Thank you for supporting me my life I feel is over this disease will win no matter what I do I can't carry on like this knowing I will get worse...coming to terms with the fact I can't change the outcome...
Thank you again for your support
Thank you for supporting me my life I feel is over this disease will win no matter what I do I can't carry on like this knowing I will get worse...coming to terms with the fact I can't change the outcome...
Thank you again for your support
Oh Emily my love stop being so dramatic! Wake up and smell the coffee. No one lives forever and we all collect something nasty if we live long enough. Why ruin or cut short your life when you are still fit and active? Time to think about this if and when it does get to the point where you are poorly to want to go on. You have to accept life as it is and not as you want it to be, there are no guarantees as you pays your money and takes your chances. You have a lot of good living to do yet. Don't give in.
The future will take care of itself so do what we all do - carry on and enjoy life whilst we can. We are a long time dead after all. Hugs Bev xx
I love your honesty my antidepressants not helping nothing is helping I am scared of getting worse not being dramatic honest I am petrified
Well I have tried everything else with you my friend so maybe it's time for a reality check? If your ad's aren't helping get yourself back to the doctors. I had to try 2 others before I found one that helps me.
I can't remember if you are doing any counselling? If not then get some. Try everything first before even thinking about giving in. You owe it to yourself and also to your family who love you. More hugs Bev xx
Counsel ling started I just wake up and it hits me then back to panicking I can't carry on like this
I keep reading how bad it gets and I can't handle that....my life has changed dramatically in my head and also presently....went for a walk yesterday and struggled worse than every...all I hear is give up before it gets worse
I am scared
Hopefully counselling will start to help you but remember it does take time. Just take each day as it comes and look at mindfulness as it helps to keep you in the present. I have been through therapy myself and of course it is painful as you are dealing with emotions you have locked away for very good reasons. But you need to deal with them in order to heal.
Don't forget too there are relevant 'worsts'. You have been reading too many stories of others struggles with copd, severe people. They are severe - you aren't and probably never will be. You are only seeing the very worst case scenario and not the one which is relevant to most mild copders. Like I said to you I am mild like you and have been for many years now. There is no reason why you should ever reach a stage where you are not able to still live a full and active life. You have to start believing what I and so many others have told you rather than catastrophising like this. x
Bev I read your response but feel I have so much going against me..first a fev1 at 79 is moderate . I don't know if that relates to my asthma or my emphysima...I don't know any mild/moderste with emphysima i could talk to...the crisis team said they will continue to work with me. I know I am not the only one who has been dealt this I know that ...I just can't cope with my prognosis
Do you want to swap? My lung function is in the mid 70's (might be a bit worse now as I am smoking again), I have a borderline underactive thyroid which makes me very tired, crippling back pain so I now need a stick, and of course my old friend depression.
I could go 2 ways. First I could just sit indoors, give in and rot myself to an early grave. Or I could try and make the best of what I have and enjoy my life as much as possible. I choose the latter. What do you choose? x
Bev I have an etopic heart beat, cervical spondolitis so in constant pain hiatus hernia acid reflux constant nose block mental health low bp...and have over the months tried to accept my lot...so you saying you are moderate not mikd now...
Hi Emily guess you have multi health problems. The cervical spondylitis is a sign of maybe difficulties of bone synthesis with the neck joints becoming stiff and bony spurs appearing. As there are specialists who are doctors who take a holistic approach in the US you can find a lot of information from Dr Mercola website on the subject of the intricate balance of vitamin d and vitamin k which affects bone metabolism. Many people are vitamin d and k deficient and this can lead to bone diseases including osteoarthritis where the bone becomes fragile. Calcium is leached from the bones to maintain the balance in the blood and the calcium is dependent on the vitamin d and k balance preventing bony spurs. Head and neck exercises may be helpful . Breathing and posture should be checked as this will influence your lungs and heart.
