What to do now?: Severe COPD diagnosis... - British Lung Foun...

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What to do now?

patty-ann
patty-ann

Severe COPD diagnosis has me feeling hopeless

I paid for a consultation with a respritory specialist today and discovered that my COPD is now at severe level. I'm told it can be managed to give me a better quality of life but I'm feeling very down. I can barely walk without getting breathless now and yet only a few months ago I was able to manage to get out and about on my scooter to do some shopping. I'm doing all the things that I'm advised to do to control my breathing etc. and have been watching this forum for several weeks. How does a person cope with it all? I'm feeling hopeless.

I'm a 75 year old female,

38 Replies
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Patty all you can do is your best. I find the most important thing is to keep positive. All so. Iam afraid it really is if you don't use it you lose it. I think if you are like me then after this winter. Where a lot Weaker. Hopefully we. Will get stronger. It's a awful illness . Do you have support. You can come back from when your weak. You must eat well. And join breathing classes. Maybe this is not what you want to hear. Bless. You. Take care. Paul

patty-ann
patty-ann in reply to Tricity125

Thank you for replying so promptly Paul. I do have a very supportive partner and he helps me as much as he can but I know he worries when I can't breathe. I don't know what I'd do without him. There is very little help in my locality for COPD, I've been waiting for almost a year for a rehab course. Feelng positive is easier said than done.

Pantani
Pantani in reply to patty-ann

Is there a breathe easy group or a singing for breathing group near you? The singing will help your breathing and you'll find that meeting others in the same or similar situation helps. I find that it makes me feel better both physically and mentally.

Pinejen
Pinejen in reply to Pantani

ALSO CHI KUNG is great..look on the interent for simple chi kun exercises..

Failing that try CBD oil.. it is legal and there are folk getting good results and cutting down on Meds

patty-ann
patty-ann in reply to Pinejen

I had a quick look and think I might try some of this. Thank you.

Pinejen
Pinejen in reply to patty-ann

Hi, I use CBD brothers, white top,, there are other companies too, its individual but worth working on.

Check some of the facebook support groups...too.

Eat lots of fresh green veg, alkalise your body with lemon or Bicarb. stay away as much as possible from Caffeine, sugar and white bread.

Turmeric or Curcumin is anti-inflammatory too. There is heaps we can all be doing for ourselves too.

patty-ann
patty-ann in reply to Pantani

The nearest Breathe Easy group is 16 miles away. My partner and I sing in the car when he takes me for a drive but I can't find any organised sort of help here.

I think my depression is my problem, I just don't see the point of struggling on to extend the quantity when there's no quality to my life.

Damon1864
Damon1864Volunteer

Hi Patty, please stay positive it really does help. I know it's easy to say that, but I also know how you are feeling at the moment. Keep fighting, exercise and eat healthier. Make sure you have people who will support you. We on here will give you support also,so try not to worry. Keep posting to let us know how you are. 😊Xx Bernadette

patty-ann
patty-ann in reply to Damon1864

My partner is the only support I have at present. My offspring don't know the severity of my condition and they don't live close by.... I don't know how much to tell them.

Damon1864
Damon1864Volunteer in reply to Damon1864

Hello Pattyanne, tell them everything is the best way you will be surprised how very supportive they will be. Good luck. Take care. Xx Bernadette 😳

Hello patty-ann, I'm sorry to hear that you are struggling to cope with your illness. It's understandable and with time you will find your own way's of dealing with all the ups and downs we all live with on this forum. I have very severe Emphaseama and like you the easiest of tasks has me breathless. What I do when I am struggling to breath is talk to myself, I talk myself out of the panic before it gets worse. Now that might sound strange but it works for me. I simply say "calmly dose it, you'll be fine and so on. My husband says these things to me, so I'm mimicking him. And then it calms me down enough to do my breathing technique. patty, you will find your own way that works for you my friend. I'm in my 60's . Please keep Intouch with us, we are here for you. 🌹

patty-ann
patty-ann in reply to Stumpy55

I do manage to calm myself down, I have tablets from the doctor but I haven't taken any yet. They are my last resort if I feel I'm starting to panic. I usually use breathing techniques until I get control again.

