Well meaning friends: Yesterday, one of... - British Lung Foun...

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Well meaning friends

Bizylizy profile image

Yesterday, one of my best friends gave me a lecture of how I should try alternative medicine for my treatment of bronchiectasis. I'm willing to try almost anything. But she had done some "research" and said that sitting in a salt cave would be helpful. It costs £99 a month. Apparently I could justify this amount a month as the amount of time I spend off sick would balance this cost out. I said that I might find temporary relief but it was not an answer. She would not have it.

Two questions for you all:

1. Have you had well meaning friends trying to help?

2. Have people found any alternative medicine that helps your lung condition?

Your ideas very welcome.

Lizzie

105 Replies

🤬

Bizylizy profile image
Bizylizy in reply to Patk1

Yep!

I haven't had any well meaning friends 'advising' me on what to do but my friends have, one by one, turned their back on me since I started being ill with chronic lung disease. Perhaps I am better off?

Littlepom profile image
Littlepom in reply to CDPO16

I guess that's why I have spent a lifetime trying to hide it and am grateful to have found this forum.

CDPO16 profile image
CDPO16 in reply to Littlepom

The forum is a good thing to be a part of Littlepom xx

Littlepom profile image
Littlepom in reply to CDPO16

Definitely. We have a safe place where our friends appreciate how we all struggle.

Bizylizy profile image
Bizylizy in reply to CDPO16

Oh no. That's awful. I'm finding that friends don't understand that every so often I seem fine, usually when on steroids, but most of the time life is a struggle. I think those that have deserted you weren't friends. You've got friends here though!

CDPO16 profile image
CDPO16 in reply to Bizylizy

Always someone here who understands and I feel that I have true friends here xx

You definitely find out who your friends are in during hard times . Who I thought was my best friend of 40 years hasn’t so much as rang to enquire about my husband since the pandemic started even though she had visited him in hospital weeks before when he was in a life threatening situation ! She lives a 15 minute walk away ! I fear the friendship is over , it’s very sad but good to know who really does care about you and who was just there for the fun times 🤷🏻‍♀️

Yes, you do find out who your friends are or who are not.

Otto11 profile image
Otto11 in reply to CDPO16

So sorry. I have found the same. 😢

CDPO16 profile image
CDPO16 in reply to Otto11

Sorry that you have found the same. My mum often said that you get what you give. I haven't found that to be true. You have friends here though xx

Otto11 profile image
Otto11 in reply to CDPO16

Thank you that means a lot. No I haven't found it to be true either x

CDPO16 profile image
CDPO16 in reply to Otto11

🤗

Otto11 profile image
Otto11 in reply to CDPO16

🤗

It's hilarious! I have had a lifetime of suggested miracle cures. If any of these 'alternatives' cured bronch somebody would be a billionaire now.🤣 it's well known that saline when nebulised can help to loosen mucus and sessions in a salt cave might lead to a similar benefit. I think some people with copd find some benefit for their breathing. However, at that price against saline costing pennies,it's not worth it for me and I'm not going to risk sitting with other people's germs.

Bizylizy profile image
Bizylizy in reply to Littlepom

Spot on Littlepom!

ElsaC profile image
ElsaC in reply to Littlepom

Absolutely with you on that!

No but 2 sisters have said ( cruelly) over the years " its your own fault ur ill,u shouldve gone to dr yesterday"!!/"oh your lucky,u dont have what dad had" - he was fit+ healthy til he was 80 and was still working and walking at my age!!!/" at least its easy4u"???! And on and on

sassy59 profile image
sassy59 in reply to Patk1

Not nice Patk1. Xxx💜

CDPO16 profile image
CDPO16 in reply to Patk1

Family like that is awful Pat. I think that we expect them to be sympathetic if nothing else. Lots of understanding people here who care and don't criticise 🤗 xx

Patk1 profile image
Patk1 in reply to CDPO16

💗

Bizylizy profile image
Bizylizy in reply to Patk1

People are sooo judgemental

That’s terrible ! I hope you have some supportive people around you 🙏 xxx

I have,thankyou xxx

Gladwyn profile image
Gladwyn in reply to Patk1

How heartless of your sisters Patk1. Must have been so hard for you. 🥺💐

Here in Ireland a leading pulmonologist was involved in a case against a Salt Cave business on the basis of false advertising.

m.independent.ie/irish-news...

