Sorry if I'm repeating myself as my previous post seems to have disappeared
I once again have had my appointments cancelled for my consultant and my lung function test and have not received a scan test appointment at all
I was diagnosed after having had scans ect last year with lLD told I've heavy scarring of my lungs due to working in building trade after previously going to Drs with breathing and chest pains for 6 months after seeing my consultant I was told I needed to be monitored on a regular basis to see how my lungs were coping .since then I have had 3 weeks of chest infection in January which my local GP prescribed biotics and steroids I was supposed to go in March this year to see my consultant and have scans but since March I have had my appointments cancelled on a regular basis with the last ones in October cancelled .I have found over the last few months when walking my dogs I am having to stop more to get my breath I am extreamly tired most of the time and want to sleep .My wife who doesn't understand at all is 66 and fit as a fiddle says I'm just very lazy and need to push myself and get a grip .I've always been very active I worked in the building trade all my life and now at 64 can't even get a hoover out without being exausted, is the way I am in my head is my wife right am I lazy I don't know what to do it just feels as if we are all being put to one side since this covid ...Sorry think I just needed some sort of release..
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ProudYorky
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Why not try calling your consultant’s secretary and asking for a telephone consultation. Quite a few of us are having our specialist consultations by telephone and I would say that you and your GP both need that expert advice.
And NO you are not being lazy. There are many and complex reasons why our family, friends, employers can’t or won’t take on board how awfull breathlessness can be. Why don’t you give your wife one of those thin straws and suggest that she attempts to do all of her activities whilst only breathing through it and with a peg on her nose.
Lol I've thought about a rope round her throat ....I've tried to explain she's been to consultations and I've googled things for her to read I have a phone consultation in oct in, June I had video consultation which is just a basic chat for the sake of it as I see it .....the worry is for us all is the situation isnt going to get any easier with the second wave coming thanks for your kind reply take care.
Meanwhhile,move yr goalposts - slow down to whatever pace is comfortable for YOU if yr exhausted,rest up,sleep.its easy2say but hard to relearn how to pace yourself.i wish u well and we r all here for ea other. Id be inclined to read some comments to yr wife -x
It is difficult.i do know how tough it is being exhausted all time,sleeping,feeling unrefreshed etc etc.stop trying so hard.u will learn to accept & work with the limitations lung disease places on us.its v hard,it takes time.perhaps u could sit & talk to yr wife.tell her how hard it is,that u need her to understand & work with u.i feel like yr on a treadmill,trying to keep up,but falling behind.ask gp for referral to pulmonary rehab - its educating,teaches u coping strategies plus exercise,and a chance to ask questions & get advice - with others who will have lung disease,& skilled lung physios.meanwhile,pace yrself,do a bit,sleep a bit.slowwww down xxxx
I finished a rehab course just before the first lockdown in March I had difficulty slowing down on that too even though they kept drilling it into me the difficulty I had was it seemed more based around COPD sufferers as out of 20 of us I was the only one with ILD and to be honest they couldn't give me the answers I wanted...in my working life I was always on bonus working to the limit sometimes 7 days a week 12 hrs or more for 40 yrs then renovating my own homes in-between so it is difficult to slow down I don't feel in my head I'm 65 and I get frustrated not being able to carry out the simplest tasks .I hate being dependant on any one never have been it difficult I know I have to change my attitude . As for sitting down with my wife I've done that and yes she looks after me extreamly well couldn't wish for more but because it's not on the surface either she doesn't seem to grasp my illness or just doesn't want to and in denial of it
I also think I am not dealing very well with it myself and maybe in denial myself I hate the way I am I used to be the bloke everybody came to for help sorry gone on don't think being isolated since My arch has helped either for me and everyone else
Oh i feel 4 u.i know exactly how u feel,honestly.i used t be a nurse,nights in large nursing home,evenings,weekends.on the go 24/7, full of energy,life and soul.its incredibly hard.10yrs ago i went to gym,line dancing,walked mes with dog,did diy,gardening etc etc,all with constant deep lung infections etc.ts all changed.shame re pulm rehab,yes it is mainly copd.bout 8yrs ago,i went and was just me there,jumped on exercise boke,going hell4lleather,stopping to use tissue,coughing violently - physio told me bout moving goalposts,slowing down etcit really hit home.i stopped fighting my lungs & learnt,begrudgigly,but wisely, yes,i had to adapt.now got no choice.it is hard.theres no easy route.we cant change overnight.but,it can be done.1 step at a time.we r here,we understand+ support ea other.if u can slowly adapt u wll learn to manage how u r now.please ring blf helpline and look online at mindsmatter,theyre great.xxxxxx
