We often talk about our symptoms, our ailments, our medication and treatments, but we don’t often discuss aspects of the emotional side of suffering from, or caring for someone with a progressive, potentially life changing or terminal disease.
I have severe, stage 3 COPD. With me it’s Emphysema and Chronic Bronchitis. Last week I was also diagnosed with IPF following a spell in hospital. When they put me in the ambulance, I was terrified. I genuinely thought I was dying. My oxygen was low, BP was up at 169/115, my pulse was low, but most frightening for me was that my throat had almost (I thought) closed so that I was barely breathing and making a kind of animal sound.
I’m back home and slowly on the mend now. However, it’s made me think a bit more about how life has changed so much for me and my family because of my illnesses.
I was first diagnosed 10 years ago, and stayed relatively unscathed for the first 7 years, and then went downhill. The last three years have been emotionally and physically the worst of my life.
Three years ago, I was running my own business, had a big circle of friends, happy and calm home life, few money worries, happy healthy marriage with trips out all the time, holidays etc, life was very rosey! We decided at that point that we wanted to move North, to be closer to my grown-up daughter and her family, and that’s the point where things changed.
Over the last three years, my health has deteriorated, and my emotional strength has frittered away. I never used to get upset by much, I wasn’t a worrier, everyone relied on me for strength and support, and I was proud to help. That’s all changed now
Now I feel guilty, feel like I am always having to ask for help. I feel anxious about ‘causing’ so much distress and worry for my loved ones. As my needs have changed, their lives have changed. I can’t help having an affect on them, but that doesn’t stop me feeling guilty about it
It’s bad enough being ill, but I hate the associated guilt even more. Everyone tells me its fine, don’t worry, it’s ok etc but I can’t help how I’m feeling. Sorry for the moany post guys and girls, I know that many of you are having a much tougher time of things than I am right now.
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BrianTaylor
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Hi Brian don't feel guilty about your illness you cannot help it. You sound like a very nice man who's been a rock for your family, now let them be one for you now that you need it. I'm sure they're very glad to help you and don't mind doing anything for you to help. So don't stress yourself up about it, I know some of us like myself find it really difficult to ask for any help in any way. But you must reseign yourself to it and relax about it and joy the fact that your family all love you and are there for you. All the best Brian 😁
Thank you Popie for your lovely reply, that’s really kind of you. Trouble is I know I shouldn’t be feeling like a burden but I can’t seem to help it at the moment. A good chunk of every single day seems to be about me, and I’m never going to be comfortable with that. Thank goodness I can come here and let off steam! Take care x
Hi Brian, life can be such a bummer can’t it! Peaks and troughs people say but what about when the peaks seem such a distant memory? What then? I think it’s natural to feel guilty as you’re family are going through everything with you.
You’ve had a real shock with the IPF diagnosis as have your family but don’t beat yourself up Brian. Thank goodness for sites like this eh.
Pete said to me yesterday that he feels lazy because he’s unable to do very much. This is from the man who’s suffering flash backs from his time in hospital with sepsis and struggles to breathe. I just try and reassure him and urge him to speak to the UK sepsis trust.
In time try and focus on what you can do and still enjoy doing as a family. Live for today, nobody knows what tomorrow holds.
Sending love and hugs to you and your lovely family. Take care xxxxx😘😘😘😘
Hello to you both, and thank you for your kind words x.
Poor Pete, I know exactly what he means! Can you help with my socks/shoes/meds/driving/explaining etc etc it makes those who suffer feel lazy and incapable, and those who care for us very tired. It’s not normal for any of us, no day is ever normal again, regardless of what stage we are at or precisely what our illnesses are.
Getting our heads in a good place is, in my view, potentially more important than getting physically better. Take care and regards to Pete. xx
Ooh now my mind is ticking, could be dangerous! 🤣 Someone needs to ask our friends at BLF. It could be a big meet up with info help advice and food! What a day that would be. I’d love it xx
I think you pretty much covered the spectrum. These are real truths and valid stressors. I’m in the same boat. My wife takes care of me however it would be ignorant for me to think she’s enjoying all this change.
