So tired

[Olivia-Dre-123]

I am so tired of this COPD I am not coping well at all and on top of it all I am not sleeping at all I am exhausted and my eyes look as though I have been punched they are so black I am about to give up on everthing at the moment as It is taking it's toll on me at the moment especially at night time my breathing is bad and the noises from me are scary wheazing and a cracking I don't even know at what stage I am at as the Dr's don't tell me I need asvice please I am desperate at this moment in time ...thanx for listening to me rant on it means alot x

[Mellywelly]

Wow, I thought you were describing me then for a minute. You sound like the exact mirror image of me. I am going back to doctors today as my breathing has taken a nosedive. Trying trelegy since 25th nov but had 3 viruses and the last one was the worst. If your anything like me, your exhausted all the time, tearful doesn't even come close, Xmas was a washout which then makes you feel guilty, sick of explaining yourself over and over to any doctor. Can't really tell if my meds are working yet but if someone asked I'd say a big fat no. No energy. My nurse said you have to use it or lose it. You put yourself in our shoes. So rant away chook as I know exactly what your going through. There have been times when I thought I can't do this anymore, but I have 2 dogs to look after and that's the only thing that keeps me going. Please don't give up and keep posting here. Everyone is so lovely 😉

[sassy59]

Don’t give up Olivia-Dre, things can and will get better. You need to speak with your doctor today, insist upon it and tell him exactly what’s going on. Something needs to change and you need help. This time of year isn’t great for those with lung issues but keep talking to us on this amazing forum if you can.

Wishing you better days ahead. Xxxx

[Biker88]

If you are breathless ask your GP for a low dose Oramorph this helps calm the breathing muscles. If you lay flat at night try propping yourself up as this can help. Don’t worry about stages I have no idea what stage I’m at, but I am on ambulatory oxygen now. I still drive and go out and take a mobility scooter with me so I can get about once I park the car. Try and get on a pulmonary rehab course where the physio gives lot of useful information and tips on how to live with COPD. Don’t think I can’t do things think how can I do things instead.

[Yvonneh1234 in reply to Biker88]

I’ve never heard of this oramorph but I’ve saved your post for future reference as I often get muscle aches around my chest when my copd flares up and hoping this might help if I go to my gp great advice from Biker88 😊 I was the same when I was diagnosed I put on weight wouldn’t do things as I got out of breath a lot went into quite a depressed state just over 3 years on I’m on trelegy inhaler lost 2 and a half stone ( still got just over a stone to go) and try do bit of exercise daily even if I get a little out of breath I don’t know what stage my copd emphysema is either I no with me it’s worst in the winter and again when it’s humid aswell Olivia-Dre think of the positive things you can do not what you can’t and always think of something that will make you smile each day 😊 it’s hard when your not feeling yourself I know but you will get there one day at a time tomorrow is always anew day 😊 see your gp and explain that you need help some great advice from members you will get there let us no how you get on

All the best Yvonne xx

[B0xermad in reply to Biker88]

Fantastic advice

[Lymolass in reply to Biker88]

Can you tell me what make/model of scooter/recommend? Am thinking of getting one but it’s a minefield of choice, Needs to go in car, like yours. Thanks

[Biker88 in reply to Lymolass]

Yes the choice is a minefield, I have two scooters a road legal class 3 and a small class 2 pavement one, I have brought a wheelchair access vehicle(WAV) so I just have to lower a ramp and drive the scooter in. I would recommend going to a shop such as CareCo and view and discuss a range of scooters. Even a lightweight folding one can be a real pain to put in a hatchback, easier in an estate back. With an estate you can use ramps, another choice is fitting a hoist into a hatchback so this will do all the lifting for you.

[Ergendl]

The replies above are all good suggestions.

Also, see if there's s support group or singing for lung health group in your area. You can search for one on this page asthmaandlung.org.uk/groups...

[Alberta56]

So sorry you and Melly are both in this sad state. I think all you can do is take some of the suggestions on this page to your doctor and request action. Some of us have been in the same state and come out the other side, but at the time illnesses seem to go on for ever. I shouldn't worry too much about lack of sleep- humans can manage if needs be with remarkably little. That said perhaps your doctor would give you a short course of sleeping tabs. Let us know how you get on. Hope things start to mend soon. xxx

[Minsha]

hi Olivia

So sorry that you are struggling so much at this time.