Cheers thank you I appreciate what you say but I've never been one for asking for help and I could not see myself talking about the way feeling yes I can on here but this is kind of safe for me thanks
I know what you mean 10 yr ago I got down to 14 stone went to our local Gym swimming weights running machines sauna 5aside football great life
Felt good looked good out with mates every Friday
Now it's all gone apart from weight now 18 stone and called obeast by the consultants
Its hard to ask 4 help but perhaps u need to.one step at a time.maybe helpline on blf is 1st step - thats what there for.nothing will change otherwise.asking for help/advice isnt being weak or giving in.its a brave ptoactive step to take in learning how 2 deal with yr disease. Hope u have beta weather thn the penniines - blowin a gale and teeming down!! X
Hi Kakariki, you are not lazy and scarring on the lungs causes breathlessness without a doubt. When you do have an appointment that actually goes ahead, I do hope your wife will be going with you.
I go to every appointment with Pete and have been there for x-rays, scans, blood tests etc. He’s tired most of the time and breathless too with COPD, sarcoidosis, heart and back problems. I’d never call him lazy.
Sorry if I sound a little cross........I am.
Wishing you well and do phone the consultants secretary and explain how you feel. Xxxxx
Thank you yes on top of this I've arthritis in my hands back and knees ones a replacement all through the building trade .I must admit she does come to the consultations but she is strong willed and to be honest a lacking in compassion she just has an attitude you have to get on with things and push yourself no matter what and she doesn't like weakness
One thing I've got from all this is everyone is exausted too . Nice to see your Pete is well looked after take care both of you xx❤️
You take care too and being chronically ill isn’t a sign of weakness. People like yourself are actually incredibly strong considering what they have to deal with. Thinking of you. Xxxx💖
Thank you I've got a phone appointment on 25 oct my wife has been there when the Consultant was explaing my condition but still says it's an excuse to be lazy, it hurts ...take care thank you
“Heavy scarring in your lungs,” that says it all. Of course you are exhausted. Is your wife joking? Did she go with you when you were given your diagnosis of ILD? And has she read your clinic letters? Hmmm... I think you should be honest with her and tell her how her comments are hurting you. Maybe she is being an ostrich and is frightened of the truth and is persuading herself that you are better than you say. Are there any other members of your family that might see things differently?
Yes she went to the consultations don't know what it is she's never had a days illness and says I've to push myself more and stop lying down I overheard her on the phone to her sister saying he's fast asleep again on the settee as useual it's hard for me I've spoken to her but it doesn't sink in my sisters are in there 70s with ill health and my Son who's 40 has type 1 diabetes and is miles away haven't seen my male friends since lockdown but wouldn't tell them anyway ....thanks for your concern Kate I'm just going to have to man up and bare it ❤️xx
At pres,we can meet up with social distancing,for a walk with 1 other person - ring a mate,have a slow stroll, and chat.it wll do YOU good.yr wifes attitude towards you is awful. We all need support,i feel 4u.perhaps on phone appointment,let wife join in,on loudspeaker - dont forwarn her but during call,explain yr struggling,tired etc.thn that yr wife sez yr lazy.im sure consultant will tell her straight x
You are most definitely NOT lazy. Your experience is pretty much the same as my husband's. Mine has scarring of the lungs after sarcoidosis 30 years ago and pneumonia several years ago. He has coped well until 12 months ago when he got a persistent cough. He was referred to an ild clinic and was supposed to be having various tests but then Covid happened and all his diagnostic tests were cancelled. Since then he has deteriorated rapidly and in July I took him to A&E because he couldn't breathe properly. After an x-ray and a CT scan they said he has Lung fibrosis. But still no lung function test. After constant badgering and return trips(3) to A& E where they have now agreed he needs oxygen at home, he will be having a lung function test on 8/10 followed by hopefully an assessment for oxygen provision. He has yet to see a consultant and has explained his problems in 2 telephone consults with 2 different doctors from respiratory departments. He is desperate now so my heart goes out to you. In my experience, especially at the moment you have to fight and badger for what you need. You have worked hard for many years as has my husband and you deserve better.
