Support to move forward

[Sunflower48]

Frustrated.l have copd recently diagnozed.lm waiting for p.rehab but theres a waiting list till MAYBE this year.l was so positive but when theres so little support on how to help myself how can l stay positive?

[mrsmummy]

There are numerous YouTube videos which demonstrate pulmonary exercises and the other aspect of PR is the knowledge and tips which are shared. Many of those you can pick up on here. If you have any specific queries I am sure members will try to help. Welcome to the forum.

[Sunflower48 in reply to mrsmummy]

Thank you mrs mummy.x

[Margie2553]

Waiting for it myself for two months and i really need it not coping very well now how you feel x

[Sunflower48 in reply to Margie2553]

Thank margie.lts so annoying when lm trying to help myself but cant move forward.

[Donna1962]

I start mine next week looking forward to it cos I have given up since I found out I have copd and emphysema I have lost alot of weight am down to 6 stone

[O2Trees in reply to Donna1962]

Donna, an important aspect of copd self management is to try to keep your weight up. I don't know how tall you are but suspect that 6 stone is much too low. So don't give up on eating - if you can squeeze in an extra meal in the day that's a way to keep eating. Small meals but often as possible. Your weight should be at least 21 BMI, more if you can manage it.

[Donna1962 in reply to O2Trees]

I am five foot Four it's hard cos I just don't feel like eating some days I eat lots then other days hardly nothing

[O2Trees in reply to Donna1962]

Are there treat foods you could save for the days when you don't want to eat anything Donna? Icecream for instance? Could you get a referral to a dietician? (Oh, see Badbessie has just suggested that - well two heads better than one!) Dieticians are good at helping you work out what foods to eat, when/how to eat them.

[Sunflower48 in reply to Donna1962]

Oh donna my lovely.you really shouldnt have to have waited so long.its so bad.good luck tommorrow.lm sure you will find it very helpfull.x

[O2Trees]

Hi Sunflower, if you've recently had a chest infection that can be a way to get the date brought forward. It worked for a friend of mine down here in Kent. Welcome to the forum

[Sunflower48 in reply to O2Trees]

Thanks for your reply trees o2.

[peege]

If there are no other health reasons why you shouldn't do a little gentle exercise then there's a free DVD you can get from the British Lung Foundation if you're in the UK (it's a charity so we can't expect them to pay postage abroad).

Some of the exercises are very simple to do & you can build up slowly IE sit to stand, walking on the spot. If you aren't mobile the exercises can be adjusted to sitting in a chair.

Check out the BLF shop. P

[Sunflower48]

Thanks peege.l rang them and they are sending me the dvd and leafletes which l hope will be very useful.thanks for your lovely reply.suzy.x

[Badbessie in reply to Sunflower48]

Sunflower ask your GP to refer you to a Dietitian. Diet is very important.

[2greys]

It makes my blood boil to hear the stories of long waits for PR. I know I might be, a little, biased on the subject, but, PR is essentially as important as all the inhalers and pills put together. Learning to breath correctly and exercise are a must if you are going to take back control of one's life. I know COPD affects people in different ways but being fit and having a strong immune system are essential to all.

Diet is just as important, COPD sufferers can need up to 10 times the amount of energy than a healthy person, just to breath.

Knowing how to use your inhalers correctly is essential too, to maximise the best benefit from them.

Relaxation is another important "must learn", you have to be able to switch off.

All the above is taught in rehab. To just give people an inhaler and chuck them out on the streets to get on with it, on their own, is just cruel to say the least.

When I did my PR I was well up to speed with the theory of it, having educated myself beforehand. There were three people there, during that time, that this wicked disease had totally destroyed emotionally, it had destroyed there lives, their self confidence, they were just shadows of their former selves, too frightened to say boo to a mouse. In my opinion they had been left far too long before starting their PR. The therapists do a wonderful job but the psychological damage had been done, they had their work cut out trying to give confidence first to these unfortunate few, just to get them to march on the spot without breaking out into tears.

Having COPD is traumatic, it is a BIG event in ones life, it is life changing and just like having a child, "once you've got, you've always got". It is something that will be at the front of your mind most of the time, but you get used to it, the same as having to hold the said child's hand you get used to it. You also get use to the healthy not "getting it" and learn to not dwell on the fact that they just don't understand.

[Hidden in reply to 2greys]

Excellent reply, very well put

[Badbessie]

Well said 2 Greys, I am yet another waiting on pulmonary rehabilitation. I have made the changes necessary. Luckily I was referred to a dietitian but the rest of it was find out for myself. I have spoken to people who are too frightened to go out of the house let alone exercise. In reality the NHS are making the problem worse, adding extra costs to treatment by not acting quickly to educate and rehabilitate people with Copd.

[Pam1952]

Hello Suzy and a warm welcome to the group. I'm so pleased that you found the site as early as you did, as knowledge is the key to dealing with this condition successfully. Push for what you need.....you're entitled to quality care.

I was diagnosed with COPD 8 years ago and spent 7 of those years clueless! Things have changed dramatically for me since I found this site, as I now feel as though I have control.

Good luck Suzy, and I hope that you get on that PR course soon.

Take care. Pam XXX

[Toci in reply to Pam1952]

I agree about this site, Three cheers for the BLF!

[Samjeff]

I agree if we share what bits we learn we can help each other it's so exhausting digging around for info to help ourselves. Think I read it here but someone asked for a pediatric concentrator they only last an hour at a time but that's sufficient for a walk round the garden that's about how long my energy would last for anyway. I have already appreciated the info on concentrators to buy and insurance for holidays so thankyou once again. Sam

[Dedalus]

Hello and welcome Sunflower

[Clamdigger]

I paid for a visit with the Osteopath and she gave me some exercise's They do know a lot about lung function... Here in Canada I live in NS long time waiting list here...

[Buzzytruk]

Hi......agreed .....there's a long waiting list for PR....so I am told ,where we live , yet a friend in the next town has been twice...... Am beginning to think it depends on the surgery you are at. I feel the resp nurses at our surgery who are left to sort everything out re treatments etc .are totally apathetic. very pleasant women but no umph.

Sorry this is a late reply......found it checking who lived where ,. You are not far from me .

Jo.....😁