I have no time for quackery or the alternative medicine brigade. I have however seen some peer reviewed articles on the benefits of Acupuncture for COPD which I plan to investigate further.

Bizylizy profile image
Bizylizy in reply to ck101

Thank you ck101 I'll send the article to my friend.

Countless times , but mostly from my family . I dont have bronchiectasis but COPD My late father was very well meaning , always sending emails with remedies .

His father was the same , used to order cures from Heath and Heather for his bronchitis .

People here have tried salt lamps and I tried a salt pipe once .

For some reason I once tried garlic steeped in honey …..Truly disgusting .

I do take garlic pills now and then, but they are contraindicated for some people . Always check carefully.

We don’t have anybody who would say anything regarding Petes heart/lung issues. I don’t think they’d dare. Not found anything alternative to help Pete. He tried a salt pipe once but it made him choke. He’s ok though and I keep a close eye on him. Xxxx

Osha profile image
Osha in reply to sassy59

I think you are the best medicine for Petes I’m sure you are looking after him very well

sassy59 profile image
sassy59 in reply to Osha

Thank you Osha, I do my best. Xxx💜

Oh dear, Well Meaning? When people are treated with proper medics, alternative treatment can be dangerous if used alongside medical treatment.

1) I have had people telling me I take to much medicine.

2) I hav enever looked for or found alternatives to treat my lung and other conditions..

Bizylizy profile image
Bizylizy in reply to Ern007

I know the "taking too much meds" brigade too. Why do people feel they need to make judgements?

Ern007 profile image
Ern007 in reply to Bizylizy

They have been brainwashed into believing that for instance. homeopathy can be an alternative to prescribed medicine. Medication diluted many many times, IMO can't possible work, are these people for real?

How rude of them, people have no idea that for many inhalers are lifesavers. I believe in alternatives like acupuncture, Chinese herbs, medical herbalism and safe supplements but certainly wouldn't risk my asthma being out of control. I was once explaining to a very good (I thought) friend about bronchiectasis & the importance of keeping airways open , under her breath she said "hyperchondria more like". I was so shocked

sassy59 profile image
sassy59 in reply to peege

Not much of a friend then peege. Xxx

CDPO16 profile image
CDPO16 in reply to peege

Good heavens peege. That was no friend at all. It is hurtful when friends we thought we had turn out not to be. xx

Alberta56 profile image
Alberta56 in reply to peege

Unbelievable. What a silly ***.

Patk1 profile image
Patk1 in reply to peege

DisgracefulBetter off without her ❤

Caspiana profile image
Caspiana in reply to peege

😮 What an awful person. 😡

peege profile image
peege in reply to Caspiana

I'm a very forgiving person and won't bear grudges (at least try not to😬). I've since talked about it with her, she apologised, said she couldn't believe she could have said something so insensitive & suggested she may have been joking. I explained that I'd only told her because I trusted her and she might be careful with people's feelings in future.

Caspiana profile image
Caspiana in reply to peege

That's the best outcome possible. I'm glad it worked out Peege. xx 💕

CDPO16 profile image
CDPO16 in reply to peege

I'm glad you were able to straighten things out with her.

Bizylizy profile image
Bizylizy in reply to peege

Shocking!!💙

Bizylizy profile image
Bizylizy in reply to peege

Glad you got things sorted with her tho. x

Gladwyn profile image
Gladwyn in reply to peege

Some friend!! I hope you let that one go Pen or changed her way of thinking! Must have been so hurtful hearing her say that. Grrrr 🥺

Hi Lizzie, tell your friend if she really believes that, I have some Magic Beans to sell! 😀😀

Ian.

Bizylizy profile image
Bizylizy in reply to Ian1967

I'll tell her!!😆😂🤣

Peopl don’t understand,that’s the problem.I’m lucky in that I was working till 3 years in a demanding job.

I wanted to work till I was 67, my illness stopped me in my tracks 2 months early.

I’m suffering from non specific Interstital pneumonia and undifferentiated connective tissue disease. Hav symptoms of rheumatoid athritis,Sjogrens and Lupus..

IM on Myclophenate.last year I was on 2 mgm daily,I spent most of last year we am

between the bed and the sofa.

Since I’ve come down to 1.5 daily,I feel. Lot better,butI can’t do my son and his wife bought me a salt lamp.

I don’t know if it it makes an difference,but it looks pretty.

If anyone mentions alternative therapy,we smile and nod.

