Hello. I was diagnosed with Emphysema back in 2018 and then in 2019 with COPD. Supposed to have had a yearly review but because of Covid this didn't happen until last month. The COPD has progressed somewhat. Now on 2 Inhalers and Steroids. Does anyone else find that they need help with washing and dressing themselves? Also in the night I start coughing, can't get comfortable so my husband gets me up and I go and sit on the sofa for the rest of the night. Sometimes up at 2, 3 and 4. Also prone to cramps in my legs and ankles and sometimes my legs ache to the point where it's hard to get up from a chair or walk very far.
Anyone else have the above issues?
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Soxthefox
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Hi and welcome. I have stage 4 emphysema and have daily carers from an agency to help with personal care. I used to sleep on the settee as I couldn't get comfortable in our bed but I now have an electric bed in the spare room which has helped a lot by being able to adjust the head height.
You can ask for an assessment by social services for social care but that is means tested. If you are unlikely to meet their criteria you can arrange your own private care and self fund. PIP or Attendance Allowance are designed to go towards payment for this service. Social Services will provide a list of local agencies but won't recommend. You can also view inspection reports by the CQC on line of all agencies in your area which can be helpful.
As for your leg problems I would have a chat with your nurse or GP. Best wishes.
Hello. Thank you for your prompt response and the information contained therein. Very helpful indeed. Do you not suffer from leg fatigue?Kindest regards.
Okay. Thank you. I get cramps in the night too, not every night thank goodness. Not sure what's worse the constant coughing or the cramps. I'll keep you updated. Have had a search for some help and I think at the moment it'll have to be Attendance Allowance although the form looks pretty confusing.
As you are of state pension age it will be Attendance Allowance. You don't need to have someone to attend you to claim it.
It doesn't cover mobility, only care. If you ring up Age UK they will either fill the form in for you over the phone, or I think they can get someone over to see you to fill it in. The other over 60's helplines probably do the same.
If you look online you will find examples and a lot of tips to help complete them too. Good luck.
Take your time with the form even if you get help. Tell them how you are on your worst days, emphasising your problems. Keep a copy of the form when you send it in. Good luck.
Try putting a bar of soap under your bottom sheet where your feet go, it helped me a lot,when I moved to France And told my doctor what I did for cramp, his reply was yes we do that in france also, make sure you take the wrapping of the soap. I am living back in England now and have been doing the bar of soap cure for 16yrs now, before someone ask's I use Imperial Leather.😀
You ought to be eligible for Attendance Allowance, which is not means tested and would help to pay for the help you need. I get leg ache if I've overdone things, though nothing like as bad as yours. I hope someone will be along who can give you some advice
Hi, thank you all for your input. The form is certainly confusing. It says that it's not about the help that you're getting but about the help you need. Am I being thick here? How does anyone know what help they'll need apart from what I'm getting currently. I won't be offended if you tell me that I'm being thick!!!
You have to have needed the help for the previous six months I think. Age UK did my form over the phone and to be honest I was quite surprised when it was granted. I want to keep my independence as long as possible though and pay for care when required from the allowance. Occupational Therapy also arranged for grab bars, commode etc for my home.
If it takes you a long time to do something, or you get really breathless and/ or exhausted doing it then you need help. Some of us are a bit reluctant to admit to ourselves we need help. My old dad used to say 'I can manage, I can manage' when he quite obviously couldn't. I'm my father's daughter.
Good morning all. You're all so kind and helpful, thank you. Am going to look into this today once I wake up fully. This is a brilliant site, not sure how I came across it but am sure glad I did. Please all take care and I'll come back once I've managed to sort a few things out. All the very best to you all.
Hi I have Severe COPD. I was prescribed oxygen during Lockdown as not able to go out my mobility suffered through lack of excercise. My excercise is not the Gym but walking around shopping centres where it is warm if cold outside. I managed to ween myself off needing oxygen 8hrs per day but still have the Concentrator at home.
I use it when bathing and sometimes when dressing if I am having a bad day.
Have you got a Respiratory Team as they are fantastic and can call to your home to check you . They can arrange an oxygen assessment with one of the team at Hospital to check if you require oxygen.
You can ask about The Respiratory Rehab Course as this will teach you how to breathe etc and reduce your breathlessness.
Sorry to read that life is really quite challenging for you.
It certainly sounds as if you could use a review of your condition by a consultant ? You did mention that you had a recent review but didn’t mention who carried that out ?
Has anyone mentioned a trial of Roflumilast to you ? I started it last year and along with every other kind of treatment has made a huge difference. It has to be prescribed by a consultant first off then the GP can take over if it suits you.
Definitely apply for Attendance Allowance. That benefit can be really useful.
Meanwhile here is a checklist I put together of resources you could take a look at to see if you feel they might be worth following up up on. Everyone is an individual and so often people respond differently to different interventions.
One of the best resources for support and education ( apart from here of course ) isblf.org.uk/support-for-you/... They also have a self care management programme that you can work through.
