Diagnosed COPD. New to forum.

[Sonsafc]

This week I have been diagnosed, what level yet I'm not aware of. Two inhalers, sabutamol and a powder one. As an ex care worker, I'm aware of the end stages only. My feelings and emotions are all over. I'm a very realistic person, not sure if this is a hindrance to myself or not. I'm 54yrs old, with a lifetime to live, or so I thought. My main concerns are loved ones not understanding this longterm illness, my quality of life, and what support there Is out there for myself and loved ones. I've never joined a forum of any kind before, but feel I need to have people to express myself too, other than family and friends. I do not feel that it would be right to speak to my loved ones about my fears, etc. Is this normal.

[2greys]

Hi Sonsafc, welcome.

What you are describing is perfectly normal. That is what we are all here for, you are not alone. I found that the only people who understand what it's like to have this condition are other sufferers. Fire away, ask questions, sound off your fears and frustrations someone is always around, we are here for each other.

[Sonsafc in reply to 2greys]

Thank you 2greys. I hoped that would be the case.

[diesel12]

Anything you feel is "normal". I would guess that we have all felt the complete range of emotions when we are diagnosed with the exception of happy lol!

I was diagnosed last February with moderate copd and thought my future was over, but it's not.

I'm 60 so have to remind myself to factor in the age thing but I still work full time, go to gig and dance like a loony. We all have a future, a good future it might just be different to what we thought it would be. I'm hoping to move abroad when I retire, so nothing is impossible

As to friends, family and colleagues, well they will all react differently.

My daughter gets it and is great to talk to, my husband can't deal with it at all so won't talk about it and changes the subject if I try. My colleagues at work are different again, they know about it and understand that I have limitations until it impact on them and then they can either get frustrated or don't know how to help. I also have friends some of who get it but mostly they forget about it because I try not to impact on others so, I would suggest you talk to them and gauge their response and maybe just have a couple of "confidants" that you can open up to because it never did anyone any good to bottle up their feelings!

This is also a great place to open up, we're all in the same boat and you can bet someone will have been through what you're feeling so make yourself at home and welcome.

Shelagh x

[Sonsafc in reply to diesel12]

Thank you. I just feel a little overwhelmed at all the information I have read about the diease.

[Fionafish in reply to diesel12]

So glad to hear you dance like a loony

[diesel12 in reply to Fionafish]

ha ha ha!

[Tracytrackerb]

I felt exactly tge same way was i got my diagnosis..i think its a normal reaction..but i will say please talk to someone on how your feeling..i boxed my thoughts and feeling up never shared my concerns or how i felt..not good as i ended up in a dark deep hole felling crap..but theres always light at the end of the tunnel. Still suffering but i deal with it in a more poositive manner ..take care. Breath easy ❤

[Pam1952]

Hello and welcome. What you're feeling is perfectly natural and I know that joining this forum changed my attitude totally. It's a great group of people, and you'll get as much support and advice as you may need.

Looking forward to hearing more from you soon. Take care. Pam XXX

[sassy59]

Welcome to you. This is a very caring and supportive site and you can phone the BLF helpline during working hours on 03000 030 555. They can talk to you about your diagnosis.

When you feel ready please speak to your family about your COPD as they need to understand what it all means to you.

Please chat some more and take care xxxx

[Katinka46]

Welcome to this brilliant forum. It is very supportive and most here have gone through what you are experiencing. Generally I feel that telling the truth to family and friends is a good idea. But I am a great blurter. And I am massively blessed with a very supportive network of family and friends. People are different (sorry, cliche but true,) And you might be surprised how supportive folk can be. And if someone in your close family circle was ill wouldn't you want to know? But you know them best and can gauge how they can take.

Look after yourself and give it time to take in

K

[Sonsafc in reply to Katinka46]

Thx

[Damon1864 Volunteer]

Hello and welcome, yes it's perfectly normal to feel the way you do we have all been through it. Don't worry about the different stages we are all different. Just exercise,eat healthy and try to stay positive. Live your life normal and to the full it works wonders. We are all here anytime to chat to. Keep posting take care 😊 Bernadette xx

[Valerie01]

Hi im in stage 2 and i dont understand it c.o.p.d that is i dont have any information about it i Google it so only know it has 4 stages and its hard to breath but yes i dont want my family and friends thinking im moaning anyway i cannot explain to them about it as i dont really understand it im 57 and hope i have a long time left so i like this site even if it is to tell people i dont feal good lol sorry for going on lol hope you are ok and you can message me if you want x

[Hidden]

I have had copd for a few years now and most of my family know i have it .

