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I am recently widowed after caring for my husband (we were 45 years married) for the past 5 years, who ultimately became quadriplegic. Life has been very difficult, with no help at all from any of the Authorities. I don't regret a moment of it and still miss him desperately. Life has been pretty rough, but then what happens? Something comes along and kicks you in the teeth. That something, in my case, is COPD. At the end of the day, I feel as if it's one of those self-inflicted illnesses (in my case, as a 30 a day smoker) and so I'm reluctant to tell anyone what my diagnosis is: it gives them less of a chance to say \". . . it's your own fault!\" So, I'm keeping it secret and am telling those who need to know, that I have developed asthma because of the recent stress in my life.

I've been 7 days without cigarettes and it's a struggle. I've been reading around on here and know what I should be asking when I see the doctor tomorrow. My illness is not as severe as some of you, but I have also learned (from reading on here) that exercise is a tremendous help. I've had a brisk 15 minute walk today and hope to build on that each day

I shall ask for the Fev1 score tomorrow and hope to be able to improve on that too.

Sorry if I'm sounding too bright and breezy, but after reading around on here, I've at last got some strategy to dealing with what life has thrown at me and have now got some sort of a future plan.

Thank you for reading this

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  • Posted

    Hi Metermaid,

    Just wanted to say hello and I hope that you feel better for posting.

    I can't imagine what you are going through having lost your husband but I do completely understand where you are coming from re the 'self inflicted' illness. What I can't get over is how not one of the health professionals has told me it's my own fault. They have all been very supportive and helpful.

    Well done on the stopping smoking. I had my last cigarette on August 5th and to be honest have missed the rituals rather than the nicotine I think.

    I am going to see the respiratory consulatnt at the hospital on Wed 20th Oct. Until now I have seen a doctor and a respiratory nurse.

    I hope that you keep posting so that you don't feel 'alone'. Vanessa and Jacee and Carole have really helped me just knowing that they are there.

    Hope you have an informative meeting with the doc tomorrow.

    Take care for now,

    Ann

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  • Posted

    Hi Metermaid,

    So glad that you have joined us - first, do bookmark this page (if you haven't already) as it can be quite hard to find again otherwise - like Brigadoon- we seem to disappear into the mists of time :wink:

    I see from your post that you have your Doc's appointment today, so I am hoping that it will have gone well for you and that you have been given your FEV1% number, appropriate meds etc. Depending on the classification of your copd ie. mild /moderate /severe, you may or may not have been given different meds / appointments for X rays etc. Also hopefully you will have the 'flu and pneumonia jabs. I do hope you have good news that this has been caught in the mild stages, but if not, do not despair, there is much you can do to control this and improve your situation. Also know that you now have a whole group of friends, countrywide, who will support, comfort and share with you all the way.

    I too kept my condition secret for the first couple of weeks - I felt I couldn't tell my son or daughter until after i had stopped smoking for a while. I am sure eventually you will find a way to tell those closest to you, and that after any initial shock they will be very supportive and helpful. In my case I thought through what I was going to say first, how I would explain the disease to them, and when/ where I would do this. With my son- aged 33 at the time - I waited 'till we had the chance of a nice spring walk along the beach together - (although I had secretly told my daughter in law first so that she would be ready to support him too in his initial upset / anger).

    My daughter was only 14 at the time (she is 16 now) and so I used a more subtle approach whereby it was a gradual process and realization of the implications. First I mentioned when i had a doc's appointment (\"for my bad chest which didn't seem to be clearing up despite giving up smoking\"wink, later I showed my inhalers to her with comments on how great they were and what a big help to my breathing. Then when my hospital consultants appointment came through I explained it was to \"get to the bottom of the problem of my chest/ breathlessness\". After that appointment I explained that it was something called COPD and that from now on I have to take good care of my health. I used a similar approach when it came to going on oxygen. Using this 'drip feed' method, she had a gradual understanding of it over time, rather than a big initial shock. Without her really being conscious of it, she now knows almost as much about copd as I do, and knows emrgency proceedure, 999 drill etc should they ever be required. So if you have loved ones you need to tell, think it through calmly for a while first and I'm sure you will be suprised by just how supportive everyone is - I never felt 'unloved' befre - but I have to say I have never felt AS loved as I do since having COPD!

    Well, I am still in my PJ's, so it's high time I got showered and dressed - I overslept this morning and only finished my daily exercises just before posting this.

    I will check back later to see if you have news of your FEV1 or what happened at the Doc's. So glad you have joined us,

    Lots of love Vanessa X

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  • Posted

    Hi there Metermaid, lovely to hear from you and I am glad the stuff you have read here has been of help. The initial diagnosis can knock you for six, especially coming alongside the trauma of losing your hubby. A gigantic WELL DONE in leaving smoking behind. You will soon realise the tremendous benefits of this. And don't worry about the self-inflicted bit - I am the only one that has ever said it to me.

