Lack of general understanding.

I'm not sure how to get across to people what it feels like to not be able to do the things I use to do.I have always loved doing jobs a round the house,garden,car plus helping others . I just loved walking at home and on holiday now I can hardly find the strength to do anything. I talk to my family and friends and my doctors at hospital but it seems as if they think telling me I have to learn to live my life with a outlook that means only getting worse with no hope of being able too ever do easy things without being ill. I hope someone out there understands what I mean. I always read posts that people write but I don't usually post myself.

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31 Replies

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  • Hello JR1951 .

    Yes, I understand what you mean. I recently told my pulmonologist that I feel like there are fewer and fewer things I can now do without a struggle. He looked resigned and said "You must adjust your lifestyle to suit your illness". And that was that. It's frustrating as you well know. I have tried to keep doing things I enjoy but just doing in little bits and pieces so as to not get too exhausted.

    Let's not give up completely these joys in our life. They are so important in keeping our identity. I am determined that my illness will not rob me of everything. Wishing you well.

    Cas xx 🌿

  • Hi

    It's more common than you think, people all to often only see a visual disability which they can either avoid or engage.

    With a hidden disability they have nil understanding. If I go to door as normal the person expects a normal conversation, or to do any request they ask.

    Wearing my Ambulitory oxygen gives me some concessions. But the best is when I use my scooter in the supermarket, people have offered to load my shopping on to the counter for me, the cashier always packs my bag and even offered to come round and place in my scooter. People often ask if I am ok when loading my scooter, despite the fact I am using a hoist.

    I am the same person the only difference was the visual equipment.

  • Me too Stone, using oxygen leads to offers of help when doing a supermarket shop which I gratefully accept with a smile.

  • That's one of the advantages of being really old. Not only are you knackered, but you look knackered. :-)

  • Hello i dont know where you are with your condition. I find it can be a bit of a roller coaster. You have tomes when you want to do things and can do a little bit more

    Then there are times when you feel like you will never do things again. You have to try to reach some balance. You need to be positive look at what you have achieved each day and congratulate yourself. Try to do more if you can and dont be hard on ypur self when you cant. Take care.

  • I know what you mean but I also agree with what the others are saying. We do need to take things easier but never give up. Keep posting and let us know how you are. Love Bernadette 😳 xxx

  • I guess it can be difficult for others to understand the frustrations and difficulties of living with a chronic health problem, to live in a world which seems to be shrinking physically.

    Sometimes the only thing that keeps me going is hope....acceptance I find difficult to do....but being angry with myself doesn't help. Especially in the middle of the night ....thank goodness for the Internet which has widened my mental world and given me meditation and relaxation exercises.

  • Hi JR,

    I think the conditions get us all down at times frustrated because no one seems to "get" the issues. I ended up speaking to my GP a few days ago as it was getting me down. Now getting a little mental health treatment which, I'm hoping, will help.

    Have you considered that option? It's not going to make us better but might help enjoy what we have whilst accepting what we no longer have?

    I've spent months building to this ... talking to a GP about mental health (and me being a bloke) doesn't come easy. Why not try it - after all it costs you nothing and, if it doesn't work at least you tried it?

    Best wishes

  • I have a great gp I can talk about anything to him being australian he has a wicked sense of humour when I mentioned mental health iss=ues starting all he said "can't have you being one sausage short of a barby" ad that is how we continue our conversations these days like when I said this barby is running short of fuell too often he took his time in explaing my illness why breathing gets ragged and what I cean expect to come, you see we have built our foundation on a humble barbq you never get baffled or blinded by science or big words.

  • I had a South African GP for twenty years who was like that. Makes all the difference, not like now where you get your ten minutes and it's out the door!

  • The 10 min rule is comon to most surgery's these days if I feel I may need longer I always ask for a double appointment.

  • I understand exactly your frustration,I'm having the same problem myself trying to adjust.I used to walk up to 15 miles or more daily in my job,now I struggle after 15 minutes.I have to add though this isn't all down to copd as I have arthritis too,which seems to exacerbate the problem.All people on this forum will understand exactly how you feel,so you are not alone.Think positive.

  • I too understand what your saying and there are so many things I can't do anymore and its frustrating when people dont really understand emotionally what we have to come to terms with, I try very hard not to think of what I USED to be able to do but focus what I can do now and some days I can do lots :-) those days make me feel good ........ have you been to pulmonary rehab ? they can really help with exercises and teaching you how to pace yourself so you get the maximum benefit what you personally can do :-)

    Take care and keep on smiling :-)

    Lesley (Cales)

  • i think we all have these frustrations and anger, but I am afraid we all have to try to be positive and cheerful. Since we moved house last year and changed hospitals to a centre of excellence I have found that each visit has meant they find something else wrong, and that has really got me down, as well as finding I am struggling to do simple things like unloading the dishwasher or picking sweet peas. People do not understand and even my husband yesterday made a comment which shows he really hasn't a clue. Yes, we do have to live with our illnesses, but that doesn't mean we have to like it. I am waiting to see a counsellor, which I hope will help, and that might be a way forward for you. Good luck, you are not alone.