The thing is when we’re so ill is that can make us vulnerable.

My friend suggested that we went on a cruise to help my chest.

I’d discussed it with the GP the week before.

She said that cruises are a * cesspit of infection ( this was before COVID ).

She said you can catch anything.

She also told me that the hospital on ship would be insufficient would be inadequate for my needs,* they would just helicopter you off ! I was reall grateful for this conversation as I was able to quote it back to my friend.

I’m sorry to ramble on tak care

Croydonia profile image
Croydonia in reply to Oshgosh

When we came back from a cruise years ago, I brought back with me a bad chest infection. The respiratory nurse said, “what do you expect, confined on a ship with 3000 other people?” We’ve never again been on another one!

Oshgosh profile image
Oshgosh in reply to Croydonia

I hope you soon shook it off.Doc also said that she saw people who were still ill for months after returning from cruises.

She also said people with chest/ lung problems should savoid hot tubs ? X

CDPO16 profile image
CDPO16 in reply to Oshgosh

Never fancied a cruise nor hot tubs. I imagine the latter to be quite unhygienic. I once worked with someone who had had a jacuzzi bath fitted and regretted it. She said the jets were a nightmare to keep clean so I suspect the same may apply to hot tub jets.

Gladwyn profile image
Gladwyn in reply to CDPO16

I read about the gunk found in the jets of jacuzzis and that put me right off. I had been in one in a holiday cottage and shudder to think what I might have been sharing it with!! Never again. 😱

CDPO16 profile image
CDPO16 in reply to Gladwyn

As I suspected! Glad you came to no harm x

Gladwyn profile image
Gladwyn in reply to CDPO16

😀😱

Bizylizy profile image
Bizylizy in reply to Oshgosh

Dear Oshgosh, You have been through the mill. I think the smile and nod tactic is great. I won't argue with my friend about her ideas. I'll do what you do! My hubby and I had a cruise booked for May last year. We cancelled at the outbreak of Covid and got our money back. I was interested in what your GP said. We won't be booking another one.

Sending prayers and best wishes. Thank you for your reply.

💙

Oshgosh profile image
Oshgosh in reply to Bizylizy

What I do now is smile and nod vacantly.Sometimes I can’t hear well anyway,so that’s a reasonable excuse.

So I only listen to what I want to hear these days.

I know that’s really bad,but I’m beyond caring.

There are a couple of people from NHS.They have some understanding,but the only place I can have aConstructive conversation is on this forum.

I met up with Friend of mine who lectures in Istanbul yesterday

He asked how I was.prettysh** really was the reply.ok ,we c carried on chatting and having a drink.that’s the response I want.take care

Gladwyn profile image
Gladwyn in reply to Oshgosh

Glad you enjoyed the time with your friend. 😀

Gladwyn profile image
Gladwyn in reply to Oshgosh

You didn’t ramble ! 🦋💐

Oshgosh profile image
Oshgosh in reply to Gladwyn

You’re so kind

Hello Lizy, 👋😁

Oh goodness , haven't we all. From vegan diets, body cleansing, fasting, hanging yoga to "only Jesus can save you". I've heard it all. I don't know anything about salt caves. But through experience the only "alternative medicine" I've found that has helped me live is a good diet , exercise, trying to have a stress free environment (without people trying to rub their notions of what is good for me in my face), doing things I enjoy and spending time with people who make me happy, oh and a big pinch of sheer grit.

Friends are funny things, they can love you a little too much sometimes, till the lines between being a concerned, loving friend become blurred and they become, a pushy nuisance. I'd just be kind but honest if you feel it's all too much. I've done this on occasion, and we either hug and make up or they clear off for which I say good riddance.

Best wishes to you,

Cas xx 🍀☕

Good advice and I fully agree on what works.

Bizylizy profile image
Bizylizy in reply to Caspiana

Thank you for your wise advice Caspiana xx

I have emphysema stage certain family members have suggested alternatives which like a fool ive tried alot of them even when I couldnt afford them I spent to jeep them quiet but not anymore I cant afford to do it to keep family being on my case some just don't try to understand x

These alternative meds are so expensive. x

I also meant to say I tried Salt cave aswell but it didn't help bronch/emphysema

One of my friends told me that I couldn’t possibly have bronchiecstasis if I was still walking. I mumbled that it had been diagnosed by a respiratory consultant at the Brompton from a ct scan, and she replied that I was clearly seeing doctors unnecessarily. It seems to me that sometimes people close to us want to deny the existence of any illness because they can’t face it. The same with suggesting alternative remedies - they want the illness to be miraculously cured perhaps?On that front, I have found acupuncture to be helpful, but it depends on finding a good acupuncturist, and mine has moved to Holland sadly. 🙁

Caspiana profile image
Caspiana in reply to Hellodolly

Good grief , there's a word for that kind of friend that I dare not utter in polite society. 😠

Hellodolly profile image
Hellodolly in reply to Caspiana

🤣🤣🤣🤣I know…….