    Your strategy sounds good to me. You seem sorted, well prepared and know what you need to do/ask. I hope your appointment went well and you got the info and prescriptions you needed. I can recommend two good actions here:

    1. You are right, exercise rules and taking as much as you can without causing yourself distress can really help in maintaining a better quality of life and keeping one active.

    2. Gathering information means that you can understand more about your condition and monitor the health provisions with more insight - knowledge is power.

    3. There will inevitably be \"down\" times. You can always reach out on this site and, as we are all in the same boat, there will be no blaming or judging, just help and support.

    Welcome, I hope you become a regular visitor.

    Jacee

    xx

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  • Posted

    So, when I learn to count er...three not two

    Jacee :oops:

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  • Posted

    Thank you Vanessa, Anne and Jacee. I didn't ask the doc for the Fev score because I'm frightened of what he might tell me, although I know I will have to face this - I have an appointment again for next Tuesday and will ask him then. By the time I'd plucked up courage to go to the doctor I was already pretty bad and could barely blow into the Spirometer, so the result will be poor. My chest was again very rattly and wheezy today, so he's put me back on Prednisolone (8 x 5mg each day). I've been on the Spiriva (tiotropium) once a day for the past week and today he's also given me a Turbohaler of Budesonide/formoterol (two puffs, twice a day). I think he thought it was something he would be able to deal with in the GP Practice, but he has now referred me to a Chest Consultant but the earliest appointment is 1st December, so I will have to wait until then. The worry today is that I have been coughing up some blood. I don't normally check, but I did so yesterday and wish that I hadn't. I've already had a chest xray and apparently it was 'clear' !!

    I've done another 15 minute walk today, to be honest I felt as if I'd rather be at home in bed but I'm going to push myself while the weather's good.

    I'm frightening myself to death here. I haven't told anyone about the diagnosis and will try to keep it to myself for as long as I can.

    Thanks for your support. At least I don't feel entirely alone.

    Rita

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  • Posted

    Hi Rita, a referral to your chest consultant is excellent news though the wait is not. In the meantime please try not to panic. I was also pretty bad at point of diagnosis and had never heard of COPD. The really important thing is not to go back to smoking, everything else is secondary to this so you have already taken the most important step. Worrrying is as bad for you as exercise is good so try not to get stressed. If keeping this to yourself a while helps all well and good but if it is worrying you perhaps you could identify one person you could tell and talk things over with. If not, remember we are here.

    Don't be frightened of your FEV1 score. Ask for it as a percentage and it will become your friend! I started out at 22%, rose to 29% when I stopped smoking at took some exercise and was 30% at my last check! I am SO proud of myself as the usual trend is downwards. When you are unwell it will be worse and when you ar relatively well it may be a little better; learn what is \"normal\" for you and then you can monitor yourself and this is mostly a positive expereince. My son has also been referred to a consultant but has missed his last two appointments as he is frightened of what he may be told. His FEV1 reading is much higher than mine and he manages pretty well but fear of the unknown can be very powerful. Again - knowledge is power. I know many people live with this condition for many years and although it does deteriorate you can slow it right down by looking after yourself and doing the sensible things.

    The main thing is you now know what you are fighting, you are going to see a specialist in your disability and you have people who know largely what you are going through on this site. And you have stopped smoking, no mean feat so very, very well done. Bet your family is proud of you? Keep in touch

    Jacee

    xx

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  • Posted

    Hi Rita,

    I do hope you are feeling a bit better today but if you do currently have a chest infection it would probably be better to forgo the walks and stay indoors - particularly as it is getting colder now. Use your own judgment of course, if you find you feel better for it then do continue with them.

    As far as FEV1 goes, some people do prefer not to know - in fact many have never heard of it or know what it is - so you don't HAVE to know it. Also it is not the be all and end all, it just gives a rough guide to where you stand, plus a means of monitoring stability / progress/ decline over time. Also remember that the very first one is usually the worst as we still have infection etc.

    I think Jacee is right that it might be a good idea to find at least one person you can talk to about this. I too had a wait of about 10 /12 weeks between my initial diagnosis and the consultants appointment - so by the time it came around I was no longer 'going it alone' but had my son with me - and it made me feel so much stronger.