As you have a stuffy nose this might be due to dairy and egg intolerance. You could try going lacto free with cow's milk or cutting down on cheese and yoghurt. Sleep apnea can cause sudden wakening and night terrors as your airways are blocked and give you a panic attack . Have been helped by triprolidine pseudoephedrine and dextromethorphan multi action cough medicine which helps the lungs as well as the sinuses. May be this might help you in small doses. Guess it's back to the drawing board with your physical health which is impacting you with crisis depression. Hope you can access the recent drug available Roflumilast and Stiolto Respimat both available in US FDA for COPD. You need a multi approach to this world of pain.
No not back to drawing board my cervical spondolitis I have physio input and have tens pads for the pain. Not sleep apnea apparently..don't do dairy as upsets my reflux. And yes vitd3 taking...thank you so much
You need to eat more if you have low BP.
You may need some B complex Vitamins, but get blood tests for B12 & B9 (Folate) first. Also ask about Antibodies blood tests.
Who is monitoring your Blood Pressure ?
Are you on Blood Pressure tablets?
Please stop smoking you copd will just get worse...you have coached me from beginning of my journey January when I then had to wait till may to get an outcome...do what you told me please
What prognosis - you haven't been given a prognosis. The future is bright as you gave up smoking ( back in December). It can be as good as you make it . You can improve with starting to eat and getting into a good normal, healthy, routine.
You have been told you may have MILD Emphysema. Possibly mild diagnosis ? ? No prognosis ?
You are blowing this up out of all proportion.
Emily you need help now - where you are - so please call 111 or your doctor. Or 999 if needed.
Please talk with your family.
And stay off the British Lung Foundation forum. I couldn't find any post or replies from you on there or anything to cause this state of panic.
You need support where you are , in person and now. X
Call your doctor.
Your antidepressants could very well be the problem. Read the leaflet - some have the side effect of suicidal thoughts.
Call your children.
Call the Samaritans.
Call a Minister in a nearby Church.
Morning dear hypercat54 and I thought you answered Emily 's post extremely well. Life is what an individual makes it and one thing we know is,we don't live forever so make the best of the rest!
Morning yourself my friend. Thanks for your kind comments. Yes it is all about mindset isn't it? If you insist on just seeing the negative then it will crowd out any positivity won't it.
But every cloud etc. All we can as fallible and frail human beings is to make the best of things and to cultivate a more positive mindset. x
Stop reading. It's not doing you any good to read all this negative stuff.
hypercat is right, you have to move on.
My husband was given a " death sentence" and guess what? That was 22 years ago.
Not lung related so I won't get into on your post.
A lot of people live with chronic illness. Yes, at some point a chronic illness becomes terminal. But, that doesn't mean it's tomorrow. If you want to look at it that way aren't we all terminally ill? We are all going to die. Some of us will struggle some will pass peacefully. Some will need assist from their adult children some won't.
I've lost so many people over the span of the last 8 years. We have genetic kidney disease in my family. Those that tested positive could and did face dialysis. No one stopped their world. They kept living.
You need to sit with your therapist and your nurse and pulmonologist.
And I definitely agree it may be time to change your meds around.
I have tried to change my mind set..Bev gives me hope then my world caves I am struggling I want to fight I can't...I cant
I can't stop reading it it's how I will end up so. But thank you
As you can see no one wants you to give up.
You have a great support system to lean on.
I know but I am struggling I do things then the voice says you won't be able to do thst later on...I tried yesterday walked excercised ate drank well then the voice ...why are you wasting your time.
I know how it ends no matter what I do....
My journey started in Dec when I was admitted to hospital 1st December last year unable to breath properly...they query copd...then Jan told had copd and asthma...then feb consultant said did not think I had copd just asthma...more test in May confirmed suggestion of mild emphasiuma and asthma based blood gases.