Hi Apeter. I’m sure it’s true to say that your wife is not enjoying it any more than you are. My wife is the same. Trouble is I’m really not sure what the answer is or if anything can make the situation any easier to accept. Take care 👍
I know exactly what you are saying I managed to work as a mental health nurse for 42 years then diagnosed with emphysema 9 years ago and also had asthma yes I smoked but also worked in a smoke environment prison struggling like us all.
Hello Soul-123. Thanks for your reply. Like you I smoked, and worked in a smokey, dusty atmosphere many times. I managed to quit when I was at Stage 2, which was about 10 years ago. Mind you, I found stage 2 much easier to deal with on an emotional level! Take care.
Hi Brian and all, you are very lucky to have a support network. For me, I was diagnosed last year with stage 3, severe, and have not told anyone, I don't have children and my sister lives 300 miles away and has her own life . I do have a boyfriend, but have not told him as I am scared he will leave me in the future, like my husband did after 20 years when I was diagnosed with cancer. So for me, it is my secret and I am putting on a brave face, going skating to improve my fitness, but inside I am as scared as he'll for the future, so am trying do enjoy myself now whilst I can and am able
Hello Skatergirl1. I’m so sorry to hear that you don’t have a support network. I can’t imagine how hard it must be to not have anyone to talk to. Thank goodness you have this forum! As I’ve said before to you, I am also stage 3, so share that with you. I know you don’t know me, but If it helps at all I am more than happy to talk to you whenever you need to talk, about absolutely anything and everything, especially your illness. You can message me privately or post on here and I’ll be happy to help if I can. Take care and look after yourself, keep smiling and keep skating! Brian 😊 x
Hi Hoobs, no problem at all - ask any questions that might help. With me, my FEV1 is now 30, not sure what it was at stage 2, sorry (can’t remember lol)
When you were fit you, quite rightly, helped your family and friends. As you have said they relied on you. When you were fit, if you saw a friend struggling, unwell and feeling guilty for asking for help would you ever have said "You should feel guilty. Your poor family having to do things for you"? No, of course you wouldn't. You would have helped the friend.
Well now it's time to be your own best friend. Allow yourself to accept any help offered and if you need more help say so.
It's your turn to be helped.
It took me a while to accept not being a fully functioning and independent being. Now I do get help from family and friends and surprisingly am able to help them too. Nothing physical but form filling, a bit of knitting.
Maybe not but have a think about any non physical talents you have. I'm sure there are loads of things you know/can do. Of course you could look on u-tube for knitting lessons ... well sailors used to do macrame and a male teacher at school (many years ago) saw his wife making woven pictures, gave it a try and got so good he had an exhibition. xxx
Yes, I think I need to rebalance myself and think it all through. With my latest diagnosis there is a lot to take on board but I will get there. Still not sure about knitting though lol xxx
I had a similar issue when my Mum was ill. I myself have multiple illnesses and I've always been fairly emotionally strong about them, but in a way that was a negative thing because I felt like I couldn't show weakness, and even to a point couldn't recognise it in myself. So when my Mum was ill I wasn't talking to anyone about how I felt, because I didn't want to be an extra worry for her and my family, and because I thought I was coping. I got to the point where I basically just snapped.
I was so worried about the effect on other people that I wasn't thinking about how much of an impact it was having on me. One of the things I learnt from the whole experience was that I needed to talk to people about how I was feeling, and actually they wanted to hear. In fact it worried them more not knowing how I was coping. It's still not always easy but I am a lot better off than I was in that sense.
I have never blamed my Mum for how I felt. I just wanted her to be well, and I didn't want to worry her. If anything I was upset because she wanted me to be happy, but that's difficult when your Mum is dying.
Please believe me your family cares about you, they know you can't help being ill, and they want to help you.
But if talking to them about it isn't easy we are here.