    Do take care of yourself Rita, and keep in regular touch. I see from your profile that you are from Jacee's neck of the woods - I hope to get up there for a short holiday sometime in the next few months - so we may meet up for coffee and cupcakes one day (or a ruddy good curry - can't get a decent one in Cornwall)! :D

    Lots of love Vanessa X

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  • Posted

    It would be lovely to meet up if you do get up to Yorkshire, Vanessa. In the meantime - it seems that the antibiotics and the steroids have done their stuff and the infection has cleared up. Before I see the doctor next Tuesday are there any breathing/lung exercises that I could make a start on? I seem to be filling my lungs Ok, it's the emptying of them that's causing the problems. Admittedly my GP is not a COPD expert and I will have to wait until I see the Consultant on 1st December for the full story, but I want to be doing something. The walking has only happened twice this week: other commitments have done their best to stop me, but I intend to carry on and hopefully build up the distance that I can walk.

    I must admit that I am still telling lies to people: I have told them that I have developed late onset asthma, which seems to be more acceptable to the general population than COPD.

    Any help you can offer would be gratefully received.

    Rita

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  • Posted

    Hi Rita,

    Glad that you are feeling better and feeling determined to carry out an exercise routine. I am trying gradually to build up my walking but I get very tight chested and then I begin to panic. I only have ventolin at the moment but seeing a respiratory consultant on Wednesday so he might prescribe something else then.

    I don't lie to people but I just tell them as much as they need to know without going into all the details. I don't know about you but I was very brazen about smoking - so why can't I be about this illness? Shame I think! sad

    Anyway at least we can all be honest on here.

    Take care,

    Ann

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  • Posted

    [quote:3943405834=\"Metermaid\"]----------- Before I see the doctor next Tuesday are there any breathing/lung exercises that I could make a start on? I seem to be filling my lungs Ok, it's the emptying of them that's causing the problems. -------------------

    Any help you can offer would be gratefully received.

    Rita[/quote:3943405834]

    Hi Rita - re breathing exercises.... a good tip is breathe out fully before you breathe in. Also practise pursed lip breathing and another is to make your outward breathe longer than your inward breathe.

    Breathe Easy and smile :D

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  • Posted

    Thank you for your encouragement, Guest. The breathing out, even with pursed lips, results in a huge cough. Perhaps this will ease when I've gone longer without cigarettes. People have always said that you can tell a committed smoker because they end up with 'cat's bottom' wrinkles around the mouth. Over the past 50 years of smoking I've moisturised regularly in order to try to prevent this phenomena, and now I'm deliberately encouraging it!!! It's a strange life.

    Today I've done 15 minutes of walking and discovered a lovely cafe, just at the end of the walk. So - toasted teacake, dripping in butter, with a cafe latte. Because I'm worth it!

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  • Posted

    [quote:2ba82c6ab8=\"Metermaid\"]Thank you for your encouragement, Guest. The breathing out, even with pursed lips, results in a huge cough. Perhaps this will ease when I've gone longer without cigarettes. People have always said that you can tell a committed smoker because they end up with 'cat's bottom' wrinkles around the mouth. Over the past 50 years of smoking I've moisturised regularly in order to try to prevent this phenomena, and now I'm deliberately encouraging it!!! It's a strange life.

    Today I've done 15 minutes of walking and discovered a lovely cafe, just at the end of the walk. So - toasted teacake, dripping in butter, with a cafe latte. Because I'm worth it![/quote:2ba82c6ab8]

    Good luck with it all. Pulmonary Rehabilitation might be your best bet, ask the doc when you see him/her next. You may find the education program will help you a lot especially as you are having such a hard time at the moment.

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  • Posted

    I've done my one mile circular walk again today, finishing with a panini and cafe latte! It will have to stop (the eating I mean). I see the doc again tomorrow and feel a lot better. I mentioned to him last week that I was thinking of buying some hand-weights, as others on here have mentioned. There was a sharp intake of breath and he issued a categoric \"No\". I want to be doing more. 'Guest' here mentioned the Pulmonary Rehabilitation Course and I have looked it up on the internet in relation to my own local area. It's still at the discussion stage, so an early participation in that doesn't seem to be on the cards.

    I feel so lucky to have found this site and am grateful for the advice and help of others who have 'been there and got the t-shirt'

    Rita

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  • Posted

    Hi Rita,

    Hope all goes well with the doc tomorrow. I wonder why he was so against the hand weights?

    Have you managed to stay off the cigs? I have for nearly 3 months now. I can't believe it when I say that, having smoked for 46 years. Aagh!

    The treat at the end of your walk sounds just right for the moment. Cos you're worth it!!

    Take care,

    Ann

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  • Posted

    From: Jacee

    To: Metermaid

    Posted: Mon Oct 18, 2010 9:03 pm

    Subject: Hiya and good luck

    Good luck for tomorrow Rita. I'll be thinking of you. I have no idea why your GP would ban the weights as it is part of pulmonary rehab. Perhaps this is a question for your consultant?

    Lots of luck

    Jacee

    xx

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