Hello patty-ann, it is about the coping not easy when you are older. You have to just do what you are able don't think about what you cannot do think of the positives that you can do. Could you pay for someone to take you out or would that be an impossible task for you now.? As suggested singing and breatheasy groups can be very supportive but are not available in all areas. I used to be very confident at first but now I find it hard like yourself to be positive as ability reduces. Take each day as it comes and do your best is how I cope. Take care and live each day to your capacity not what others expect.

patty-ann
patty-ann in reply to katieoxo60

I'm doing my best all the time but it just doesn't seem good enough any more. My decline has come so quickly I'm not adjusted to it yet. Only a few weeks ago I was able to get out in the town on the scooter and now I'm barely able to walk to the garage to get it out.

katieoxo60
katieoxo60 in reply to patty-ann

Maybe this might be a temporary bad spell, but I would try for day care often they pick you up and you get to go out with help & supervision in case you are taken ill. Meet other people there too, maybe different conversations. You need some help to come to terms with the sudden deterrioration . Don't give up I am sure you will find a new way to cope with the next phase of your life. Best wishes

Dear Patty-ann,

How hard for you-do you like music? It can be very soothing and distracting-perhsps an audio with a calm voice showing you how to breath through the panic?

The thing to remember when you feel panicky is that fear will make you fear even more so try to relax as much as possible-hardest thing when you are scared i know.

Do you have any hobbies you can do when sitting? Like jigsaws on a board-come back to them as and when-decoupage-painting-to name a few, maybe ask someone to take you to an art class?

Finally-I used to work in a day Hospice with patients with all sorts of diseases and COPD - did you know that you can refer yourself or doctor can to a Sue Ryder day hospice? Find the phone number on google.

They provide once a week day care with a multi team of specialist nurses, physio, doctor, pyshcologist, art and crafts, etc and its all FREE! Also they can help with medications and referals.

You meet lots of nice people and they will support and care for all of you.

People wrongly think you go to a Hospice and stay there but its day care once a week.

Its good fun too as they orgaines the meals and games and activities and lots of things!

I worked there for a ling time and can recommend their services.

I dont know if theres one in your area- but please give it some thought it will help you tremendously.

We are all here for you,

Janzo x

patty-ann
patty-ann in reply to Janzo54

I had lots of hobbies, painting, knitting etc. I still knit and crochet for charity. I have a knitting machine and loads of yarns. Still have paints but got cataracts now so don't see well enough. I play games on the lap top, watch TV, would love to do a bit of gardening but can't. I'm doing exercises to try to strengthen my lungs several times a day. I eat healthy foods, and at present can still manage to beat my partner at scrabble but at the back of my mind I'm always thinking 'the end is nigh', 'your days are numbered' , 'why bother', 'all is lost'. How do I get past hese thoughts?

I sympathise with you, its so hard struggling to do the simplest things. I have Bronchiectasis, I am 84. Not felt well for weeks now, keep hoping tomorrow will be better. Sometimes it is for a little while. I pushed myself one day and then I cough up blood, which always scares me. So then I take it easy and do my knitting, read my book, watch some tv, do a crossword, all in between the jobs I have to do, just the bare necessities.

I remind myself of how bad I have felt in the past and then felt better, it must be hard for our husbands and friends to understand how different we can feel from one day to the next. Itsnot what you can't do, it's what you can do, and the weather is improving to help us. Love Iris x

patty-ann
patty-ann in reply to Lyd12

Thank you Iris, I know I'm letting the side down by feeling like this. There are so many of you being so brave I should feel ashamed of myself.

Lyd12
Lyd12 in reply to patty-ann

It's not bravery Patty, I think its resignation, "what can't be cured must be endured" as the saying goes, and it seems there is not a lot of help out there for us. There are always folk worse off, we all know that, but it's natural to feel fed up when we can't do what we used to be able to do. You will find a way to cope I am sure. Sharing our fears and worries on here is a good start.

Sorry you feel down. Get GP to put you in touch with RESP team, do as much as you can with gentle exercise , the singing and breath easy groups are a very good idea as suggested . More knowledge is a good thing .Look at the suggested BLF sites for ideas and reinvigoration. Never give up. Listen to the birds enjoy the sunshine.