Thank you for your reply Lucy, and I realise you are right. We can’t keep all this in and it’s normal to need to share. It’s really difficult though as you obviously know. Take care and warm wishes to you and mum x
Hi Brian my husband has PF he was diagnosed 3 years ago and stupidly not knowing anything about the illness, looked it up on Dr Google, big mistake. Reading your post has made me realize how he must be feeling. His whole personality has changed, he has no interest in doing anything anymore, he used to love to play his guitar and was not interested in watching any of the soaps on TV now that is all he does of an evening. He was always very active, loved projects around the house. He does exercise as he knows how important this is. We still go out socializing with friends but he is always very quiet. On the upside, last time he saw his consultant and had an ex-ray, his lungs had improved which was fantastic news. This we believe is down to cannabis oil (with THC). We live in Spain so it is easier to get hold of. He takes it in capsule form and sprinkles the raw cannabis over his food. He takes it of an evening and he is one of the rare people that never gets “a high” with it (which could be a pity with his lethargy). It is such a pity that they cannot legalize it for medical conditions. So if there is any chance of you obtaining the oil, thoroughly recommend it. You sound like you have a lovely family and I am sure they feel like me, very sad this has happened but would do everything to help, All the best to you. Carole
Hi Johnsel. Thank you so much for your reply. That's the trouble, it is so hard 'not' to Google when you have unknown things to face! I really feel for you and your husband, and I completely see why he feels the way he feels. As for CBD oil, I have decided that anything and everything is worth a try, and have been given some CBD oil to try. I hate the taste of it, so after doing a bit of research have found that there is a mint flavour? not sure if this will be worse or better but I am prepared to give it a try. I really want to have faith in it, but part of me feels that if it really was such a miracle cure, some company somewhere would be making a bigger deal of it to earn themselves millions by now? I don't know. Worth a try like I said. Take care of yourself and your husband, I am thinking of you both. Brian x
I found I had to change my self-image when I was faced with my changing physicality. We often have a persona we aspire to - say, heroic mountain climber, hard worker, go-getter, never off sick, the person everyone else can come to for help. That's OK while it's valid, but with illness that persona may no longer be helpful. I thought out new roles that I could fill which respect my change in circumstances - say, musician, person who has time to listen to others, encourager.
It's okay to mourn the loss of health, just as we would mourn the loss of any other significant thing. Give yourself time to work through the stages of grief. And cut yourself some slack - you didn't choose to become this ill, it just happened. Try to be grateful for the help you are offered, rather than resentful that you need it.
Hi Ergendl. Thank you for your reply. I haven't thought of it from your perspective yet, but perhaps it is time that I did. Having a progressive disease eats away at your persona without you realising. The guilt and occasional self pity creeps up on you and you don't know it is there till it is staring in your face. I think changing your self image is probably easier for some than others? I realise though that I must do something, as I don't want to just give in and roll over. I am not sure that resentful is the right word, although I completely understand what you mean. Thanks again for your thoughtful reply and kind words. Brian
I'm sorry to read about this new diagnosis. Sometimes it seems as though we never get a break from it. 😑
I can assure you that your feelings of anxiety and guilt are all too common amongst us. Everyone has given some really helpful and uplifting comments, but I just wanted to add that in ways you do not and cannot realize, you contribute and have contributed, and continue to contribute, beyond measure to the welfare and happy state of your family. You are such an essential part of their lives and happiness.
If the roles were reversed, I haven't a shred of doubt in my mind, you'd do exactly the same for them. Take it easy and enjoy the spring. 😊
I really look forward to your replies as you always have something lovely to say, thank you so much. In fact, as ever, this community has offered kindness and friendship, something that isn’t often seen elsewhere, so thank you all. Cas you are right. If the tables were turned with a loved one I would do exactly the same as they have done for me. I’m a very lucky man. Take care. How is your lovely dog Chom doing? 😘 xx
Hi Brian, my dad has IPF (to be confirmed, or not, tomorrow!). I can totally understand how you feel as I can see it mirrored in our situation. My dad was always the one who could 'fix' things. He was always busy with his garden, the 'river' he constructed, the pond he made, his garden railway, his indoor miniature railway, dogs, diy for himself and others. Now he struggles to get out to the garden hasn't been able to do anything much for months other than watch tv which has gradually dragged him down because he can't 'do' anything. He has put everything on hold until tomorrow when he gets his diagnosis.
