Something extreme: My partner of 1... - British Lung Foun...

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Something extreme

challny
challny

My partner of 15 years is having friends over for dinner tonight. We don't live together, but in separate houses one block apart. For all these years I have taken care of her yard. I knew it would be nice if I could mow and tidy up for company. But today as I sit here I realize for the first time that I just cannot do it. I just can't. I have also in the last month stopped playing golf, something I've always loved. I want to continue, I just can't. These realizations are having a shattering effect on me. I can't handle this disease anymore. I just can't. What's the point if all you can do is sit on the sofa or lie in bed without sleeping? I really don't want to go over for this dinner, either. I don't want to see anyone. What do we do? I've been to the doctor, I'm on every medication. There is nothing they can do for me. Thanks for listening. This is my only outlet. On top of everything else, I hate myself for complaining to a caring group of people, many of whom must be going through the same thing.

29 Replies
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Damon1864
Damon1864Volunteer

Hi, please try not to worry, just because you can't do certain things any more there are always other things to help you. Think of your family and partner and friends surely they are worth living for. Just sit and try to relax I'm sure you will come up with something. So many of us have felt the way you do now, we need other things to occupy our time and minds, not physically strenuous things but more sedate stuff. You may not like what I have said but it's just facts we have to face. Think about all the good things not the bad things, I have every faith in you. Let us know how you are getting on, take care.😊 Bernadette xx

Try and focus on what you can do challny. My husband has a very positive mental attitude despite struggling to breathe and being in pain.

Pete does reflect on what he used to be able to do but he’s come to terms with it all now.

Enjoy yourself and the dinner. Xxxx

Hi I know how you feel and how bad it is for you I don’t think your complaining,we are here to listen and give support I feel sorry for the younger end that feel their life has come to an end having this horrible disease is a struggle for all of us but when like you can’t go out and enjoy yourself it’s hard

I have started my family tree and yes watch television can’t do much more now I am older ( I guess) than you winter was a bum then the hot weather and I don’t think I will get through another winter But I am 76 s o that’s my moan you see we can all have a good moan that’s what we are here for

You take care

Dorothy

I really think you need to speak to your GP & tell him/her how you feel to get some help that you deserve. Good luck. P

Hi Challny... I do think alot of anxiety goes along with the disease as well. I know you don't feel like doing things. Yet the more you try and do...you will gain confidence and be in control of your life again. You will get there. I have chronic asthma...yet I feel I'm getting a bit worse with it. Please try and get out...if you have friends and places to go...do it by all means it will make you feel better. I'm on anxiety medication. I wake up in middle of night with panic attacks. Yet if I had excercized that day and socialized...I sleep better. It is very hard to accept but you can do it. You will have good days again. Don't be afraid to live....bless you... your in my thoughts!!!

It is really hard when you realize you can't do certain things anymore. In your mind you're still the same but the body just isn't up to it anymore. It's a bit of a shock. Compared to a lot of people I'm able to still do so much, and I don't think I'd be as positive or strong as many others. Some days I feel positive about things and other days I feel like I could just give up. There is no easy answer to what we do when faced with this new reality. It sucks, after all. But, I try to remind myself how fortunate I am and how much I do have and compared to so many people I am blessed. Sometimes though I just want to hide away from the world and not have to see anyone or deal with anything. Yet somehow I get through to the next day, I don't know how because I'm not brave or strong. I guess we just get there and sometimes the next day isn't so bad. I hope you can find some strength from within you and from the people around you.

Hi challny . 👋

Your feelings are totally understandable and normal. A year ago I could walk 3km 🚶 and I made a point of it. Now , I am extra , super pleased if I manage one. I find myself in despair at times, for the things I can no longer do, but I am substituting them for things I never thought I'd do. Just as an example, I have recently started making a small Christmas village in my box window. I know it's early, but it gives me so much pleasure. I am slowly collecting little figurines and working on lighting and I have no doubt by Christmas it will be a sight to behold. (Well , for me anyway). It doesn't make me breathless, and allows my mind to take a rest from other issues. It's something I can work on even on the not so good days and the rainy days too.

Take heart dear Chall. We have our down days, but as sure as the sun rises, 🌞 another bouncy day is around the next corner.

*Hugs*

Cas xx 🍁🍃

P.S. I am sure a neighbourhood kid would love to earn a little extra pocket money by mowing that garden. 😀

I would like to thank everyone for the kind and thoughtful replies to my post, and I wish all of you happiness and good health. Caspiana, just a few month ago I was walking 5 miles, then it went to 3. In the past couple of weeks I've been doing almost nothing. But I will amend that a bit by saying I live on the U.S. Gulf Coast, where it is extremely hot and just as humid, and here it is late September. Perhaps when it cools off just a little I can do some more.

