really dont understand

Hi . its 5.00am here in Suffolk UK. I have been awake most of the night coughing, inhalers to hand and I am so tired . My husband has a headache and I am the one who gets out of bed for paracetemol for him (he is dying ??????).I am so sorry to be so miserable but I hate all this coughing. It has now been nearly 2 years since this all came to a head and whilst I know I dont have symptons anyware near as bad as most people, I am terried of what is to come. The Nurse practitioner , who is brilliant by the way , says I have mild COPD and that it can be well controlled withe the inhalers,the indigestion with OMOprez.., other tabs to make sleeping why do I feel so S**t ?

I have never smoked, was reasonably fit , yes need to lose some weight and am so tearful I shall soon drown this laptop.So sorry to be so miserable but my family still see me as the perpetual housewife/ mum, my husband dosnt seem to understand that I really am too tired for sex a lot of the time . So if anyone has any suggestions to buck me up they would be so appreciated.

44 Replies

  • Hello thecakelady,

    I have the same with my husband, I have been diagnosed with severe COPD and he just does not get it, in total denial and wont talk about it unless he gets angry then he is really nasty. Your sound like you have depression, do you have any close friends you can talk to? ring the BLF as soon as you can, they will understand. But hey, if you want to message me and let it all out I am ready, and it will probably help me too as I am totally alone here apart from my husband xxx

  • thank you so much, i am basically alone , my one real friend has more than enough of her own probs without mine as well.Does the prospects of what is to come frighten you? I am terrified...sometimes I am coughing so much it is hard to breathe at the same time ...I know I prob dont have to tell you this. My daughter just seems to see me as the bank of mum and babysitter to my beautiful grandson. Truth is he is the one who prob keeps my spirits up , even though at 4 he is quite hard work...but he loves to walk and we go to the forest...otherwise i would prob be stuck indoors . My husband is at part time from home, has no sense of adventure or get up and go ...really annoys me as much as i love him.Tried to get him to rent our house out for a year so we could go travelling as dont know how this dam thing is going to affect me in the years to come....but says why would he want to travel abroad....sometimes i could scream...inside me I do

  • It does scare me rigid, and it is worse because noone can tell me how long or how quickly. I do love my husband but he has shown a side to him that is not nice, and to be frank it scares me to think that I will need him and I really dont think he will be there. I want to sell the house and travel, something we had discussed before I was diagnosed, but now he wont do anything, just sleeps and drinks.

    I try to be happy, and I have a German Shepherd that I adore who keeps me sane and exercised, take comfort in your grandson, you are so lucky to have him near xx

  • everything we had planned has also gone to pot . I had to cancel our christmas / new year in Newyork dec 2012 as he wasnt prepared for me to get sick away from home.moving house to scotkand was camcelled would be too cold for me ....the cotton wool can be just as suffocating. my grandson is my savior...he will be here in 2hours then we get the bus and go to the park...does both if us good .....thank you so much for being therex

  • And thank you, it made me feel a bit better talking about it have a lovely day, always here xx

  • He's wrong there, it does get cold in Scotland but the air quality is much better and my consultant told me to go on my holiday when had pneumonia, It did me the world of good. Xxxx

  • Like I said to lady above joining a local COPD or BREATHE EASY Group with likeminded people could help to help your husband family understand. Also you may have to go on holiday without them if they wont go with you

    You could join travel groups etc at the U3A etc and get to know people who you may go in a group. I belong to local Community Choir the singing and friendship do wonders for your health and spirits and you dont have to be a good singer at all. Some of these do short trips to sing somewhere else and then there are the concerts. It gives you something to look forward to, builds uo your breathing capacity and strength and brings fun and friendship xx

  • You and me both Cakelady. I'm expected to carry on as if nothing is wrong.

  • Cakelady, You will be able to travel, but please take it easy and do the coughing up exercises to get clear of this tenacious cough of yours. Be patient!