From my point of view as a daughter, I have seen the strong, determined person I love crumble away and be replaced with someone who is frightened, anxious and broken. I am watching my parents bicker and stress over oxygen tubes and connectors, and my mum struggling with my dads lack of apetite as she has always cooked snd baked to make things better and thats not working.
It all hurts but the one thing that makes me feel better is knowing that I can help. I go over on my own or with my family and my mum can bake and watch it be enjoyed. I take them out for lunch and we chat and people watch. My brother is trying to help more practically with the garden etc. But as hard as it is to see how this illness has changed him and his life I am so grateful that I can help him now as much as he helped me. I dont feel that he is a burden, I almost see it as a challenge to prove to him that he is as important now as he was then but just in a different way. I am doing things for him that he has always done for me and I really honestly dont mind, it is almost a comfort to know that he needs me. I think my mum is struggling because she is taking the brunt of his negativity and her life has had to change as much as his. Its a shame they dont offer some family counselling because I definitely think that talking about it all helps.
I hope something of what I have said helps. Please dont feel that you are a burden, it is hard for everyone but your family love you for who you are not who you 'were' and will be happy to help you with anything and do it because it helps them too xxx
Hi Wellyboot. I’ve not been on here for a couple of days so have only just read your reply. And my goodness what a lovely reply it is! I now have a tear in my eye and a lump in my throat. Thank you so very much for your kind words, which I read and showed my wife, who also said how lovely it is.
This forum is truly an amazing place. I can’t use it every day as emotionally it pulls me in all directions. Stories of hope, stories of despair, incredible strength and understandable weakness, stories written by ordinary people like you and I with often extraordinary tales to tell. It’s a complete mix of happy and sad, where we can hear about the devastating loss of one of our lovely members, and the next minute be reading about an exhilarating dog walk on the beach. I’m far too emotional to visit every day, but I log in as often as I can.
Your family sounds incredible, and your story reminds me of our family. Your parents sound as if they are facing this bravely, while you are obviously a gift to them with your incredible loving attitude towards your family and everything that’s happening.
I’ve got three grown up children, two younger children who live with me, and although I still swear I’m not old enough, I have four grandchildren. We are a very close family, I brought up my three older children as a single dad, and that’s how we stayed for 12 years. I married Sara and we had two more girls, and now all five are ridiculously close, to each other and to us as well as their own families. Lots of love in this house. Whatever the outcome for me, I smile every day and that’s how it will stay.
I won’t know any more about my illness until I’ve seen my consultant and probably yet more tests. I saw that you have posted about your dad and his trip to the consultant. It’s enough to sweep your legs from under you, but I honestly feel that you and your family will face whatever life brings with courage and grace, and a huge lashing of love
Feel free to message me if you ever want to talk about it. I’m a good listener. Take care. Much love and thank you for your lovely reply xx
Thank you Brian. I totally understand your emotional rollercoaster with this page, I do feel the same but know that people when they are on here are all in a similar position to ours and it is so lovely that we can all support each other from every aspect.
Had a phone call today say that my dads appointment tomorrow has been cancelled They have told him that he will be getting the medication for IPF and he will get a new appointment in the next couple of weeks. In a way it has softened the blow and it gives us time to digest it on our own in our own surroundings rather than the clinical surroundings of the hospital x
Hi BrianTaylor, your post was very real. It touched me as I too can understand how you feel. I have recognised a major issue is maybe we cared so much about others we forget ourselves. When we are being looked after it is done with love and received with gratitude. If the shoe were on the other foot I’m sure we would not hesitate to do as much as we could for our loved ones. I wish you and your family well - we are very lucky to be surrounded by so much love and support in testing and tough times 🙏🏼 Roz
Thank you Roz, it’s definitely true that I would, and already have when needed, looked after my own family. I’m trying to approach this with an open mind and a smile on my face if I can. Take care and thanks again for your kind support xx
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They have told him that he will be getting the medication for IPF and he will get a new appointment in the next couple of weeks. In a way it has softened the blow and it gives us time to digest it on our own in our own surroundings rather than the clinical surroundings of the hospital x
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