Many thanks for your reply The difficulty with shortness of breath concerns me but it's just the sheer exhaustion that bothers me most and know one around me seems to understand at times I feel I'm battling on my own ,it's good to see your giving your husband the support he needs hope things pick up for him give him my best wishes take 😁
Thanks kakariki. My husband is exhausted too but it stands to reason that you will be. You use up loads of energy when you are struggling to breathe properly. He drops off watching TV and never has a decent night's sleep. He also moans in his sleep like he is in pain but doesn't know it. He's only started doing that since his breathing got difficult. I am hoping that his lung function test gives us a clearer Idea of the extent of the problem and that if he needs oxygen at home that it happens asap because, well I don't want to think about what may happen. Thanks for your best wishes and I hope you get the appointments you need. Please keep badgering because you are right about so many people with chronic conditions are falling by the wayside because of the preoccupation with Covid19. Our best wishes to you.
It is so difficult when one is really healthy and one not . I have my own conditions to work with and fully care for my husband , I motivate him to gently walk to the kitchen and back , to help his circulation and lungs . Otherwise he does crafts sitting in his chair , usually with our cat beside him , he also plays patience on his I pad or Mahong . He has a support group that he speaks to each week on zoom . So though his lungs are deteriorating , he gets very breathless , and misses his day at the hospice , he keeps active in a different way . We don’t go out unless I do the short walk to the post box , and he takes the car for a run to keep it going , which also gives him a break , and doesn’t affect his breathing .
I have a full kit that I do his stats each week or more often , depending how he is , we have a digital peak flow , so we can gauge his lung capacity .
He is due his hospital appt in November , having had phone appts with his consultant , he does need Xrays or scan , so I understand the need for that .
Your wife may feel resentment , that a life she hoped to have with you has been taken away , she may not understand the conditions .
A call button necklace is really helpful , so she could pop out to do things and then know you have support there if needed . That actually frees both of you .
Thanks yes your probably right may be a touch of resentment that the bloke she married who basically maintained the house and garden plus sorted everything out financially bills ect is now struggling to put his socks on plus since this hit me my confidence and self esteem has hit rock bottom ...thank you for your kind words take care ❤️
Please don't push yourself through things. That's what my previous husband did when he had severe COPD. It caused him to develop heart failure, which he died of in 2003.
I have COPD, asthma and bronchiectasis. As far as I know, all are 'moderate' but I still have what I call 'Do Nothing' days when I just have to rest. Other days I can do quite a bit. For example, last week we had a walk around Sheffield Park Gardens. It took us about an hour and was uphill as well as down. I haven't been able to do that for the past couple of years, but suddenly I felt I could give it a go and managed it well . However, this week I am very breathless again and relying on my Ventolin. I really don't feel up to doing much so am on the computer a lot, reading and dozing!
My husband has learned a lot from coming to all my medical appointments with me. He accepts that if I'm having a 'Do Nothing' day we might have a take away dinner, or a Wiltshire Farm Foods dinner from the freezer. He doesn't complain but takes pleasure in seeing me achieving things when I feel able.
I would say that he hasn't always been so understanding. Like your wife, he was always very fit and active and rarely saw a doctor. One day he said to my GP, 'My wife always seems to be tired. She's always nodding off to sleep on the sofa.' My GP answered, 'Well, with all the medication she's taking, I'm not surprised at all. It's a side effect of a couple of her tablets.' My husband then said, 'Well, does she HAVE to take all that medication. Is it really necessary?' The look on the GPs face said more than I ever could have. He told my husband in no uncertain terms that I need everything I am prescribed. Since then, my husband 'gets it'. Also, he had a chest infection himself and was prescribed an inhaler for it. He made quite a fuss about it all and afterwards said he was amazed at how much difference the inhaler made. His attitude now is wonderful and I couldn't ask for him to be more helpful and understanding. Sometimes, people need to experience something for themselves to fully understand what we're going through. I like the idea of giving your wife a straw to breath through! That should do the trick. Lol!
