As a longterm sufferer from Emphysema I find the need to keep stopping and resting to get my breath back (even after slight exertion), the most annoying thing. However, if I don't I have to rest for longer to get my sats. up. This really is a trying disease!
So annoying: As a longterm sufferer... - Lung Conditions C...
So annoying
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martin1945
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16 Replies
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So sorry you are having this difficulty martin, I wonder if you need your oxygen litres per min prescription reassessed if that might help with keeping your sats up.
Its good you keep trying even if you have to keep stopping and resting to recover breath, its when we stop keep trying that deterioration happens more quickly (at least in my own experience that is).
Keep doing a little and resting as you need to and I hope something can be achieved to help you keep the sats up.
Best wishes BC
Hi martin, sorry to hear you are having a bit of a rough time but don't give in keep doing a bit when you can. Yes i am the same as most of us and get frustrated and angry on bad days, but this only drives me to try and control things. As BC says maybe you should have your O2 rates checked. What is always on my mind and i do believe it " I have COPD (E) but COPD does not have me". I am stage IV but will not give in to it. Cheers. Dave from the LoS.
Yes - my husband spends his life in total frustration! Sorry I cant add any positive advise - but you have no option!! Take care, stay positive and try not to get frustrated TAD xx
Hi Martin, I am suffering with my breathing too at the moment, think I will get my meds checked out, I can sympathise with you, as you say its a dreadful illness, this time of year is always worse with the cold and damp, it might be worth you getting a check up with your respiratory team or GP.
Take care and I hope you feel better soon xx
Best Wishes Jude
Hi All ,I too am having a bad day, Went for a hospital appointment with Partner his appointment, struggled to and from carpark, Not on oxygen yet and cannot see the point as it only protects your organs, and wont enable me to walk any longer, and as for portable oxygen, could hardly carry my bag today,never mind any thing else, never mind tomorrow is another day, would be lovely to go for a nice walk on a day like to day, Dream on ,X
Understand exactly how you all feel. I am now on oxygen as and when and apart from protecting my other organs I do find it gets my sats up quicker than without it. I just keep persevering, I am on the transplant list so need all the strenght I can get so go to pulmonary rehab to push myself and hopefully make exercising easier as time goes on. We all have to live for today and do our best to make life easier for tomorrow. SueE
Sue, I hope you get your transplant. I had mine 14 months ago and have never looked back. All the best.
Thanks for that. Any advise/information would be much appreciated. How long were you on the list? How bad were you before? Hope you don't mind all the questions but I would really love to hear as much as possible. SueE
My breathing was bad but not terrible. I could still walk about and scored about 27% of predicted. However, my ct scan showed what the doc described as the worst lungs he'd ever seen walking about. I only waited 6 weeks because my blood group is uncommon. If you need any more just ask.
Lung problems are especially trying. I get frustrated because every other part of my body works OK but I get breathless doing a minimum amount of exertion. I can only get about with a mobility scooter. Frustrating when you keep having to ask for help for tasks that used to be so simple and easy. But we soldier on. Since being forced to retire from work I have been studying for a degree, just my dissertation to do, which I didn't have time for while working. I am a regular visitor to museums around London all of which seem to be very disabled friendly. I am becoming a regular know it all for useless information but I am great to have in your pub quiz team.
Try to get on the rehab course it is really helpful.
Just keep on breathing its still a great world!
Hello Morrid I am thinking of going to London with a friend (when I am up to a full day out)which of the london museums did you find most interesting? I was thinking of going to any that are near the coach station any you would recommend. i have used a wheel chair an a mobility scooter from time to time when I have been really bad. Generally I try to keep walking even if it is at a slow crawl with no talking!
Where next one asks. best wishes Irene
Hi Irene. Where are you coming from?. The main coach station in London is Victoria and the best place for museums is South Kensington. The Science, Natural History and Victoria and Albert museums are next door to each other. According to the Transport for London (tfl.gov.uk) it is a 34 minute walk. May be best by scooter. Not all underground stations are disabled friendly (work in progress). The science museum is fully accessible and I think the Natural History is too. V&A may have some parts not accessible due to age of building. Look up on websites. All museums are free to get in although there are lots of requests for donations. Some of the special exhibitions charge (discount for concessions). I was at science on Thursday to see the Hadron Collider exhibition £10/7.
Good day out but food in museum is a total rip off so take your own.
Hi hopetorun, the V&A has lots to see in one building and the food in the resturant is delicious, really tasty resembling homemade. It might be a bit steep but you eat in beautiful surroundings.
Agree the food at Natural History isnt very good. Dont know about the Science Museum.
Unless you're on a ver tight budget you could get a cab from the coach station? Sharing cost with your friend and saving you energy.
Martin, build a little extra time into you plan to allow for stops. Take in the scenery or watch the world go by. Oxygen would definitely help, I could walk 3 times as far without resting when I used it. Also, if you haven't considered transplant then get a referral and take a look. It gives you your life back, even if only for a while. Good luck and don't let the bugger wear you down.
Hi Martin of all the things that contribute positively to my life excepting the meds it would be my community matron, Clare in my case and she has come to be a family friend to my wife Ann and I. Her warm and cheery approach on even the darkest of days always leaves me brighter, up and ready to deal with whatever the days may bring. Ann tells me it is the respiratory clinic which can recommend this. I urge you to seek their help in this. If successful you'll never regret it.
In any event take care and be lucky,
Chris
keep going as I have the same problem. even failed to go to the upstairs bathroom. be carefull of the cold as it is harder to breath I find in the cold. put some cold water in the fridge and take sips of that in the morning it helps to get rid of the rubbish in the lungs. hope this helps