Heard very little after that...I was then told by a nurse if I do every thing advised I should get no worse...I paid for nutritionalist to help with my diet...not smoked since admission and was exercising like mad. No I truely understand no matter what I do I will get worse and that scares me still struggle. I can't end up like the people I saw in hospital a couple of weeks ago..struggling to walk and breath I can't
I have a beautiful family and I don't want them to see me deteriorate
I know it's a cowards way out but I am not like the great people on the lung forum I am scared beyond belief....I can't afford not to work but may have no job...and this is all my fault
Mayb you should ask your medical team to see if they can have you meet someone that has done well.
Perhaps you need to see someone that can give you a look at a different outcome.
Then maybe your mind can settle somewhere in the middle.
I asked about that as I thought that would help...not happened I just see no real hope ...I am scared of the thoughts that go on in my head...I just have the image of people in hospital I can't have my family see me like that I can't I am so grateful for the people on here
I would keep asking. There has to be someone with the diagnosis that would being willing to have a chat with you.
You have been through a lot and rather quickly. Therapy is so important. I hope you will be going often. They need to hear your struggles and get your meds adjusted.
The people on here are great in support.
I am not the only one who feels that way communicating with some one who feels exactly as I do
My life is over I am only 57 I have been like this since January and I hope beyond hope I could deal with this I can't
I'm not sure what your first line means.
All I can do is wish you the best. I hope you have some good days or even hours in between.
I've dealt with anxiety and negative thought for a long time. I've done a lot of therapy and finally have a better handle on it. Therapy and meds has worked for me.
I hope you find something to help you make it through each day as it comes.
A lady in the same boat as me feels exactly as I do about having this diagnosis...in fact there are 3 ....we are trying to support each other
Anyway thank you again
Good I'm glad you have support.
Emily61 I hope you are trying to be positive for yourself and your two other ladies. If you continually have your mind set on "everything is going to get so,so much worse so quickly" , then it will make it very hard for the 2 ladies to try and be positive and love life to the full:- to live and enjoy even though we are talking about a chronic lung illness,so many 1,000's live long lives and die of something totally unrelated.
We all feel the same. I have never said quickly nor do I feel I will wake up tomorrow unable to breath...I am part time carer for dad and can't do that effectively.
I have given a listening ear to their fears non judging just listening. As they have to mine.
You are 100% right because sharing all and any of your fears or worries,is the only way to work out some of the basic stuff that has been proved to be so useful. Talking to each other means you can pick them up on their down times and they too will be there for you.
Please, please try and accept you have many many years to live and enjoy ....... Just like the other ladies.x
We are all frightened our breathing isn't under control we are trying to make sense and admit there are times like me today that we want to give up run away...for all the same reasons
Ok,I get it and I've been diagnosed over 9-10years now and my breathing varies from struggling,not so struggling mild,good-ish but its never been better than good-ish because that's the nature of COPD .... It effects some peoples breathing far more than others. Sort of lucky dip,lol! If after my meds and puffers and a calm head I'm very breathless then that's how it is but it may get better. Each of us are unique and its frustrating when another may have a hacking cough,severe breathlessness yet they are still able to move around,ok slowly but they look after themselves and have independence. You need to be logical and once you understand your illness,that's when you gain a certain of control. X
I accept my breathing will never be great wasn't great with just asthma ...it does get scary and I had a day where my breathing did not bother me and when it bothers me I freak out....what stage was you diagnosed and what stsge are you now please
I do understand what emphysima is/Does over time...I have had asthma for over tens years so understand that component completely..
I think it's coming to terms and accepting I can't do...and no amount of this is how it is makes no difference to how I feel
I can just about cope now and then I think .....no to the rest of it ....I don't actually know how severe my emphysima is as not had a ct scan...just single breath defusion...I know people day knowledge is power...but there is so many conflicting views out there
And what is slow progression...some stay stable for many years some decline quickly despite doing everything
I don't understand how you get it 20 years after smoking....that to me rules out the quit smoking slows it down???
