regaining lost ground

[claque]

Good day to you all

I am a 68 yr young male suffering with severe emphysema, bronchiestasis, Af and congestive heart failure

There is a saying we use "use it or lose it" Well after 12 months of 2 x pneumonia I x double pneumonia ,a constant infection and 4 x lengthy hospitalisations I fear that I have lost it I have LTOT 24/7 and 12 months ago could cope reasonably well . I was mobile (after a fashion) and I got exercise regularly. Now after several episodes of immobility and even being bedbound I can hardly stand some days . The slightest exertion or even movement has me gasping for breath I am becoming more and more dependent on my wife and ,although she does not complain,I can see the strain showing on her face . I need to, firstly, get some improvement in myself so I can relieve the stress and become less reliant on my wife ,and secondly, to improve our enjoyment and quality of life

Sorry to have rambled on at such length but I am sure that there several others out there who have been there before me and if anyone has any tips on how to get it back or similar experiences I would love to hear them

Regards Chris

[Damon1864 Volunteer]

Hi and welcome, my advice is just take things one step at a time and build up gradually. You will be surprised how soon you start feeling better, please let us know how you get on. Take care😊 Bernadette xx

[claque in reply to Damon1864]

Hi Bernadette

Thanks for your response, My problem is that as soon as I start feeling better another infection comes along and knocks me for six. It always seems to be one step forward and two steps back It would be good to have a sustained period of "good" healthso I could make a bit of progress

Chris

[Damon1864 Volunteer in reply to claque]

Try as suggested pulmonary rehab, they may be able to help. Also drink plenty and eat as healthy as you can it all helps. Also have a word with your GP or nurse see if they have any helpful suggestions. Let us know how you get on.😊 Bernadette xx

[Tansycat1]

Hi claque, Poor you, I don't have any answers for you, I am not in your position, but you have made headway, big time, simply by writing down how you feel. I have only been on here a few times, but these lovely people will be here to support you. If writing helps get it off your chest,(sorry re pun) then write. each post will give you a sense of achievement, and it sounds to me like you have had all the stuffing knocked out of you and you need to re build your confidence again, writing it down will do that, sending you a big kiss, and sending your wife a massive kiss too. xxx

[claque in reply to Tansycat1]

Hi tansycat Thanks for your support.

I certainly do seem to have lost my confidence and confidence is something I have never been short of until now. I think it will only return with my ability to do things for myself and to stop being so reliant on my wife.

[corriena]

May i suggest pulmonary rehab. I know you dont think you are fit enough at the moment but i was in a very similar position when i first went. I realy dident think i would be able to cope with exercise as even standing was a strain. But i was encouraged to go by a pulmanery nurse who told me she could put my life back on track. Ridiculous i thought but i was desperate n my own with a young child i had to do something. I went along and was taken very gently on my way through there exercise program. It was scary at times but the staff were lovely and so suportive. I learnt alot on my six week cause not just the exercise but good management tools of my condition she was right she did put my life back on track. With what i lernt i feel less scared of my illness and more able to recognise when im getting worse but also how to put myself back on track after a setback. Good luck with your recovery

[claque in reply to corriena]

Hi corriena

Thanks for your response

I have been to pulmonary rehab once before and found it very useful but my respiratory

team aren't keen on a second one as they say I have already learnt the theory side of it all and I would be wasting my time. I have got the BLF exercise bits and pieces and find them very useful and I go to a local exercise class Unfortunately the class is too short and only once a fortnight I have looked at local gyms but there doesn't seem to be any offering the type of exercising that I need. I will persevere with what I am doing until something better comes along and I will keep my fingers crossed that I can stay away from infection long enough to be able to make some progress.

[Tansycat1]

That sounds like a wonderful opportunity, and I am so happy for you, regaining your confidence is just the start for you. Well done on grasping a tool that I feel will work well for you.

[Ergendl]

In the meantime, try putting on some music you like and dancing in your chair. Even moving your arms and legs a bit more occasionally will help to keep the muscles a bit fitter. All the best.

[claque in reply to Ergendl]

hi Sounds like a good idea A bit of Led Zeppelin, Pink Floyd ,The Rolling Stones and a bit of country Neighbours probably won't like but it sounds good to me !