  • in the winter months you need to get out and let the sun or daylight strike your eyes for two hours minimum

  • Hi, I'm in Suffolk as well, near Bury St Edmunds. I think because this is an invisible illness, most people don't understand how bad it makes you feel. My ex husband walked out just over a year ago as "he couldn't cope with me being ill all the time". He forgot to mention he'd been serially cheating for over 2 years! My daughter shows no understanding, and I'm just treated as an unpaid sitter like yourself. It's my animals that keep me going. If you want a chat, possibly even meeting up, then let me know. X

  • thank you so much would be good to have a friend in similar circumstances

  • Hi Squidgeum, have you heard about the local Breathe Easy Group that meets in the Southgate Community Centre, Caie Walk, B.S.E.? We meet on the last Thursday in the month, I.e. 30th January from 1.30 p.m. - 3.30 p.m. We have interesting speakers and the group is very friendly and supportive. We also have coffee on January 16th at the Regency Hotel, Looms Lane at 10.30 a.m. we would love to meet you and have you join our Group.

  • Hi skinnylizzy59, I didn't know about the group, no. I will see if I can make it on the 16th for coffee. How many people are usually there?

  • Hi Squidgeum, if depends which day we have the coffee meeting, we don't always have it on a Thursday so it varies from 5 to about 12. It's just a relaxing 'me' time where we chat and get to know one another, I do hope you can make it, of course I won't be Skinnylizzy59 then but I'll soon know if you are a new visitor. Take care, Lizzy.

  • Squidgeum , Sounds familiar..........!

  • Did this happen to you Hollyhockhattie?

  • Very similar story to yours and thankful for my animals... I'm also seen as an unpaid babysitter ( not that I mind the grandchildren), but when I was really ill ,undiagnosed and struggling to get dressed even, I was shouted at for being too slow, shouted at and accused of not wanting the grandchildren! Didn't come to see me in hospital for two weeks... had no change of underwear, any night clothes, money, etc, etc. Nothing at home for me after being discharged . Told ... well your not dead are you .. why are you home then? and on and on. It is depressing and I used to cough so much there would be tears streaming down my face , heart beating so fast and no energy left to give a hoot .( That was then). , I have joined a breathe easy group now and got myself involved in little ways. I see my hospital consultant regularly. I know that I have a condition to be managed and that if I don't look after myself then no - one else will. This community site has been like gold dust for me ,, very supportive and understanding! There are also other issues to share that don't help with the actual illnesses that we share and this is the time to private message each other when ever we need to . Don't be too down ... It's good to talk ... please remember this. Holly x

  • Hi thecakelady, bless you, listening to you and the friends who have replied to you looks like there are many of us in the same boat (if this helps). I have mild bronchiectasis, coughing most of the time and sleep apnea. My husband and family sound just the same; they just don't get it either

    It is so upsetting at times and feels like they couldn't give a hoot. I think the problem is they don't even understand how these medical problems can wear you out. As you mentioned they only get cross when you say anything about it.

    A little TLC occasionally would be nice. I'm not much help I don't suppose, however, I feel for you. Take care. June xx

  • thank you for caring ...a little means such a lot ...shame my family dont realise it

  • Hi the cake lady I think like someone else said you can't realy see the illness progressing people don't understand I have emphysema and i am a smoker I am battling to give it up trying so hard but people puss me off so much I am so tired all the time still working cause all I get is we can't afford you to stop working so I battle on like you my dogs keep me going they seem to know something's wrong this sight is great because people understand and are always willing to help

  • I do know how u feel i have never smoke and 2 year was tested for ALPHA 1 & 3 month told have COPD my family are the same i came from a family of 14 which was hard lost both mam & dad and sister 2 years ago which she died of what i was tested off sick of not been able to do anything so tired all the time out of breath and sleep downstairs to out of breath sick of bad chest and sickof pill x

  • So difficult when the "Downs" come and come they matter where you are or what you are doing. I don't think it's restricted to COPD, it's seems to be common with every life changing medical condition. Hard to say but chin up and look for positives. So you are a tad overweight....that means you have money to spend on food...certainly praiseworthy. You have to get out of bed to fetch and carry for him....fantastic...that means you ain't homeless...more praise. Mrs Cake Lady, I am not trying to make like of this terrible situation, just trying to say there is another side to it...once you shake it off. The one thing that I noticed that was missing from your "ME" time. That is so important. Make time for yourself. Twice a day at least, I have ME time and that is when take my medication. Just 5, 10, 30 whatever, minutes to myself. I sit back or lie down, put on some relaxing music, take my time with my medications and do you what? The inhalers and powders and pills, all seem to work better. Most important part of "ME" time is that my family now respect that time and no one would disturb me for anything trivial. You have to work hard at it but once the folk around you see the advantages of your ME time, thay will come around. When you feel up to it, please give it a try. Chair, bed, bath...(not so good in the shower) or even the garden shed.....ME, Me, Me.