Helpful people here have mentioned the 6-8 week course Pulmonary Rehabilitation which offers education and exercise however this is only available if people’s level of breathlessness has reached a certain level. MRC level 3 I believe ? Do check this out with your GP though. pcrs-uk.org/mrc-dyspnoea-scale
A healthy diet supports a healthy immune system so well worth bearing in mind. Exercise classes can be found locally and is highly recommended. Check out availability with you local social prescriber at the GP surgery or your local authority (council ) wellbeing team.
Ask your GP for a care plan - worth asking for but rare as hen’s teeth.Learn how to spot symptoms of a flare up /exacerbation beflareaware.com/
Broadly the fitter you are ( cardio vascular and strength and resistance ), the fewer infections you have then the slower you will deteriorate. There are other resources to eg Hot Clinics, Acute respiratory hubs coming in but you have enough to be dealing with for now.
I was diagnosed 20 years ago but probably started with symptoms 27 years ago.
Go well.
Pauline
Hello Soxthefox, I'm 62 and I have similar problems with my emphysema, I take Trimbow and use salamol, carbocistein and have regular chest infections, in fact I'm taking antibiotics and steroids for a chest infection now, I need to use a stairlift most of the time, now live with family because I was struggling to manage so badly, so sort of lost some independence, some days having a wash wears me out like doing the cross country run used to when I was at school years ago, getting dressed can be a real challenge as well, sleep can be certainly be a problem , I used to sleep on my settee at home, now it's a case finding a comfy position in bed more often than not that will be propped up, I noticed that sleeping on my settee was causing swelling in my ankles, cramps yes, coughing yes, worried about getting to the bathroom quick enough sometimes, can't get out and about like I really would like to, which really annoys me.
All I would suggest is to take your time when doing tasks, it takes as long as you need, don't try and do too much at once, have a look at some breathing exercises, experiment with sleeping positions, watch your diet because that does matter as I have found, it's hard when it comes to advice, we all are so different with our illnesses, I hope you get some good tips on here, this is a brilliant community, some top people on here...good luck
Good morning 2009 went blind in left eye got it sorted got eye sight back now / 2013 rusted in to local hospital i ctu tracky in kneck wired up to machine / double new moaner bad asma / bonicals problems ritten off work / copd / put in comma for 12 weeks / i had no help either but what can they do not a lot struggling with life now walking poor i am now 59 had this for 2013 good luck if youo can get help there nothing what can be done my doctor told me this face /face at least some body got the balls to tell me all the best ghoust rider
hello to you i also have emphysema and copd ...in the last 15 months i have had a lobectomy on my right lung due to lung cancer . i am finding it very hard since the op my breathing is compromised on any task i do ...i have had 2 ct scans in 3 months but awaiting results ...i applied for attendance allowance but was refused due to the fact i am still able to do every day tasks.
Re-apply. The criteria is not just if you can do everyday tasks but that you can do them in a timely and safe manner.
If for example you can bathe yourself but it takes you a long time, pain and you have to sit down to recover then this makes you eligible for extra benefits.
Also describe your worst day and make sure it's at least 4 days a week.
I have severe COPD and other diagnoses. Briefly, I had cramps regularly at night and my Statin was responsible. A change in medication to Atorvastatin really helped. It sounds like a very hard time for you and I hope your GP and advice here will be a help. Wishing you well JJxx
Hi. Pleased to hear that you got AA. I'm getting really stressed as I've read that about 58% of claims are rejected. I've asked for a report from my GP and have also got an appointment with Citizens Advice in March for them to help with filling out the form. Fingers crossed. Did you have help with yours?
Hi I have had copd for 15years and getting dressed is a slow process for me. Try to organise yourself so you don't have to get up and down a lot. You need to accept that it will be a slow job don't worry x
Please be aware tyhat if you claim Attendance Allowance - which does NOT include a mobility part - then try disability payment. Not very successful but worth a try. It is also means tested whereas Attendance Allowance is not.
1) REMEMBER ,,,, If you get AA DON't claim Carers Allowance because whatever your Carer gets in renumeration will be taken from your AA simply because CA is means tested.
2) BEWARE .... Let Age Concern fill the form for you - when it asks how far can you walk DON't state 250 yards because they will assume you can do the 250 yards back???? They never ask how far you can walk there and back. I stated 50 yards there AND back (i.e 25 yards each way on my form) which was accepted. Take my tip let Age Concern fill the form for you they know exactly how to do it.
Hiya. Thank you for your post and the information contained therein. I now have an appointment with Age UK this coming Thursday as the one I made with Citizens Advice wasn't for another two weeks and I want to get the form in asap. I've got a letter from my GP to send off with the form. How long does it take you to walk the 25yards each way? I sometimes get breathless just walking from our living room to our kitchen which isn't far. No two days are the same although my nights are a nightmare. I go to sleep and then wake up coughing like there's no tomorrow. I quite often get cramp in my legs just to make matters worse. Most nights I'm up at 2, 3 or 4. No sleep after that, just sit on the sofa for the rest of the night until my partner gets up. He then assits me in and out of the bath as I find bending too much as it restricts my breathing. Trying to cut my toenails is another task, he ends up doing them. I can't afford to get them cut at the Chiropodists. They charge £30 a time.