Life is still good just means you will find you have to slow down when doing things

And there is lots of help out there to help you ask your doctor for a group by you but you will get a lot of hear as there is a lot on hear that have got it .

But most of it has to come from you as it is only you that can control it like if you smoke stop if you can eat healthy food ect

As with the med you will put on wight

Which will be no good as when you bent over you will find it hard to do so

So take care

[Mandy6513]

You need to get yourself on a pulmonary rehabilitation group ask your doctor to refer you ....they will tell you everything you need to know about how to take care of yourself and what support is available

But !!

You dont know what stage your at and because of your job your thinking the worse...,, with the right meds and a good diet and some life changes you could actually increase your lung function a little and actually have a good life as many members on here will tell you

[Sonsafc]

Thank you everyone for your kind words. I fully appreciate them. I realise I'm probably thinking the worst at the moment, shock I think. I have great friends and family support around me usually. Its great though that I can come here to speak to people when I don't feel I can speak to them. Im sure I will get plenty of advice and guidance from friends to be on this site.

[Fionafish]

Hello Sonsafc, I was the same age as you when I was diagnosed five years ago and was very shocked - I thought it was a death sentence. I am on the same medication as you too and that hasn't changed unless I get an infection. The best thing I did was to gradual increase exercising and now I do 45 minutes every day at the gym and often more with walking. I feel fitter but do get puffed out more now so I know my lungs are very gradually getting worse. The exercise has really helped me feel more in control but every day the COPD is there - it just is easier to cope with now and I plan to do some 15 mile hikes in the summer. Also eating healthy food and getting flu jabs are very important. My immediate family do know but I have found this site invaluable even just reading posts from people who understand how I am feeling. Good luck

[Sonsafc]

Thank you Fiona, for sharing your information. I do walk every day if I can. I also suffer from widespread arthritis, of which I have in my feet. So sometimes I can't exercise. The longest I can walk is generally 30mins. Its good to hear that after 5yrs, you feel so well. What stage are you at if you are on the same meds as myself. I have an appointment with our gp surgery this Wednesday to see the COPD nurse. I dare say she will be inundating me with info. I hope I take it all in.

[Fionafish in reply to Sonsafc]

You are very welcome. I am not sure what stage I am at as I have not been referred to a consultant (hopefully mild to moderate). I have emphysema and bronchiecstasis (diagnosed from CT scan) but was told that unless I have three bad exacerbations a year they will not refer me. After reading posts on here I realise that is not right and we should insist on seeing a consultant. My doctors are lovely and I can get appointments within an hour so I feel a bit guilty hassling and have been thinking of seeing a consultant privately. I have also got inflammatory arthritis and it is hard sometimes. I mostly control it with my diet and I have taken celadrin, which is really good. If your arthritis is osteo though that is not so easy. I might be a bit obsessed but if I can't exercise then I sit on the couch and do arm dancing till I feel puffed! I'm the same at the surgery - I don't take much in and think I should take a note pad and pen or even somebody else. Learning the breathing exercises are really important too (also on youtube). Sometimes I think this has been positive in that I do look after myself better now and life is so precious - good luck

[winnabago]

I have copd also, am 74, I believe I have had copd for the last 4 years, with the mild stage lasting quite a while. My Dr says it is now moderate, whatever that means. This group that you post to are very understanding and can help a lot. It might also help you to find a local support group that you can talk to in person. The best to you, and I hope you aren't smoking. John

[Fionafish]

I remembered another thing - I started getting sensitive teeth. My dentist said the inhalers decrease the amount of saliva so food particles are more likely to get stuck and cause decay. He recommended the use of sensitive pro-relief tooth paste and more regular brushing/mouth wash, and it does seem to have worked. Hope your appointment went okay

[j1066]

yes it no fun i tried to work for as long as possible . just take time an sound advice .