Regarding your medical care, I am under the care of two consultants for different conditions. I have discovered that I can email the one and the other has a very efficient secretary who is happy to take messages on the phone and pass them on with a promise to get back to me (which she does!). I believe that both consultants are currently 'fire fighting'. I contacted the respiratory consultant's secretary by phone and shortly afterwards I got my CT scan appointment through which is to be followed up with a consultation. Likewise, I emailed the other consultant to let her know that I was still waiting for my heart rhythm test and I got an appointment sent through to me which was for two weeks later. Unfortunately, this fell on the same date and time (withing 15 mins) as my CT scan. They are in two different hospitals so I had to change the cardiology test, but my point really is that you may need to be proactive to get the care you need.
Don't worry about being 'lazy' - it comes with the territory!
Give your wife that straw!!!
Get on the phone or email your consultant if you need their attention. There's nothing lost by doing this and you may suddenly find you are at the top of their list. Let them know how the cancellation of your test and that you've not yet received an appointment for a scan. The consultants don't necessarily know these things so if you bring them to their attention they can sometimes get things moving.
Really sorry to hear all this for both of you , my heart goes out to you with your struggles to breath and tiredness , even eating can make you tired, but you are definitely not lazy. It’s good your wife has attended your Physical appointments as well as telephone ones and virtual ones , but clearly does not take it on board , she needs to research this illness to get some understanding of where you are now and also what potentially lies ahead , as this affects both of you. It’s good she is strong , but she needs to use this strength in a positive and helpful way for both of you like chasing up appointments On your behalf if it’s a difficult day for you because I agree with a previous comment that she is in self denial. I do hope she gets it sooner rather than later !!! Good luck with all this and hope you stay stable, Take care & Warmest wishes.
Many thanks for your very kind words it is very difficult yes she's is very strong willed in some ways it's a good thing but compassion and empathy have never been her best points lol
think many of us will empathise with you Kakariki. I had a double heart bypass four years ago and my recovery from this has been compromised by hardening of lung pleura and constant colon pain. My wife who has had to take over the running of the household , like yours, is a very strong resilient person. However she has had severe spinal arthritis for over twenty years. She is very critical of my lack of progress which she puts down to poor will power. I sometimes think if people could experience how we feel for a day they would feel more sympathy but then think I wouldn’t wish this on anyone, especially someone I love dearly.! Stick at it and follow all the great advice people on have given you.
Thanks Phil sounds horrible but it's a comfort to know I'm not on my own yes it's difficult for us and hurts at times when others don't understand how hard it is I just try my best there's no miricle for us out there
You take care sometimes it's good to be able to release frustrations on here ,there are so many lovley people on here
Great post. I think a lot of us know what you are going through. It takes so much energy just to breath and do the smallest of jobs. Each day is different depending how you feel. Think the lack of sleep 💤 at night does not help. You are not lazy. Just been telling my husband about the post. He said I don’t think your lazy you just need to structure your day.🥴
Foot note. . . . Going to give my husband the straw and nose peg later. See how he gets on. . . . That did make me laugh 😂 but that is exactly what it is like ⏱
Thank you it's a difficult thing to cope with especially when have always been active the exaustion is hard for me to cope with I feel so tired even after a nap on a morning I feel as if I've had no sleep at all even though I have slept through the night .Also at 64 I don't feel lm that old had a lot of plans that are impossible now . Just laughing with thoughts of your hubby with straw and the added peg on nose lol
My husband is fit and active 55 year old although he is classed as high risk because of medication.I am 60 next year COPD/ ASTHMA is hard when you have health problems and you cannot do what you could do before. You are not alone. And yes it is so hurtful when partners are not supportive. Work and life is scary with COVID and the second wave. I have worked all my life but I think it is time to stop and be kind to myself for a change. I stress about everything not good for my health. Perhaps you should try the peg and straw if nothing else it would be funny. Take care keep safe🧴🧻🧼⏱
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