Your staying awake, listening to the sounds of your breathing crackling and wheezing is exactly what I do !! It’s horrible but I had to train my mind to just think it’s the norm .. Tik tok helps me keep my mind off it till I knock out .. through boredom mostly!! lol

I have PF and it does get me down every few days .. I’m 52 now and do worry for the future but I also remind myself constantly to fight . Go back to the doctors , keep telling them .. don’t suffer in silence.

Sleep in the day if it’s any easier .. I used to hate that but I really need to do that now otherwise I wouldn’t be able to do anything else during the day or night!

[Turnipgirl in reply to Minsha]

There's a lady who used to come to swimming and has PF and is only 52 as well!

Nowadays she is physically unable to come for a swim!

Yet another example of life being unfair!

[Minsha in reply to Turnipgirl]

Yes, unfortunately we all just need to adjust every time there appears to be a decline .. it’s hard though facing the new reality.. who knew life was so fragile.

Any way chin up .. Happy new year everyone !

[Turnipgirl in reply to Minsha]

Happy new year to you as well!

[peege]

First I would see another doctor at your surgery the one you're seeing is a chocolate teapot.Please give the helpline a call for advice on how to get help going forward. They are excellent in every way. 0300 222 5800 office hours (not sure when they reopen after the xmas/new year break). Thinking of you

[Turnipgirl in reply to peege]

Thing is if you aren't happy with what you're getting told by one GP it's your right to ask to see a colleague for a second opinion!

[pepparuby1]

Olivia I hear you!!! Awful disease and not knowing what stage leaves one in perhaps denial as I was. Last January I had so many chest infections then Covid and was put on different meds but then I said surely I should be seeing a consultant by now? The dr referred me to pulmonary rehab team - it took six months to be put on PR best thing o did as they told me I need oxygen on exertion - I was making myself worse by learning about SATS and seeing how dangerously low they were. A shock going on oxygen but actually that helps me stay fitter although just coming out of another chest infection. So my question is surely there’s a respiratory team that you can be referred to? I got CT can showing I had severe emphysema ( another shock) and I was giving lung function tests - the consultant of the team had suggested lung volume reduction ( scary) but I’m going to do a clinical trial next month that may help with inflammation ( where the wheezing come from)

Ask if you can be referred

[Turnipgirl in reply to pepparuby1]

Happy new year to you and the kitties!

Baby wishes you all a happier 2025 and is great and still getting her own way!

[pepparuby1 in reply to Turnipgirl]

Happy New Year Catgirl and Baby

[Tia4209 in reply to pepparuby1]

You are now and always have been so positive and inspiring.

[Ern007]

Hi Olivia-Dre-123 - I often feel washed out, Copd and other issues take there toll. I am a poor sleeper and need sleeping pills or I woud be a Zombie.

You say you "can't sleep" in all honestly I think you may want to talk to your GP about getting something to help you sleep.. Sleeping pills are not a cure all, but they sure help.

Reading your post again " noises from me are scary wheazing and a cracking" That could mean a chest infection and you may needs some AB and even a short course of Pred.

Have you got a rescue pack?

In short don't suffer in silence, try and get some help.

[Olivia-Dre-123 in reply to Ern007]

I think I may need to see the Dr and our Dr does not give rescue packs we have been told to phone up and when u have been see by someone only then will one be issued and thank u for the advice x

[Yvonneh1234 in reply to Olivia-Dre-123]

Same they say that to me it’s ridiculous really xxx

[Celticsalt]

I'm so sorry to hear your situation. Im 62 have had bronchiectasis for 20 years. I gave up on conventional medicine last lot of antibiotics took six weeks to clear. I use hemp oil, smoothies with spinach, berries garlic ,ginger, fenugreek, flax, seeds anything anti inflammatory, it really helps , just recovering from a 3 week bout of illness left me with chest infection. Oregano in tea helps both what clearcleared it up finally was 2 cups boiled water small onion and 3cloves of garlic, chop and leave to infuse for an hhour. Add ginger or cinnamon and honey been taking half a cup 3 times a day , chest infection is gone, Mullein is really great for thinning phlegm and expelling it. For sleep, I'm using half a teaspoon of ashwagandha in my nightime chamomile tea, , knocks me right out.