Forgot to mention - coughing, severe ankle cramp and restless nights waking 3 - 4 times a night - gosh it's exhausting isn't it. All these things are irritating to say the least but remember you are not alone on this site and we are all here to help you don't forget that please
Glad to hear you have an appointment with Age Concern. They really know their stuff. Walking 25 yards one way takes probably 5 or 10 minutes as I have to stop many times due to breathlessness - tell Age Concern this as they will put in the answer to this question for you though if I remember correctly the form does not ask this question of how long it takes.
I get breathless walking from one room to the other even though I have a new inhaler called Trelegy (one puff lasts 24 hours though I still have to use my Ventolin on occasion)
My husband helps me wash my hair - a breathless job is that one. Get some long handled toe nail scissors - about £8 from Easy Living on line.
Let Age Concern ask the questions but remember to answer a bad days symptoms NEVER a good days. If necessary exaggerate a little it really will be in your favour.
Another thing get the AA paid into your account and not your partners as this will be queried unless its a joint account but still have it go into the Bank etc., in your sole name.
Good luck. Would be interested to know the outcome.
Hiya. Thank you so much for responding, you've been most helpful. I don't feel so stressed now. I've made some notes today regarding the questions and will take these with me on Thursday. It'll be what it'll be. Am just keeping everything crossed. I am truly appreciative to one and all and to know that I'm not alone and obviously can post on here at any time. Out of interest, how long did it take for your application to be assessed? I'll definitely let you know how it goes.
Glad you don't feel so stressed now - good to hear.
Application for AA took about a month if memory serves me correctly.
Ask your GP to refer you to the Pulmonary Rehab Team .... they will teach you to exercise gently and safely. They should provide you with an informative book which will also show you breathing exercises .... i.e blow as you go ...which will help when doing the housewok though sadly it won't do it for you. Shame eh!! It's IN through the nose, OUT through the mouth - it works.
I wish you every success with your application and yes please let me know how you get on.
Just relax, they are there to help you not the other way around.
You will always find someone to help you on this site if you feel the need and someday soon you will be helping someone on this site yourself. We have all been there at some stage.
If I can help further please let me know so if I can I will
Good morning one and all. I hope that you are all well and coping with this awful condition? I just wish to give you all an update. I attended an appointment with Age UK on Thursday to go through my application for Attendance Allowance. I was getting so stressed and het up trying to complete the same myself (doesn't take much nowadays). I worked most of my life as a Legal Secretary in a firm of Solicitors in Hastings, East Sussex. You'd think that completing this form would have been a piece of cake for me but no. Anyhow, I met with a lovely lady who went through the form with me step by step. I had made my own notes on how a day and night goes for me, some of it was used to complete the form but the lady still explained every question to me and assisted me in how I should answer each question. So repetitive some of them. I am posting the completed form and documentary evidence that I have on Monday. Unfortunately the copier part of my printer has given up the ghost so I am going to the Library to get the form and evidential documentation photocopied and then will collate them with the form to send off. Am keeping everything crossed. I will get proof of postage though even though the provided envelope is a Freepost one.
One thing the lady at Age UK did say was that I should apply for a Blue Badge. Another form to fill out but she said she will help me do this in a couple of weeks time.
Never in my life have I asked for help or even thought about trying to apply for any benefits. Have always muddled through to make ends meet somehow but things, as we all know have become difficult for most of us so why not try. It's only through a lady that I sold something to recently and whilst talking to her about life in general, informed me that I should try for Attendance Allowance etc. I'd never heard of this benefit before. Am not entitled to DLA or PIP and also have been told by the DWP that because I'm in receipt of the Basic State Pension that this is enough for two people to live that I can't claim Universal Credit. Just so you know my partner is younger than me, not of State Pension age, he's self employed but not had work for an age and he's not claiming any benefits. What is this world coming to?
Anyhow, thank you again to one an all who have been supporting me with my rantings. I'll still keep you updated if that's okay?
You all take care and we are all here for one another. xx
One other thing, does having this disease prevent you from driving? ie does it have to be reported to the DVLA and if so, will one be stopped from driving? Hope this makes sense.
Good evening all. Hope you're all keeping warm and staying safe. I posted off my claim form for Attendance Allowance on Monday this week. Earlier on I received a text from the DWP . Quote " Thank you for your Attendance Allowance claim. You should get a decision letter within 12 weeks. You do not need to contact us unless you have more information."Is this normal? Am stressing again now.
Perfectly normal for DWP. Don't let it worry you Soxthefox we all know that technical jargon is sent to confuse and muddle us well its the same with the English language to these government departments they send out these letters but in some way their words intimidate us all one way or another. Soppy really but we all fall for it don't we?
Wait and see what happens I'm sure all will be okay.
Hello. I think that when you lay down the phlegm and gunge affects the breathing! When I wake up now I find I need to clear it and then I can do more! If i can’t clear it then I get a breathing attack where I’m gasping for breath and breathe that fast I cannot use my puffa and it’s really scary! I don’t have these problems when sat upright!
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