Exhausted

Does anyone know of a leaflet or brochure available in the UK that could try and explain COPD exhaustion to a carer. Yesterday I went to get some salad dressing and knew where it should be. I haven't used it for a while. After moving 4 bottles of sauce I was exhausted so just had vinegar. When I spoke to my son about it he said it was just one row further back. I tried to let him understand that for me moving 4 sauce bottles is the same as him going up and down the stairs 4 times carrying his 26 stones. He honestly believes that I'm exaggerating. We really need info to help people understand. Is anyone doing this?

[Fleurbaby]

I have tried to get everyone to understand how tired I am after the smallest things, but no one understands. I just switch off now. The medical staff are just as bad as the public, they switch off as well. Believe me, I am exactly the same as you.

[Hidden in reply to Fleurbaby]

Hi Fleur

Believe it or not but yesterday I had a visit from a specialist resp nurse whose mother had suffered from COPD. She totally understood that it could easily take 40 minutes to get out of bed and go to the toilet. First time in 15 years that anyone has actually had a clue of what it's really like. I told her that she should write the instruction manual for carer's but I suppose it is a big responsibility. The BLF should be doing it.

[Hidden]

It’s impossible to get people to understand how disabling a lung condition can be. Seems people have to have a disaster happen to them to develop empathy. Then that empathy is only for themselves.

[Hidden in reply to Hidden]

I am so sorry for how you feel. It seems to me that you are feeling really bitter. If you need to have a rant this is the best place to do it. We all understand and probably most of us have ranted and raged about the unfairness of this evil disease. Just remember. We are all still here.

XXXXX

[Dilly2]

Hello patsyann24 I know exactly what you mean

Getting breathless all the time puts a lot of pressure on our hearts so we do get very wore out fast also if you have less oxygen circulating your body it makes you very weak specially if your oxygen levels drop right down when you move

I can't even take a pull can lid of anymore or walk very far becouse lack of oxygen going to my leg joints.

I'm lucky because my husband does understand and his there to help you'll find a lot of people on this forum get really tired it's hard for people to understand. I'm sure you'll get a lot of help.best of luck

[Hidden in reply to Dilly2]

Thanks Dilly

I have been here for quite a while and have found it very helpful and reassuring but it is only us that sees it. We need to get the information to the people who want or have to help and care for us. I'm pretty sure that when it's all over they will feel angry and frustrated that they didn't have the knowledge to do what we needed

[hypercat54]

Hi if you ring up BLF they can send you out loads of bumph about copd. Not sure how useful it is in explaining things to others.

Have you looked up the Spoon Theory? Just google it as this might help. x

[Hidden]

Hi Hyper

I downloaded and printed everything I could find about COPD from the BLF website. The resp nurse I mentioned earlier was surprised to find that it contained more info than they were giving out at their Pulmonary Rehabilitation sessions. She was not best pleased. However the information contained was for the patients no help to explain the situation to the people around them. I believe that this is very important

Not only for the health and well-being of the patients but better understanding could help the NHS save money and time. Every time a new nurse or carer comes to me it takes 2/3 visits before they have any idea how they can help me. Not only is it frustrating for me but also for them but it means that at least the first 2 hours of what should be care is wasted. Which of course is covered by the NHS

Aaarg. No wonder NHS is struggling.

Sorry about the rant. Just makes me mad. 😡

[Hidden]

My family, children, teachers, people who employed and sacked me, friends, Blue Badge autocrats and the lady at my book club who berated me for parking in the disabled space simply cannot or will not understand how totally debilitating lung conditions are.

When somebody solves the problem of raising awareness even within ones family and clise circle or finds a powerful voice willing to put this out there for us please knock on my door.

[stone-UK]

Hi

Have a read.

Spoon Therapy.

healthunlocked.com/blf/post...

Another one to help.

healthunlocked.com/blf/post...

[SORRELHIPPO]

Firstly, call it "fatigue" sounds more medical. I have this from another illness, getting it through to others is very difficullt, I got it through to my husband, when he had "man flu" and I said I feel like that all the time. Looks as though you have had loads of good advice already.

[corriena]

Try the blf helpline i know thear are lots of leaflets avalable but i dont know if thear are any on fatigue, exhaustion, but definitely worth a ask and its free.

[Bella395]

As a carer I don’t have any definite answers for you because every situation is different. Sometimes carers can struggle to empathise with their caree. This can be due to a number of factors, including illness, stress and the sheer unending responsibility of looking after another person. In your son’s case maybe he doesn’t feel well himself due to his obesity.

A leaflet might not be much use. Could you seek some professional help to discuss ways of helping you both? Would your son be willing to deal with his own health issues? Does he need a break from caring? Could you get some additional help in the house to make your lives easier? Maybe decluttering so that things are easily accessible? There are lots of small ways that can make things better for you both but you need to communicate and support each other.

It might not be much help to you but I can say that being a carer is really hard work and stressful. Nobody likes to see someone they care about suffer. We carers frequently don’t have any time or ability to care for ourselves. Studies have demonstrated that there is a high incidence of ill health, physical and mental in carers.

[Hidden in reply to Bella395]

Hi Bella

I do understand about being a carer as I cared for my mum for the last few years of her life. Triple bypass followed by lung cancer. Although I call my son my carer he has very little to do for me as I have carers coming in. It is just little things like poking through the cupboard to find a particular tin or bottle which of course takes him seconds but completely exhausts me. He simply cannot comprehend which I don't think I would have if I hadn't ended up in this situation. It seems impossible to explain.

[Bella395 in reply to Hidden]

It is sad that he can’t respond in the way you want him to. Perhaps it is best to try to accept it and dismiss it from your mind if you can. Some people do not have the ability to empathise. Others simply don’t want to.

[Ergendl]

Ask your son to try going up and down the stairs 10 times breathing through a straw. That might give him a better idea.

[jackdup]

I read somewhere that at one of the hospitals they make the paramedics breath only through a straw and have to go up and down stairs so they get an idea of how difficult it is to breath for someone with a lung condition. It seems to me they also had to carry a certain amount of weight.

[Hidden in reply to jackdup]

I will try and get him to give the straw breathing a go. Mind you I think in order to really understand the fatigue you'd have to just breath through a straw for at least a week. Can't imagine anyone doing that voluntarily. I know I wouldn't. 😉

[Phil40]

I care for my Mum and find it hard to understand how anyone could not see how exhausting mentally and physically it can be living with COPD. Sorry to read about your experiences of such a lack of empathy. Doesn't sound like the term 'carer' is appropriate. Regards