  • Explain it to my friends by reminding them what they can no longer do compared to when they were 10yrs old. They soon get the message lol lol x

  • Hi JR it's so frustrating isn't it? You may well find you can do some things but more slowly and carefully without overdoing it. Pete has to pace himself. Xxx

  • Oh we understand you alright, the sadness, frustration and coping with what people say in their ignorance.We have to be the bigger people here because sooner or later we or our families will all experience chronic illness. For me I take each day at a time and if I manage to do 2 things off my list (of hundreds lol), then i feel like a winner. In this forum you are not alone and among fellow friends that have probably experienced similar to you.

    All the best

    Annie

  • I so empathise. My family and friends are used to me getting on with it. As we all know, these conditions mean that when we have a flare up our routine and socialising is disrupted. I find that when that happens I am on my own until I get up and out again. Going on a shopping or site seeing outing with friends who 'know and understand' my condition can be torture as they just march ahead, leaving me to feel an idiot, trying to talk to their back.

    Last week I was verbally challenged by one of the members of my book club because I was parked outside the venue with my Blue Badge. 'why do you have a Blue Badge' she demanded 'you look fitter than me'. As she had stopped all surrounding conversation I waited a couple of seconds then replied

    'if you would like my heart and lungs I will give you my Blue Badge to go with them'

    Try it some time. The reaction is very satisfying!!

  • Sounds like you need a really good support friendship group.

    Can I ask where you live?

  • I live in Creswell in Derbyshire

  • Have you a local Breatheasy or singing4breathing groups ? It's a shame that your the other end of the country to me

  • This is an excellent forum for airing your inner most feelings and thoughts, you will always get lots of support and loads of understanding. Each of us I think grieves for the life we have lost and because most of us are, shall I say members of the older generation adapting to change is difficult. All of us,I think, get on with adapting as best we can, I know everyday at some time, I will think or say, why me, I never smoked, I always tried to live a healthy life style. It gets me nowhere so I have to get over it and try to move on. Sometimes its easy sometimes its not sometimes I want to scream and cry but more often than not I shrug my shoulders and just get on with living my life cause because I still have it and I am determined to live as fully as this dam illness and all the things it has brought with it will let me. I wish you well and truly hope we find a way of coping 🍀🍀

  • We certainly do 'get it' totally. We have all experienced what seem to be a series of losses. Like many others here I have had health issues all my life and people seem to think I'm used to it. No, it's a struggle, especially with age and other health issues. I can relate to what littlepom was saying about being out with others, sometimes we endure rather than enjoy.

    Saying this it is important to concentrate on the things we are lucky enough to be able to do. It's ok to feel so very down about the losses some of the time but we have to try to adjust. Life will be different but it can still have some quality and you have more control over this. Unfortunately you cannot control others opinions of lung conditions who don't experience them. Ignorance is not their fault. Lung conditions are not the 'sexy' side of medicine.

    This is where forums such as this comes into it's own. Everyone here has experienced and still experience what you are feeling and understand.

    I think our lovely y-not had an excellent post and it might be worth thinking about going down that road - it might help.

    Whatever you decide I wish you well and know we are always here.

    cx

  • I'm in the same boat, I feel and relate for you all. Your all in my prayers and on my mind. Good positive vibes I'm sending to you all. Hang in there, God bless, camie

  • know the feeling only two well it is a trial from getting in the morning and attending to personal hygene this year was the start of many to come when I have a carer in the shower room with me male or female I am not bashful anymore just had to accept it is the way this disease is telling on the body and now I accept I need help sometimes, so take what is offered, like us all on here we have good days and bad days it is getting throughmentall the bad ones that I am finding a trial mentally as well.

  • You are now with many people in the same condition. I now can only walk a few steps without sitting down. Something comes to my brain, "I felt sorry for myself because I didn't have any shoes...until I came upon a man with no feet."

    Spend time helping someone that has it tougher than you. God bless

  • Agree with Stone. My visual aid is my stick which often gets doors opened for me and offers of help at the counter in cafes. People often ask "are you better now" following a stay in Hospital for instance without understanding that we cannot get better from this illness. Friends often say "you look well" I always answer "yes thank you, its the steroids". It is so frustrating and upsetting when we cannot do the simplest jobs say in the garden but the courage is in knowing we are only going to get worse over time and still getting on with life with a smile and with love.

  • Everything has been said in these excellent comments really. I'm a once very competent man able to do all the construction work around the house. Now, a useless lump, I have to pay others to do it. I think the person who pointed out it's grieving for lost abilities is absolutely right. I do compensate to an extent by intellectual rather than physical pursuits but I do also get very angry at my own incompetence and contrary to the comments about it being useless to scream, I find it cathartic to curse myself roundly rather than suppressing the anger.

  • It must be so hard for you to have someone else do the work - I would imagine it would be very frustrating if it is not up to the standard you would have done it.

    I have a gardener who is a lovely man and who is a grafter but I am still lucky enough to cut stuff back and do the planting and the smaller front garden in the main. I would hate to have that joy taken away. I know it will be but until then I wil do a bit at a time and then I will defo curse and scream!

    cx

  • Hello , as others have said - it is hard to find the positive, hope it helps you to know you're not completely alone x

  • Well done for posting - I know exactly where you're coming from JR. It's so frustrating. I'm not knocking anyone but people do a lot of nodding when you try to explain how you feel. I've tried to keep active but find it difficult and tiring - It's not easy

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