[Ergendl in reply to claque]

Sounds great to me. I'll get out the LPs.

[barbs47]

Hi claque may I suggest you get the BLF exercise DVD which is free. It’s shows numerous exercises you can do sitting on a chair. They also have an exercise handbook £5 with free postage. This shows all the exercises on the DVD but you could just pick the exercises you can manage without going all through the DVD. It is a great way to start and you can step it up as you get stronger and fitter. I can highly recommend both. Barbs x

[claque]

Hi Redsox

I was diagnosed 20 years ago with mild emphysema I am now severe with lung function of 20% I have been on O2 24/7 for nearly two years now.

At first I managed quite easily but since retiring (big mistake) things have taken a turn for the worse My job involved a lot of physical activity and must have been good for me

Since retirement ,although still active , I have found it harder to manage and the constant round of infections and pneumonia etc. leaves you very weakened and a lot less able . It seems almost impossible to get back to anywhere near the previous level A sustained infection free period would certainly help

regards

Chris

[Hidden in reply to claque]

I found that since taking azithromycin 3 days a week as prescribed by consultant a couple of years ago, I stopped having exacerbations which made an immense difference to my well being. I'm guessing that's the medication you are taking 3 days a week too?

[claque in reply to Hidden]

Hi Annastatia

That's exactly what I have been prescribed . Azithromycin 3 days a week. Hopefully it will have the same effect on me. It will give me the opportunity to get a bit fitter and stronger instead of lying around on a hospital bed There seem to be a few on here on fulltime a/biotics and most seem to recommend it That's quite encouraging

[Hidden in reply to claque]

I do hope it will be as beneficial to you as it is to me and also many others on here. It's good to read you are keen to maintain a good fitness level as Im sorry to say I haven't. I get breathless very easily and spend most of my time sitting on my butt feeling a bit sorry for myself. However I have learnt through this forum that exercise is essential for fitness and beneficial so I need to shake myself out of the doldrums . Good luck to you .....onwards and upwards lol 🏃🏻

[claque in reply to Hidden]

I hope so too My fitness is not good I also get very breathless very easily I know how easy it is to sit around but it is definitely a downward vicious spiral and the only way to break it is to exercise no matter how painful. I am told it gets easier ( they had better be right) I'll let you know

[Hidden in reply to claque]

Go for it claque......you can do it. 🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻

[claque in reply to Hidden]

I will go for it . you go for it too !!

[Hidden in reply to claque]

Deal. ⛹🏿⛹🏿⛹🏿⛹🏿⛹🏿⛹🏿⛹🏿⛹🏿⛹🏿

[claque in reply to Hidden]

You stick to it. I will be checking

[Hidden in reply to claque]

Lol 💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻

[Palm-Tree-11]

Hi Claque, have you been refered to a consultant? Also, I was chatting to a friend who said she used to have lots of infections untill she was put on an antibiotic for 3 days a week-for life, and was keeping infection free since, good luck, I hope you feel stronger soon

[claque in reply to Palm-Tree-11]

Hi Palm -Tree

I have been seeing various consultants for many years It is only recently that I have been put on long term antibiotics Same as your friend 3 days a week Unfortunately I was carrying an infection anyway so had to stop them whilst I was on different antibiotics. I am due to restart them tomorrow and hoping So fingers cross

[Palm-Tree-11]

Hope the antibiotics do their thing for you quickly claque, what do you think about vitamins and suppliments? I've heard cq10 is a good one, also some form of high vit c, I've got both ordered for myself.

[claque in reply to Palm-Tree-11]

Hi Palm-Tree

I hope they do their thing quickly as well. As for supplements and vitamins I know very little really. I have always had a sensible healthy diet and assumed that it would be enough but I know as you get older you may need something extra. That would be for a future discussion with my Gp(if I could ever get to see him)

[Hidden]

Hi RedSox.....I take Azithromycin every Mon We'd and Fri throughout the year and even if I am taking Prednisolone which for me is rare . My consultant told me to take the Azithromycin as well as the Prednisolone...even though the pharmacist tells me not to . I just smile and say thankyou and carry doing as consultant said. I have never had any side effects. You should of course always check with your Dr.

[Hidden]

Lol thankyou.....I do. 😀😀😀