Caspiana
Caspiana
in reply to challny

Hello challny .

My region of Japan has an extremely humid, muggy summer season. It really, really impedes my outings a lot. When autumn really hits, then the cool, crisp air does it's magic, and walking becomes easier and pleasurable again!! Hang in there. xx 🍁🍃🍁

challny
challny
in reply to Caspiana

So, Caspiana, can you tell me how you ended up in Japan, and from where? Do you like it? How is . the health care. Don't mean to interrogate you, just curious. Be well.

Caspiana
Caspiana
in reply to challny

Hi Chall.

I am a Japanese national.

Health care in Japan is not free, we have a government run and subsidised insurance system. It's complicated to explain, but for working people insurance fees are deducted from our salaries, and family members can be under another family member's insurance. We pay between 20% to 30% of our medical costs depending on income. There is also support for low income families and individuals. People like me, who have a chronic illness and have tremendous medical costs can apply for and receive aid that caps out medical fees so we only need to pay a certain amount each month no matter how much treatment we receive. The upside to paying is that we can walk into any hospital anytime, anywhere and get treatment and tests on the spot. The good thing about medical here is that medicine and treatment costs are strictly regulated. So, no hiking up of prices for medicine or doctor's fees for profits sake. I suppose the bad thing is it's not free, but it is affordable and we can't have it all can we?

Have a great day! 😄😃

challny
challny
in reply to Caspiana

Thank you for your informative reply, Caspiana. Healthcare is very complicated in the U.S. too. I have a feeling everyone around the world knows that. I am old enough that I am now on Medicare, and that helps a lot with medical expenses. So far I have avoided any hospitalizations because of COPD, so my only costs have been a few doctors visits and medications. The meds can get pretty expensive, but Medicare helps with those, too. Obamacare was a good idea and I still support it, but I got in some real trouble with it and ended owing the IRS $7,000 for 6 months of coverage. That may sound unbelievable, but unfortunately (for me) it's true. That is a crippling amount of money for me to have to repay.

Caspiana
Caspiana
in reply to challny

That is a lot of money Chall. How horrible for you. I am a member of a lung transplant support group and 95% of the contributors are American. When I read about how people have to fundraise and complications with medical coverage before, after surgery and during convalescenece, I often think it is even more stressful than the actual ordeal of the operation. 😔

Hi I am only mild copd but find an enormous difference when it is humid. I don't realise it is until I try and walk and just feel myself going slower and slower and getting really out of breath. Maybe this is the case for you too in which case when the weather changes like you said you will be able to do more.

Keep as well as possible challny, and never worry about moaning on here. We all do it sometimes and we are all here for you. x

Hypercat, may I ask what your FEV1 is? I just saw my lung doctor two weeks ago and she said mine was 70 percent, same as in February. She said I was mild and I should not be feeling as poorly as I say. But I am feeling poorly. Very. But a previous time she said I was moderate. I guess she can't make up her mind. I'm wondering if docs will lie to you to keep your from freaking out.

Hi, I always feel rubbish and struggle when the season changes (constantly tired and struggling to breathe at present) it doesn’t seem to matter if it’s hot to cold or the other way around but after a couple of weeks my body seems to adjust....until the next season anyway

Chalny, I am sue you aren't the only one who has had these very low thoughts from time to time. I hope you changed your mind and went for the dinner. Perhaps you should speak to your Dr. about your feelings

We all get whear you are coming from. We all struggle at times. But i think you need to go back to your dr (im no expert) it sounds like your struggle to carry on as normal is causing depression. Please go sooner rather than later. Hopefully they will be able to help. Good luck

I feel exactly as you do hun. I spend most days on the settee watching TV. I'm visiting my Dr today. Luckily she's amazing and I can talk to her about anything and everything. I hope you can do the same with yours xxx

challny
challny
in reply to EmberDog

Hi, EmberDog, and thanks for the reply. I hope your doctor can help you. How long have you had COPD?

