Sewing Bee and Pottery throw down has been helpful too in occupying my mind for an hour!! Bird watching if you have garden birds is also relaxing for me.
I have a small & energetic dog who needs several daily walks, so I have to drag myself outside in all weathers however I am feeling.
It’s tough and most people with chronic progressive conditions go through the same, I was the same until I accepted that I couldn’t go back to my old life of activity. I looked at what I could do, a mobility scooter replaced walking but I was out and about without constantly getting out of breath. I know I’m going to get breathless doing basic tasks so I just go slower and keep stopping for a rest. Changing the bed now takes 20 mins instead of 5 but I still keep going. Focus on things you can do not the things you used to do, and look for new things to replace the old things.
Oh my goodness. I could have written your post. You are certainly not alone. I am on oxygen 24/7 and have lost my independence. I can no longer drive or go out by myself. I can’t do housework or cooking etc. I grieve for who I was every day. I find I am in tears every day and snap at my husband over everything.
I was referred to NHS Talking Therapies but I believe you can refer yourself. They diagnosed me with moderate depression and anxiety. I began a 6 week zoom course last week and am hoping it will help. Good luck!
Well as sad as I am that so many of us feel the same. Its very heartening to hear that we are not the only ones Millyboo.... you are welcome to join the grumpy old women's club if your wish👵😀. wishing you an outcome that truly brightens your future. My post has given me a lot to think about.
It is appropriate to grieve what you have lost, and you are not alone in this, ledge. While not as severely affected as you by my lung condition, I still had to grieve the old fit outdoorsy person I used to be. Then I began to embrace the things I can still do, singing and playing keyboards, writing, collecting post cards, and helping charities with my administration skills. So there is a lot that I still enjoy and get satisfaction from. I just can't climb a fell to the summit or row a boat across Loweswater any more.
You aren't alone ledge, I feel exactly the same. I have a different lung disease but it is advanced now and I am very limited in what I can do. I just get through each day as best I can but feel it's a pointless life. Non of this is of help to you other than to say you are not alone in how you feel xxx
You are so wrong I am glad to say.... your post It only proves that to a degree, what I am feeling is "normal" in an odd sort of way. Because what you feel, what I feel, and what others has said that this feeling isn't so abnormal, nor is it bourn of total self pity. This fact gives me the impetus to make we want to may I say it set up some sort of zoom meeting. Our lives should not be pointless. On a lighter note. I did some mindfulness... and the therapist said be in the moment. focus on your breath... feel each breath... blah blah blah... At that point I wanted to punch her... when you focus on your breath all you can feel and is the wheeze .... which kind of makes matters worse.... It makes me smile now .... but honestly it racked up my anxiety ten fold at that moment ...
I hate the word 'mindfulness' and, like you, the last thing I want to do is focus on my breathing! Getting together would be good for moral support if nothing else.
I hope you saw the funny side of that post. because yes.... ironic as it is, the last thing you want to do is focus on your breathing. She would have been better saying become comfortable in your own skin. Let your natural patterns of breathing calm and focus you to the here and now. You may experience feelings of cold, warmth, anxiety. See where this focus lies, ... look kindly at the place and let that place become .... well something soothing.... blah blah blah.... Its really awful to focus on your breathing, if thats what got you into this mess in the first place😆
I am going to ask if anyone wants to join in some kind of zoom meeting or at least chat... that they send me their details in the chat section.... lets try and get to a new place in 2024
I was going to suggest meditation ….I agree focusing on the breathing was horrific at first . I joined a group class with a number of ‘coughers’ and having a qualified tutor helped us overcome the initial increased anxiety .
Now I find Jon Kabat Zinn you tube helpful , and I enrolled in the Calm app…..10 minute meditations and gentle exercise regime .
I got broken off by a phone call. I have a psychotherapist who phones me once a month or so and talks about herself! I'd be interested in a group meeting/self help group. Can you message me about what details you want please. Thanks, Carole.
well... send me over your details only on chat... where I believe its private... and cannot be read by outsiders. So far a few people have shown interest. so its a matter of speaking to you all and seeing if we can set up a zoom meeting as a befriending way of holding us together in a space that is safe, and caring.
We have held zoom meetings of members on this site before, ledge. Someone has fixed a meeting date and time and posted when it would be held. Those who are interested and can attend, then private message the person organising the online meeting to ask for the zoom code and password.