Oshgosh profile image
Oshgosh in reply to Hellodolly

Is she a friend or an ex friend ?

Hellodolly profile image
Hellodolly in reply to Oshgosh

Embarrassed to own up to the fact that she is still in my life!

DJS6 profile image
DJS6 in reply to Hellodolly

One of my oldest, closest friends, said to me after hearing of my diagnosis 'Oh, I hear you have a touch of COPD' !!!! - At first I was really shocked and a bit upset, but when I told another close mutual friend (who is a nurse) what she'd said, we had a really good laugh about it, along the lines of 'not to worry Madam, you just have a touch of a chronic, progressive, disease, which is a touch incurable!! 😆😆😆

Later, when they were sending out shielding letters to CEV people, I mentioned to same friend that I expected I'd get a letter (which did get 2 days later). She was adamant that there was no way I'd be on the shielding list....and really genuinely shocked when I was!! I think she just doesn't get it?

I totally agree that sometimes close friends are in denial when we are ill, because they don't want it to be true so just can't accept it...at least she hasn't suggested any alternative treatment or cure (as yet!!) xx

Otto11 profile image
Otto11 in reply to DJS6

Oh I had the shielding list scenario ending up in an argument with a good friend who insisted that if I was in it then so should she be as she has several auto immune diseases. I tried to explain that having Hypothyroidism dosnt make you immunosuppressed but we had to agree to differ in the end. On that note I had all my friends ( what few I have left) tell me that shielding was ridiculous etc etc & that I was being ridiculous going along with it.

ninelives profile image
ninelives in reply to Otto11

Me to!

Otto11 profile image
Otto11 in reply to ninelives

It’s hard sometimes isn’t it? I feel people think I’m being a drama queen or slightly OTT even my best friend hasn’t a clue how much our illness impacts on our lives. Take care x

Gladwyn profile image
Gladwyn in reply to Otto11

Lol I’ve always been a bit of a loner and I’m so glad I am after reading what some ‘friends’ have said and how they have behaved. If I ever was in doubt about my need for alone time, I’m not now!

Otto11 profile image
Otto11 in reply to Gladwyn

I think maybe you’re right x

Gladwyn profile image
Gladwyn in reply to Otto11

😀

Bizylizy profile image
Bizylizy in reply to Hellodolly

Why do some people think they know more than doctors who have spent 7 or 8 years training? I agree that sometimes people can't face others with chronic illness. For them illness is something you "get over" and you must be doing something wrong if you haven't got better. I have lost friends who can't understand that I can't go out with them and work. I barely manage to just work sometimes. Thank goodness I can work from home.

Sometimes you have to take their input with a pinch of salt…no pun intended 😂 I’ve had people tell me all sorts, ranging from acupuncture to stopping medications and using breathing techniques. FYI non of them actually worked surprise surprise. As like some members, I also lost friends as I was no longer available 24 hours a day. My true friends though weathered the storm with me and continue to do so. Unless you have a chronic disease with frequent peaks of acute illness, then you really are not in a place to dish out advice that’s been sourced on the internet. Millions of pounds are spent every year on discovering new treatments and testing the efficacy of how well they do or do not benefit the sufferer. Everything has a downside but you have to weigh up if that is minimal in comparison to how you suffer with your condition. You should not have to explain your choice in treatments.

Bizylizy profile image
Bizylizy in reply to Jandm

Too right Jandm!

WOW this post got a reaction! I broke the news of my diagnosis of both metastatic breast cancer and organising pneumonia to my long term well meaning friend just last night. I had been putting it off knowing her likely response. To type she told me not to believe that my cancer was incurable. Amongst other suggestions she came up with a salt pipe for my organising pneumonia!