  • Have you any COPD or BREATHE EASY Groups near you not only to help you manage your condition but to give advice on feelings as well. Then maybe your husband and older family could go with you. It helps to be with people who understand and know about all the things you mention from their experiences. Your doctors surgery could also tell you how to contact a councillor not just to help your mental health snd unload privately all your emotions they can also help you to find a way to explain all this to husband and family. Good luck xx

  • Hello cakelady you can tell by the replies you are not alone. My family all males are reasonably helpful and understanding but they can be quite cruel sometimes. I just plod on and do as much as I can and carry on within the limits it puts on me. I also get depressed but then something kicks in and tells me put on a happy face to the world and go grab it. I believe unless you actually have this nobody fully understands. Thank heavens for this forum. Hugsxx

  • Hi thecakelady.

    Sorry you are having such a difficult time, yes it is a lonely old illness and hard for people to come to terms with and even harder for others to understand.

    My problem is Emphysema and very visible when struggling to breathe so my family are very aware that I have problems.

    Perhaps you should let your family read these posts, it might open their eyes to your condition and they will show you more consideration.

    If I was your husband I would pamper you something silly. God knows what my life would have been if I hadn't had such a loving wife.


  • That sounds damn miserable! I don't have COPD I care for my husband who has severe COPD - first of all I would like to address your fear. My husband has had this for over ten years - he is still working full time (at 65) we still go out and have a good life socially etc. So don't worry about it getting worse life will just get slower and to be honest, it will anyway none of us are getting any younger!

    The BLF do a really good information pack - it might be worth asking for it and giving them a ring, they are really helpful (click on the red balloon in the corner) and will be able to help you with some of your fears. AND it might be worth leaving some leaflets out for your daughter to read.

    I agree with the ME time - it took me some time but I am insistent that I do something for myself - I took up yoga and go religiously every week. I also make sure I go out at least once a week for a coffee or a pizza to escape COPD! I am a Mum to three children - well two are hardly children - one at uni, one in sixth form and a 12 year old. Children can be very selfish but I think you have to bite the bullet and sit down with your daughter - even if that means going out somewhere for a coffee and explain to her how down you feel and that things have to change.

    And I would talk to your Doctor - my Mum was quite down and found life very difficult but was given some tablets and they have really helped her regain a quality of life. About two months ago I was feeling really depressed, sleeping all the time, just awful so tired - I asked for a blood test and found that I was vit D deficient and the change since taking the tablets has been amazing.

    I hope that some of this information is of help to you - just concentrate on you and looking after you until you feel better. Take good care with lots of love TAD xxx

  • I am so sorry to hear of your plight. I am not sure what to suggest other than to point out that your health issue is only one problem. There seems to be something wrong with the way your husband and family regard you. In my view that is more concerning than your mild COPD. How can you make him respect you and take you seriously? You should be partners and share the joint load together. Once you have less on your plate, feel loved and appreciated you will have the strength to deal with your health and will no longer be too tired for sex etc. Sending you blessings and good wishes.

  • Hi Thecakelady. That's funny you should call yourself that. My son was with a girl for a long time and they had a child. I have always made Christmas cakes and used to make six at one time. So to cut the story short. This girl used to call me The Cake Lady. Small world isn't it. You sound really down at the moment. It may pay to sit down with your Husband and tell him what you are feeling. Us women have done far too much for the men and it is a follow on from what their Mothers did. It is expected as normal. I would sit down and gently tell him you can't do it any more and need some help. I wish I could tell you something that would make you feel better straight away but I can't. If you carry on feeling depressed I would have a word with your Dr. Keep reading our posts. There's some funny ones that will make you smile and take care. Keep posting on here. We are listening. If we can help. We will. Mavis. X

  • Hi there, Im sorry to hear that you are so depressed I've got COPD and Emphysema with only 26 of my lungs working..You need to out and meet people that has the same complaint as you, is there a local Breathe Easy group near you. Im the sec of Breathe Easy Swansea Bay and when we hold our meetings once a Month we all know what other people feel like because we are all in the same boat, take your Husband with you so he can see how people are suffering, this will give him a understanding of our illness.