And we non want to be incapable of looking after ourselves these are not irrational fears
No they're not but you have skipped over all your life in between getting so unwell,you will need to rely on others. To be quite blunt,statistically 2% of COPDers will die only because of not being able to breathe. Basically,the other 98% vary from previous existing conditions, cancers, RTA's,surgery, unrelated heart problems and more .....etc. So as you've been rightly told ,the vast majority die coz of other reasons. You can't live your life and enjoy it , if you are thinking you will one day die because you were breathless.
The key things for me can not speak for others is
Losing my independence and breathing
Second is death we all have to die of something death is the end product of birth.
I do not want to lose my independence and gasping to breath in and out of hospital...I have a friend who think diagnosed 8 years ago is 52%( and I think these figures are actually irrelevant ) was 82% Jan dipped 52% June still works lives alone cough a lot. Rides his motor bike.... absolutely no change in his life ...get a little breathless that's it ...and the conditions you mention for death are risk factors of copd, so it can be argued that indirectly death is related to copd
Emily61 dont think I'm being rude,but have a friend over so we will continue our conversations tomorrow morning if you are free and want to?
Have a good night yourself!
Emily61 I would like to point you in the direction of posts from our member called @Shazrab from yesterday as they may really be of help!
Have a read eh? She is under The British Lung Foundation,so if you're not a member you can't add any comments but just reading her first post and then her replies will hit a note with you! You can join the BLF as COPD is lung related disease and you'll get lots of support there. 💞
Why are you saying 'sorry" ... You have nothing to apologise for,absolutely nothing.
I do I read hers yesterday she is a fighter and I am throwing in the towel because I am scared. So yes I am sorry....I would love to stay at this stage like others have said they have for 14 years but scared to believe that is possible...yes I am scared
I can totally understand your worries and concerns,but if u can't bring yourself to accept what others are saying,then you are surely going to worry yourself something stupid.
Its time to have faith, not the religious type,but faith in what so many other COPD'ers are telling you!
I have read so many conflicting views some say it can be kept stable 21 years some progress fast...some very little...I just so scared it all confuses me.. I get breathless not all day but parts of the day.....and I panic when it happens....and I read hear about how people die horrific deaths due to my disease...that adds to my fear....Moderate mild what am I without a ct scan.
And religious faith is what I need to turn back to.
Can I ask what was you diagnosed and what are you now? And do you have emphysema
I have end stage or 4,which is the very severe stage of COPD. Only 21% of my lungs work and I have trapped air in my "long lungs". I've been diagnosed over 8/9 yrs,I can't really remember exactly,but for last 4 years been stable on 21%. I still drive my car,manage to shower and do some other things but it takes me far longer. I have bad mobility and without mybstroller i cant walknkore than say 10 paces. I have pills and puffers and take them religiously. I use oxygen too. I'm happy and very grateful to be here right now and dont intend on going anywhere soon as I'm only 57yrs old!
Thank you so very much for your honesty we are the same age so was you diagnosed mikd then worked up to severe....I am glad to hear you maintain independence...
my husband is one that stayed mild and still is 21 years later Emily how can you not find that encouraging?
I do find great encouragement from that but...am and small but I am moderate with symptoms not major but symptoms and have asthma on top...but some one i know who is mild I hope she reads this and know I trust what you are saying to be true xxxx
Your post has given hope I hope to a lady I have been messaging...
Emily - keep away from negative people.
Do you still have the option to get Mental Health support ?
Are you considering it?
They seeing me Monday I cancelled appointment with them as I didn't want to see them
Will you agree to going into the MH facility?
No they are community based care
What happened to the being admitted then - as your daughter is no longer looking after you.
Something to consider.
I don't know I spoke to consultant over the phone yesterday. They will just check if at risk...I can phone if I feel at risk
I think I have This disease to come to terms with and impact it has on my breathing
That's what they want me to do
And I can't
It's how we die...and struggling to breath and not being able to walk dress ect is what is bothering me not death. My expectations are I am not a burden to any one...dont want to end up in a home
You do not know how you are going to die or when.