Dan

patty-ann
patty-ann in reply to donut43

GP is a on starter! Getting to see a GP takes weeks. Never heard of a RESP team in this area. Yes, I listen to the birds (seagulls squarking) and enjoy the sunshine too, I live at the coast and on a good day used to be able to sit on my scooter watching the sea but I get breathless just trying to get to the garage to get on the scooter when my partner gets it out for me. I'm telling myself to pull myself together now after all the replies and support I'm getting from here.

donut43
donut43 in reply to patty-ann

GP is a starter. Do ask about RESP team anyway. You are doing well. Good luck Patty -Ann.

Dan

First make sure you don’t have a infection going on and do you use oxygen when you are moving around

patty-ann
patty-ann in reply to sunnyday22

I don't use oxygen, I was told I didn't need it. I'm currently medicating myself on doxycycline and 2 little tablets of steroid just to check any infection that might be lurking in my nasty looking sputom.

Hidden
Hidden

hi patty ann am sory you feel down butthen just think about it if you wake up in a morning you gota other day to look forwrad too like you i have Severe COPD and also severe eimscem if that how you spelt it but am on oxygen when out walking it help me get round and yes i can walk a lot more now i am in a rehab class and that also helpping but the other day someone said to me who know when your going to go can any say they know anyone can go at anytime so live to you means and have fun

patty-ann
patty-ann in reply to Hidden

Thank you, my partner tells me that he might just get there before me! It's not easy for him caring for me but he doesn't complain.

Patti ann hi my name Vron and I have had C O P D for 25years . and I know exactly how you must be feeling. Please don't despair you will soon learn to live with it try to keep smiling I know its hard but it does help if you can,

there are so many people who have this roton thing. and they will all love to help you, Stay on this site there are so many good people here all my love and prayers for you Vron

patty-ann
patty-ann in reply to vronny

I've had COPD for over ten years and been watching this site for about 4 years. Until very recently I was considered a mild case and I managed very well. I worked until I was 70 years old and only gave up 5 years ago. I don't understand why I've deteriorated so quickly, it a matter of weeks I've been going down hill, I thought it was just Winter effecting me but now Spring is here and I'm no better

Lilian226
Lilian226 in reply to patty-ann

You may still be recovering from a bad infection or pneumonia, I felt really ill and breathless for about 2 months after infection and then I started to feel better, now I feel quite good. I hope this is the same for you. Lilian xxxxx

I wish i knew

Thank you everyone for all your advice and support. I'll try out some of your ideas and hopefully find a light at the end of the tunnel. X

Janzo54
Janzo54 in reply to patty-ann

Take each day as it comes- theres brilliant practical advice on here too isnt there! Its natural to have low days-do you have someone you can talk to when things get you down?

Keep chatting to us!

Love Janzo x

patty-ann
patty-ann in reply to Janzo54

My partner is here to help but he doesn't understand the panic that comes with gasping for breath. He tends not to empathise and I think he thinks he's helping by getting angry because he doesn't know what to do to help.

Hidden
Hidden

Well at least count your blessings. I'm only 57 , female, and had a terminal lung cancer diagnosis. I have had an awful chemo session, and can hardly get from one room to another. I'm struggling on though as best I can. Life is really tough. Good luck.

patty-ann
patty-ann in reply to Hidden

I lost half a lung to cancer 15 years ago when I was 60 and I remember it took me a while to recover but you will get there, hang on in there.

I'm feeling much better at the moment, up and down like a yo-yo but trying hard to stay positive. Thank you for replying. Good Luck. X

Hi. Patty Ann It's only human to fill weak. And when like us you cannot breath. Right. Then you fill like we do. However we must except this and hang in there. With me I do my dam hardest to not let depression seap in because. It's very hard to shake of so do what ever it takes. Me I'll do any thing to prevent so I think all I can do. It is tough but. I know depression is if I allowed it would of been the end of me a long time ago. So please patty. You. Hold your head high. This is a test. But you can become a better person though this illness these online groups are great help. Try to start breath easy. Classes. It will get you out the house and meet others plus they teach understanding about. Coping with breathlessness Bless you my darling Paul. J. Hackney.

Thats hard not to feel supported-i do hope you find something that works for you soon. 💐x

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