I wasn't sure whether to put all this out there. It's all trial and error what suits me might not work for others.

[Jack70 in reply to Celticsalt]

I’m with you . Antibiotics are the biggest cause of I’ll health they destroy your gut which lead to all sorts of health issues like anxiety insomnia and fatigue, muscle wasting that doctors and big pharmaceutical companies will never admit to and then your left to rot. Everybody blames the copd for all other health issues when it’s actually the poison the doctor is giving us.

[Celticsalt in reply to Jack70]

exactly what I found, buying gut bacteria supplements, what worked best in the end was sauerkraut, our kitchen holds so many amazing medicines we need to re learn how to use them like our ancestors did. Nettle is a great anti inflammatory plus loaded with nutrients

[Jack70 in reply to Celticsalt]

So ironic that I ordered some Celtic sea salt yesterday

[islande]

I hope you feel better soon.have you seen gp to rule out chest infection and abs pred

[PaperQueen]

You poor girl, both you and Mellywelly. I think we have all been there at some point, but please know that you will come out the other side. Not sleeping is a killer, how can your body repair itself if you get no rest? I know how much worse I feel when I can't sleep. Maybe ask your GP for something to help you with that? Lack of sleep affects your mood as well as your physical health and I'm sure you would not feel so desperate if you were properly rested. There have been many good suggestions from others, but please don't give up or despair. Lots of love, get well soon xx

[Otto11]

Hi I’m so sorry to hear you are feeling so low. Poor sleep is dreadful. I had insomnia for many years so learnt various methods to help relax & move your thoughts away from in your case the noises of your breathing. I use an App called Calm which I have on my I pad. It has lots of sleep stories or sounds of gentle rain etc I must admit Harry Styles reading a sleep story works best for me. Lack of sleep causes us to feel very low in mood & weepy You need sleep so try to speak with a GP or give Asthma & Lung UK a call they have an advice line. Please don’t give up. I hope you find some help soon.

[Chinadoll81]

I know exactly how you are feeling Olivia. Since before Christmas last year when hospital here sent me home as I had the most scary cough I've ever had but, apart from nebulising, no other treatment was forthcoming . Was so ill Sent a sputum test into lab through my medical practice. It came back as having a very bad bacterial infection. Oh my

Was I ill!!! Couldn't do anything for myself. Then stats were so low I was admitted to the cottage hospital next door to practice. I'm told I was there for a week. I was TOLD as I have no recollection. I pulled through TG but have been worse since and one which is causing me so much distress is the lack of refreshing sleep. I sleep because I take a tablet, but now I'm breathing through my mouth which

Is really horrible and I wake up exhausted. Also coping with a tummy problem. Yep!!!! With you all the way. Have never been offered a BPap machine which I believe would help providing oxygen at night. Sufferers together

Blessings and love xxxxxx

[MoyB]

I hit rock bottom a few years ago and thought life as I knew it had come to an end. However, thanks to the info I gained from others on here, plus from the Breathe Easy group I attend, I was able to realise that there were things I could still manage. Gradually, the depression lifted and I started to look forward to waking up in the morning again!

Some medication changes made a huge difference. If you have not been referred to a consultant, please ask to be referred as a matter of urgency. If you have the funds, perhaps ask for a a private referral. Your GP is not up to the mark by the sound of it so definitely ask for a second opinion. My own GP was a lovely person who was doing the best he could, but he didn't seem to realise that he was lacking the knowledge to look after my respiratory needs. A private referral to a consultant made a huge difference as he transferred me to his NHS list and got all sorts of tests done.

Pulmonary rehab helped considerably and knowing how others cope also helped.

Once you're at the bottom, the only way is up! Time to start climbing.

I wish you all the best - you face a challenge but with the right support, you will get there!

The New Year is a good time to start the change. Best wishes for 2025.

xx Moy

[Yvonneh1234]

some great advice Moy xx😊