Oshgosh profile image
Oshgosh in reply to Catrat

Speechless,I do think that sometimes it’s to protect them from the implications of what’s happening. I hope you are looking after yourself and getting good care xx

Catrat profile image
Catrat in reply to Oshgosh

To be fair to her she was being very restrained with her opinions/advice. We go back many many years and she knows we have different attitudes and beliefs about healthcare. We agreed that I would let her know if I wanted further information on alternative treatments. But at the same time she feels that she wouldn’t be a good friend if she didn’t let me know some fundamentals!

Caspiana profile image
Caspiana in reply to Catrat

Oh my 😱😱

Otto11 profile image
Otto11 in reply to Catrat

I’m so sorry to hear your news. That must be so difficult to hear. Sending gentle hugs your way x

Bizylizy profile image
Bizylizy in reply to Catrat

AHHHH! Smile and nod, smile and nod!!!😉

Bizylizy profile image
Bizylizy in reply to Catrat

So sorry about my last response -I meant smile and nod to your friend. I'm sending hugs and prayers and best wishes to you. xx

I have a friend who always tries to tell me about herbal remedies etc that I should have for my bronchiectasis, my Graves Disease (over active Thyroid ++++) , reflux and "asthma" as was! I just tell her thank you but I'm following what my consultants say. It's interesting as the remedies never seem to help her even though she takes them!

Yes I work with ecologists and some of them frequently encourage alternative medicine, herbs, chiropractic, acupuncture and many more. I just smile sweetly and rely on my respiratory team for advice. Before you try any suggestions check with your respiratory team, that way no harm done.

Good advice!

Sensible 😀

I think people who haven't had serious illness just dont understand that we cant take a spoonful of honey and feel better. I have lost a few what I thought were good friends as they thought I was "giving in " to illness. They just didnt understand that on days where my rheumatoid was so painful I couldnt just take of for a good night out, or that my coughing all night and constantly blowing my nose wasn't self induced. I sometimes think I am better of alone but it makes for a lonely life, luckily I do have a couple of good friends who do understand and dont judge me. I wouldn't waste your money on a salt cave, they may help people who have had a cold or minor complaints, you would be better off spending a day by the sea and much more enjoyable x

Bizylizy profile image
Bizylizy in reply to Izb1

I know my having to keep stopping talking to cough my friend prompted her "advice". Unless I get new lungs the coughing ain't stopping!!Sending hugs xx

Izb1 profile image
Izb1 in reply to Bizylizy

I will pray your cough eases if only a little, luv n hugs x

Oh golly yes several "friends" who advised me after a respiratory arrest that it was "all in your mind,as asthma is never serious",or following a 3 week hospital admission saying "you look fine to me".Alternative treatments included salt pipes,cold baths,vigorous exercise etc etc.....

You are not alone Bizylizy !

You know your body best as you have lived with it all your life.x

Bizylizy profile image
Bizylizy in reply to ninelives

Thanks, Ninelives! Asthma is called the silent killer just because people don't take it seriously. Another person suggested "smile and nod" when these so called experts dole out advice. That's my intention now!!😉

Cannabis oil. Are you English or American, it's not legal here but works.

Oh yes!

My mom uses alternative therapy for her copd and emphysema. She has less exacerbations and infections this way. Not sure about the salt caves though. Wouldn’t hurt to try it in my opinion. If it doesn’t help then you don’t have to continue. My mom uses natural methods in conjunction with prescriptions.

I tell them that treatment has been used for milenia and modern medicine replaced it because it didn’t work.

Our local BreatheEasy group organised a trip to a 'Salt Cave' so that we could experience it and decide if it might be beneficial to us.

It was a wonderfully relaxing experience and, to be fair, I seemed to shift more mucous than usual the next day. However, you would need to go quite regularly to get any kind of benefit, in my opinion, and this would prove costly.

I think it could be a pleasant additional therapy, but I would certainly not ditch the meds in favour of it.

I do have friends who like to 'advise' me, but also have another friend who often looks at me in all seriousness and says, 'But WHY are you like this? WHY is it happening?' My answer, as always, is, 'If I knew that, I would be very wealthy!'

xx Moy

Bizylizy profile image
Bizylizy in reply to MoyB

Thanks for that MoyB. I agree, the salt cave sounds lovely if only we could afford it!!

Re your "WHY" friend; when you've got the answers, please tell me so I can make a fortune too.

😉😅🤣😂

MoyB profile image
MoyB in reply to Bizylizy

🤣🤣🤣xx Moy

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