EmberDog
EmberDog
in reply to challny

I don't currently have a definitive diagnosis only being told I've got floppy airways. I'm onto my second lung specialist. My first specialist said if I was 60 yr old who smoked 100 a day all my life he wouldn't be surprised at how bad my lungs are. I've never smoked anything in my life. Xxx

Hi Chall, As everyone has said, During their Lives with Lung Disease, Anxiety steps in, like the little Devil it is. I too had to see my GP, she talked and put my Mind at rest, Hubby was with me, he cried cos I hadn't told him how I truly felt, She did not give me tablets, which I didn't want, she gave me Phone Numbers, which are next to my Phone, Luckily I have not had to use them.....We cannot live in the past of " I did This or that", we are Older, we have an Illness, We have to Be POSITIVE and put our minds to other daily Targets, As Cas Said she is doing something to keep her Busy leading up to Christmas......I do, by Going to Breathe Easy Classes to exercise and meet my Friends whom I've made there, I go to the Gym and Compete against myself. Yesterday Morning I planned what I was going to do while Hubby was at work all Day & evening. I bought a New Fountain pen a few weeks ago, so I wrote Letters to my Loved ones, instead of electronic messages. There is so much you can achieve challny. Almost Everything I do is with Oxygen on. Waiting for my call for Transplant. Life is too precious my Love, we all get down, we all get up again & again. Take heed from all the Lovely replies you have on This wonderful Forum, from People who care for you. Lots of Love n Hugs. Carolina XXXX

challny
challny
in reply to Hacienda

I hope you get your transplant call soon and that it's a complete success.

Like you I have been forced to give up many interests and activities that once formed an important part of my life. Gradually I have discovered alternatives to fill my time and interest. One has been a group of people doing a get fit with easy moves which involves exercising whilst sitting on a chair!! Sounds crazy but it works and it is fun and I have met lots of new people, different people. Now we join up for lunch sometimes and so things progress. Hold on in there and look around for opportunities to try something new. Wish you well.

Hi Chalney,

I can understand you being depressed now knowing where you are in the world ie America, but what you have to get into your mind is that you are still alive and while still alive you can do whatever you can do, no it might not be what you could do last week but who is to say that next week you can maybe be able to do more. So stop being miserable pick yourself up and as the song said start all over again. PS just think we have brexit to deal with as well as being breathless. Take care now

challny

Hi, chin up & face up to the situation. There are treatments out there but you have to research them. I did for about a year, visited various hospitals tried for many "Trials".

I failed because I have a cancer which clinics turn down. However eventually have found one which works in a slightly different way. the treatment costs but I have no choice you may have after your research. I have my treatment on 3rd October with an attendant nurse over a period of about 2.5 hrs. You may not have to go this far. The UK has been slow to work with stem cell technology and as a consequence most specialist over here do not push it as an option. Like all medications it has risks but what the hell if nothing else works or U can't get accepted what is there to lose.

Don't give up, start the research NOW and carry on with life as it was do not go back onto a shell I've seen too many do that, it's not for you.

Keep well, keep up the activities (even those u don't like).

IKeith

Hi Challny,

If your doctor says that your figures show that you should be feeling better than you do, then maybe your tiredness is due to something else. For example - How are your iron levels or do you have an underlying infection? Maybe ask your GP to do further investigations. Wishing you all the best.

Hi challny

Sorry you are feeling like this at the moment as you always seemed to take a lot of exercise before . I too have mild emphysema ( and bronchiectasis) and sometimes feel anxious and have tried to push myself too far at times . I feel the trick is to take the meds and inhalers as prescribed, don’t sit around too much thinking about COPD( and every breath)don’t overdo exercise and try and work out what’s right for you I.e I can just do a little golf x times per week / month for my exercise and social needs. I can take a walk to the shop for x everyday and go and see so and so once a week. What I’m saying is take small steps / plans until you get your confidence back. Don’t cut yourself off from social activities and friends. Your swim sounded great the other day. Do you have someone to do that now and again? Do you have a dog to walk? Hope you get back to your old self despite having this nagging annoying lung stuff. Are you on anything for your anxiety to help whilst you are feeling down?

Something to help you get a good nights sleep. Your dr doesn’t seem to be very helpful maybe a fresh approach with another dr? that can look at the whole picture from scratch ? I had to change practices once as I had an old school dr who didn’t ‘get’ things. Be kind to yourself ,work on the things that make YOU happy for a change and please get some help (and supportive people around you if possible ) Sorry if this post annoys you , having read what you’ve been through only trying to help. 😘

Oh, @Chriskho, I'm not annoyed at all. I appreciate hearing from friends. So, a couple of things. I had stopped going to pulmonary rehab for about a month, but have now returned. Today I walked on the track for 15 minutes, did the rowing machine for 15 minutes (a real bitch!) and rode a stationary bike for 15 minutes. Then did just a few reps on a couple of weight machines. That's a good workout for me. I hate to say it, but I agree that I might have to find a new lung doc, despite the fact that so many have told me she's the best. But when I come in saying I'm feeling terrible and she tells me I'm fine, what am I supposed to think? I see my GP in a couple of days. I really like him and he listens to me. I am on Xanax, which I know is problematic long-term, but it does help me. Without it I don't think I would ever sleep. I hope you are doing well and if I can ever help you let me know.

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