Thank you for that info. I think I will do it. It seems such a shame not to. As I have said in earlier posts, that I seem to have discussed what a lot of people feel and by sharing this via a zoom meeting. Perhaps we can support each other and find ways of coping via our collective experiences. It may all come to nothing, and no one attends, but at least I have tried one avenue to help extricate myself and hopefully others from gloomsville . Now to go a read up how to set up a zoom meeting.
I am sorry to hear you feel so down, I too have a condition that’s debilitating, copd and it’s very frustrating to not be able to do what I used to do. There is nothing I can do to help you but I’ll send you a virtual hug and some flowers.
I empathise with you Ledge, this time of year doesn’t help either, roll on lighter evenings. I belong to a Breathers group we meet every Tuesday, we have a fitness instructor, we go for a coffee after, we have a laugh. I have made some lovely friends, everyone has a respiratory condition, plus. I really miss not going when I’m poorly. I wonder if there is a group near you, your health centre would know.
Hi chook, you are definitely not alone in feeling like that. I sit and cry every night for a week here and there, usually keeping it in until my partner leaves for his nightshift. He says you should tell me your feeling like this but only you can understand how it feels. I felt like I was given a death sentence when first diagnosed with copd, and still trying after all this time to find something that truly works for me. Its easy for doctors to say do this do that. You want to scream at them I would if I could. One thing is right though, all you can do is take one day at a time. This forum is a godsend when your feeling down. Keep talking to everyone on here 😉
Crumbs... Mellywelly... I seemed to have hit a vein here with my post. and glad in a roundabout way that so many of us have opened up. So yes, this forum is a god send. I have decided, that if any wishes, we get together, either as a one off call, or perhaps zoom where we all can chip in and discuss this. I am sure that like you sitting along and keeping it all in is actually damaging. all its done for me is turn me in to an anxiety ridden, depressed and snappy grumpy old biddy. Fancy joining in by sending me over your contact details in the chat part?
Have you noticed the morning light is earlier . The gloom of winter is slowly going, now almost three weeks since shortest day and in the same way our personal gloom can lighten . You look for new things to do in life and they do appear, sometimes unexpectedly. You are already looking and that is good.
Hi Ledge, you've certainly started something, which could be tremendously positive. Go it, girl. Your post certainly rang a bell with me, and I'm not nearly as ill as some of you folks on here. Quite ill enough, thank you. Though I'm also unofficial carer for my demented husband. I try to be positive, looking back through my enormous photo hoard at all the wonderful places I've been to - what wonderful memories. Trouble is I would like to be out there making more memories. Not sure if I can join you on zoom. I'm an idiot with computer technology. good luck with fighting back against the gloom.
You're not alone in the way you feel a niebough along the street he has suffered depression anxiety for years he use to get counselling to talk to someone about how he was feelin he found it very helpfull now they ring him to see how he is and coping if he feeling low they give him appointments to face to face it's through his docters would that be something that might help you if you can't go to them they can arrange day a nd time for phone call
Hi ledge. You’re not alone. Our health issues affect us mentally and emotionally as well as physically. Always good to speak out on here with people who understand where you’re at. Don’t give up and keep warm in this cold spell. Xx🤗
Thank you.... I dont intend to give up, but what I dont want to do is slip further into this anxiety ridden mess- all the kind words and support this group has shown me shows just how valuable this group is to all x
hi sorry to hear your so low , I suffer with low moods and was diagnosed with clinical depression ( after attempting suicide ) I had therapy for about two years at the maudsley ( hospital). Years later I was having the same thoughts and my GP referred me to talking therapy it only lasted 6 visits but it seemed to help and the therapist was worried and referred me to a private therapist but I had to stop when they put the price up. I find it easier to talk to a therapist than someone I know. And I found out that I was just off loading my thoughts on to the therapist and I always felt better after a visit and felt normal for about a week until the next session, maybe it’s something you could look into ( I did try medication but it didn’t work for me) good luck. Kevin
Thank you kev60 for sharing your story. Depression is a painful process. I have found that this site has helped to over the last 24 hours to try and deal with my discomfort. Thats the great thing about this site. In some ways its speaking the unspeakable on this non judgemental and supporting has a liberating effect.
and yes, like you medication did not actually work, ( In my case ,it made my breathing a little more laboured) plus I didnt like the feeling that I was in some sort of fog.... Please use this site as a springboard for your emotions too. Its cheaper than a therapist...😉
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