    Hope this helps you,


  • I've just sent you a message with my numbers if you want to chat. :) x

  • Hi Cakelady, are you near Bury-St.-Edmunds? Did you know that there is a Breathe Easy Group that meets on the last Thursday in the month at Southgate Community Centre from 1.30 p.m. - 3.30 p.m. We have interesting speakers and are all very friendly and supportive. Our next meeting is on the 30th January. We also have coffee at the Regency Hotel, Looms Lane B.S.E at 10.30 a.m. on the 16th January, we would love to meet you there. Get in touch if you require more information. Keep smiling, Lizzy..

  • Right cakelady! I know where you 're at/ I would advise to take some Codeine syrup for the night; something like Covonia Night Time. Perhaps also some Kalm tablets, it contains Valerian, but it's a natural herbal remedy to calm your heart at night and helps teak the fedupism away.

    During the day, Take your inhaler and wait a bit for it to activate. then put some bolster (or several cushions) on the bed, prepare a disposable cup in which you can cough up. Lie down on your side so your torso and head are on an incline . Stay like this for about ten minutes. Then cup your hands and "gently" clap your hands on the side of the chest and especially at the bottom where your ribs end (you should feel them). Then you turn over on the other side and clap the other side. It's not extremely pleasant, but it will get the mucus up and out. Do rest after each session. Do this every day. The excess mucus will clear with time and you will be able to sleep better. during the night, sleep on two or three pillows so the mucus doesn't get down your throat during the night.

    There's another way which is called Active Cycle of Breathing Technique: here's a video to show you what to do.

    Always rest before and after a session.

    As for sex, you don't have to have your hubby over you, there are other positions which are more comfortable for you and just as exciting. But I quite agree that, at the mo' it's not great fun. Ask him to have some compassion while you're so exhausted and fed up.

    I do hope this helps.

    As Kad said, phone the BLF too for any advice. they are understanding and compassionate (and qualified ).Ask also your GP to be referred to a pulmonary nurse. Nurses are down to earth and well qualified to give the necessary advice and referral to a physiotherapist who would teach yo far better than I can on line. But I went though this process too; so I speak of my experience.

    At the start of this process in 1994, I couldn't finish a sentence for the coughing and spluttering. At church, people brought me sweets, cold water, hankies; they stopped at knocking me down, that would've been Christian. But I could read their faces! Nowadays, I'm free from coughing like this and I go to the gym!

    If all this doesn't help after a couple of weeks, do ask a GP appointment and talk to her. Write down all the details (even the sex bit) and ask for advice and a change of drugs.

    Perhaps, take a sample of sputum to have it tested to determine if you do need some sort of antibiotics to clear your chest. Also ask to be referred to a consultant.

    I really hope all this will help.

  • thank you so much , I cant believe all the support that is coming from this many people caring for each other. I will be taking note of everything that people have said ...brilliant

  • Good for you, take care! :-)

  • I really am hoping you get help soon, I can understand how you are feeling. it is very lonely being depressed, especially when we are poorly, and don't seem to have the sympathy and support we need. Please speak to your doctor, if they don't help, see another. You are not alone, and theres always someone on here to find comfort in. Don't despair, use your inhalers as you should, and rest as much as you can, although exercise is good too. Always have a moan on here if you feel the need. Bottling things up just makes us more ill. I wish you all the best.

  • i know the feeling looking at flats just now want to get away form the ungrateful people that call themselves husband children you now what i mean ? really fed up of being used . o that's ok mums at home she can do it or she can look after (their child) when i say i have something to do its why? and can't you just leave it for now. well i am at the end and feel you know what i have a life as well etc etc so fed up i am really if i could i would pack my bags and leave no money though. so i dream at least they can't interupt that with their selfishness .xxxxxx

  • I could have just written that...I am with you 100%....where do you live ..i am in suffolk...I have been astounded by the response from all the people on this site is like finding a fam,ily that like all these people have offered to help me I am also here if you want to let rip ...I TOTALLY UNDERSTAND WHAT YOU ARE FEELING...TAKE CARE AND THANK YOU FOR BEING THERE FOR ME ...marie xx