Stop thinking like this.
Morning Hidden and I was rather sad to read your post today as I felt sure last week,you'd turned a corner and your head was in a better place. It seems as though you are constantly stuck,looking at the worst outcome,which as hypercat54 and Dolphin14 say, is all able to be kept under control .... Or else, all our members who tell you they've WAY exceeded their Doctors expectations, and they are telling you the truth....you are saying to them that in your opinion,you can't keep your COPD at a very slow progression,but they can and are!
I maybe sounding harsh but that's only because even with your antidepressants you say they don't work/help you .... We did advise you that they can take up to 3 weeks to get into "your system" and I'm hoping your doctor told you this also.
Please put some positive thoughts on your head like your children,your family events you enjoyed going to. All of these are still there for you,unless you are unable to use your legs then carry on as you used to before being told you have COPD. If your breathing had gotten so awful that to simply walk , took every inch of strength you had and then only a few wobbly steps,then that would be so much more worrying. But this is not you,so live for today and tomorrow,and the next day,please!💞
My work I don't know if I have a job as started March and have had 3 periods of sick ...waiting to find out...my chest infection yet again getting me down...my diagnosis scares me I can't help how I feel...I tried I was given false hope I was so determined I would stay at this stage..I feel guilty as I caused this no one else
What stage ?
Asthma? Possible Mild Emphysema?
I think I would be asking for a second opinion.
Ask for a referal to a different Respiratory Consultant. At a different hospital if possible.
Consultant said mild emphasiuma and asthma I am stage 2 I have had asthma for over 10 years
hi Emily wanted to ask you what will you do if you lose your job?
I don't have to worry about that anymore
Have you lost your job?
I lost mine through ill health. Was younger than you.
Don't know yet
So why do you say you don't have to worry about that anymore.
Because I gave up I can't make them. Keep me on
You mean that you resigned ?
Then you do know - you left.
oh hell Emily im blind but I still have to eat-LOL
Hi Emily. You are a beautiful soul! Don’t you dare making the darkness prevail.
Find positive anchors. Look at yourself in the mirror and tell your anxiety and depression to f* off. And then say to yourself that every single day is a good day, no matter how positive or negative it is, because it always gives you an opportunity to start creating something positive in your life.
Thank you don't know about the f.....off part🤗
But thank you
Sorry Emily just read your health resumed and did not know you had irritable bowel syndrome. I can understand the combination of your lung breathing stomach and intestines. IBS on its own is bad enough. I hope you won't mind me asking if you have had tests for celiac disease as IBS sufferers are not aware they may have food intolerances which can make their symptoms so much worse. Fatigue and depression with IBS is common as are other autoimmune diseases such as diabetes and thyroid. a
As you are having tests for low blood pressure this can be due to anaemia with low iron ferritin and low vitamin d in connection with thyroid or with low iron and B12. With IBS the guts can make iron and vitamins difficult to absorb. If you ask your doctor for food intolerance tests colon ones being egg dairy and gluten and for your vitamin and mineral levels including B12 D and ferritin this may help your IBS by changing your diet. Your blood sugar levels should be tested as well as thyroid hormones. I know these tests may help you understand your COPD as heart beat ,thyroid , can be affected by celiac disease. it took fifty years to find out about my IBS and within days by removing all food intolerances I got my life back and was able to control diabetes type 2. Am sure you will find there is a reason behind your COPD and IBS. As you not be able to eat acid foods such as vinegar lemon and grapefruit finding out about foods is one step towards health. Supposing you have dairy egg and multigrain intolerances and you start your day with toast butter and marmalade and tea with milk and eat cheese and mayonnaise. Every food on this list may make your intestines react. I don't eat bread rye barley malt egg mayonnaise beer marmite as they have malt in them through barley. No need to reply.