  • This is an awful way to live - my mother who brought four of us up on her own was advised by a very good friend of hers when we were little to get a hobby. She chose golf and later bridge - come hale or shine she organised childcare and had her time to herself. I was resentful as a child but she was doing the right thing - when we left home - she had a life. Could I suggest that you too find a hobby for just you and come what may - you stick to it - watercolour painting, flower arranging, cooking, yoga, learning a language - something just for you. You are allowed to - it is your life. Please try to make time for you I am sure you get some "grief" for it - but it will be worth it if you can find some happiness. With much love and kind thoughts TAD xxx

  • Have you attended a pulmonary rehabilitation course yet? It means commiting to 5 hours a week for 6 weeks but the benefits to you will be enormous. Get you husband to go too if he is not working. Excersise regularly YOU CAN DO IT. Walking for half an hour twice a day will do you the world of good and help you feel more positive. Take him to your GP and get them to talk to him/her so he understands what it is you're dealing with TOGETHER.!! My husband and I have just come back from an adventure holiday in Vietnam which took us a year to pay for but it was well worth it. I have severe emphysema and fibrosis of the lung caused by radiation therapy when I had breast cancer in 1987 but I didn't give up then and I'm damned if I am now. Talk to your husband and make him understand that you can do somethings as you did but ASK for HELP to get him to hoover for example. (mine has for a year now) If he doesn't know he can't help you. All the very best, keep your chin up, eat healthily,excersise and take cae of yourself.

  • Hi Thecakelady, some very good replies here from people who understand how you feel.

    I agree with many on here that the first step is the docter. Two years ago and over the following 14 months, I slowly descended into a breakdown through trying to cope with the loss of my partner and this diagnosis within a month of each other, all by myself.

    It took 4 types of antidepressants from the docter, before hitting on the one that is finally making me feel like life really is worth living. I also found this site and the help line.

    I also went to counselling, a mindfulness course and a wellness course. (I still meet up with some of them every fortnight.) all in the last eight months and collectively, they have pulled me out of the black hole I'd fallen into.

    I had the 'Talk' with the family about me not being able to do what I used to anymore, and they appeared to take it on board, but they soon started slipping back into their old ways. So, I keep having to tell them they have to pull their weight.

    I don't let their lack of understanding, upset me so much now because I know that unless someone has the same illness as someone else, regardless of what that illness is, they can't possibly understand how it feels. This has made me realise that I was also taking the frustration and fear of my increasing inability to be superwoman out on them.

    Instead, I've decided, that if I am to be able to cope with this disease, that for once in my life, I must sometimes be selfish and put myself first, whether they like it or not.

    I just tell them they have to pull their weight because I CAN'T do it.

    This seems to work much better than trying to explain how tired ect... I feel.

    Please stick with us until you start to feel better in yourself, because you will, believe me xx

  • Dear Thecakelady- Marie ... I've not been on here long and you are correct the people on here are "amazing". What can I say.... Flipping men!! Lol You must be a much stronger person than you realise, babes I'm sending hugs kisses and fairy dust for YOU! Listen to the advise on here hun and you'll be just fine, things WILL work out good for you. I know this might not mean much right now but maybe your family are scared, for you and for your future and there's, maybe they just don't know how to express themselves in a kind and caring manner. I'm NOT saying I agree with the way they have been treating you!!! My hubby hasn't read and won't read about copd, it's my daughter who has told them all how serious it is as her partners grandma passed away and she (grandma) didn't even tell her husband she had it!!!! They thought it was Asthma. In fact it was my daughter early last year suggested to me that I had copd and that she was very worried about me. I have to say my hubby and kids are guilty of taking what I do for granted (my fault really as I allowed it) before for a while, but as soon as I was diagnosed with copd they couldn't do enough for me even my hubby has even started doing the washing!!! When they hear me coughing they come and ask if I need anything sometimes I feel guilty and try so hard to stop the coughing because I can see the worry in there faces. Listen lovely thecakelady remember the song... Always look on the bright side? I've downloaded that to my mob. Maybe you could, then earphones in and do a bit of walking in the sun! Thinking of you Xxx

  • Know how you feel, just literally 30 mins ago discharged from Ipswich hospital with yet another exherbation of COPD . Tears in my eyes, 2 hours waiting for pick up by family, waiting and waiting. 15 mins in the house and gone, alone again. Ringing for ambulance at 4-00am is frightening and lonely . Also in Suffolk and would love to talk toyo u but do not know how to get my number to you.

  • if you click on a persons name their profile page will come up. Click on the send a message bit and you will be able to send a private messgae that no-one else can see xx

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