how does one cope with reduced activity?

Am finding myself in a position at the mo where am unable to walk any distance and any activity other than pottering round the house means after hr max on feet have to have rest on bed to ecover. from someone who likes to be active am finding it a little hard to cope with at the mo. Has anyone else that has/is in this position got any tips please b4 i either end up costafied again cause done to much or demented cause can't do anything? please!!!

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give yourself time to recover!!!

is the only advice i can think of.

take things easy and do what you can,

you have just spent 4 weeks in a hospital,

its a long time not to be active even if you hadn't been ill.

hugs

mel xxxxxxxxxxxxx

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Have you been offered any physio. Ive got a community physio due to visit to help me get moving again. Also my hospital has a course designed to help people with respiratory or cardio problems exercise. This is accessed through the physios or respiratory consultant. Might be worth asking if anything like that in your area.

Im also house bound at that moment, my lungs have been playing up and my hearts not happy. So have been put on bed rest by my gp, feet and legs up. Its that or back being costified. So ive opted to be bored at home. Ive sent my husband to the library for a pile of books and have started drawing again. Its fustrating when your body doesnt recover as quick as you want. I think trying different hobbies until you find something that helps pass some time. Best of luck. Sounds like you had a rough time but sure that it wont be long before your feeling better.

Sarah

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Hi Katherine,

Sorry that you are finding yourself in this situation at the moment... I can relate. My life has had to undergo some pretty big changes over the last 18 months, and more so over the last 8 months - both in terms of what I can do with respiratory function and problems with post-ICU myopathy and neuropathy affecting my mobility.

One of the things I really struggle with is the unpredictability of it all - although it is very unlikely that I will ever return to my former level of activity and former job, it is very hard for anyone to predict exactly what level I will return to. I do feel that if someone could tell me, even if it were bad news, I would be more able to deal with it. I do really struggle with my lack of ability to do things, and even now rail against it every day - it is a very difficult adaption process.

Without knowing, for you, how long the reduced activity is going to go on for, and whether it is due to a more acute deterioration that can be treated or whether it is a more long term decline (hopefully the former) it is difficult to suggest things. Physio is a very good strategy if it is a more long-term problem, and something that has really helped me a great deal - I am not sure I would even be walking around the house safely by now if it weren't for my physios. Helping you to very gradually build up your exercise levels is one of the most valuable strategies of all.

Any exercise that you can do is better than no exercise at all. I initially tried to make myself get up every four hours and walk from one end of the ground floor to the other - followed by having to rest on the bed for an hour or so - and then increased it day by day until I now do it every half hour on a good day. I find that now that my myopathy and neuropathy are a little improved I can exercise my muscles more and can get that exhausted, 'had a good work-out' feeling now and again, which helps with sleep.

Make the most of your good days and try to do something more energetic - you will find that you probably don't sleep as well if you are not physically exhausted, if you are used to being energetic and now are not. If you want to exercise, try weights and resistance exercises rather than cardiovascular exercise, as the latter will make you more breathless (obviously seek advice from your doctor or physio before exercising). Lifting tins of food can be helpful - or if you can't manage that, get a 'stress ball' to squeeze on for exercising hand muscles or get hold of some Theraband (basically a big rubber band that you can do resistance work against) - I found, and still find, both useful.

In terms of actually coping with the hiatus in which you can't do as much, I find that it is helpful to have a list of things (either an actual list or a list in your mind) that you can fall back on if you can't do your normal activities. Obviously, the things on your list would depend on what sort of things you like doing normally, and whether your concentration, memory and so on are also affected, as mine were initially when I left hospital, and still are to some extent. Some of the things on my list include: reading - both the sort of fiction and science writing I have always read, and new things such as history, biographies, plays; writing - all sorts - fiction, poetry and science writing; improving my computer and html skills; e-mailing - getting back in touch with old friends, meeting new pen pals; reading blogs and other internetty stuff; puzzles like crosswords, Sudoku and Kakuro; computer games; computer/on-line Scrabble and chess (Facebook is fab for this!); arty crafty type things such as painting, drawing, and a new one for me, jewellery making; researching medical stuff for people - professionally and for friends; learning new skills, eg a language; listening to music, both my old familiar favourites and new music; relaxation exercises; etc... you get the idea.

It was difficult, at first, because I didn't have the energy to do much of even the more gentle stuff, and to be honest, I didn't have much of an inclination, either. I was finding, though, that without things to focus on, I was becoming increasingly... not depressed, that's not the correct word, but... insular, antisocial and demotivated. And of course then there is the dreaded 'Jeremy Kyle trap' - which I fight daily to avoid! To try to break out of this cycle of apathy took a determined effort to actually change my habits.

Now that I have a bit more energy and concentration and I know that things are going to be a bit more long term (hopefully not the case for you) I am also looking to the future and trying to get involved in various internet projects and websites (luckily I have a sister who is hot with the html! - my skills are embryonic as yet!); further training (ultimately probably an MSc or a PhD); work that I can do from home such as research and telephone work; writing in a more formal way; campaigning; and courses for fun like English Literature, photography, and other things that have been a little neglected in my (strongly science based) formal education. I am trying to look upon this as an opportunity to do all the things that I have always wanted to do, but have not had time to do - this attitude to my unexpected career changes does not always come particularly easy! Of course, there are days of great frustration, especially as I have lots of ideas at the moment and still a fairly limited amount of energy to do them with, so I have to ration myself and stop myself from taking on too much.

The activities that you choose depend on yourself - but the general advice I would give is this: don't dismiss an activity because you would not previously have rated it; don't spend your life assuming that things are going to be better tomorrow - they probably will be, but always making that assumption stops you from finding things that you can do today; don't judge your success or failure at an activity according to your previous standards. Get out of the house if you can, whether by yourself just for the briefest of walks around the block, if you can, or by prevailing on the generosity of friends and family. Set yourself small, achievable goals and increase them slightly every day.

Hope some of this helps, and I hope that it is a short term thing for you and that you find that you can get back to something like your old levels of activity soon.

Take care of yourself.

Em

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I found trying to do a bit of exercise. I would walk to the bus stop get the bus that stopped almost outside the cafe and go for a cup of tea and rest and then set off back again. It gave me a reason to get a little bit of exercise and once I started to feel a bit better I could do a bit more (walk to the next bus stop on or to the other cafe further away). Then I knew when I could manage going to work. I did sometimes overdo it though!

I also started a scrap book which kept me occupied for a while! I also made a few cards and got into more arts and crafts stuff. Having a routine also stopped me from going mad. I tried to set my alarm for a reasonable time and go to bed at a reasonable time.

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Katherine, the honest answer is I cope badly. I get more frustrated than is is possible to imagine. I can't seem to get my brain to realise I can't do the same things as I used to. Last night I went into the kitchen to get cup of tea only to find it like a bomb site. Everyone else was in bed and I could not face coming down to that in the morning, so being me I just got on with it and washed up wiped down the surfaces, loaded the dishwaher and totally wiped myself out. In the old days I would have gone over the cooker and probably swept and given the floor a once over with a mop there was no way I could manage that. Cue frustration and mad plans to have a neb sit down for an hour and then get back up and finish the job at would have been well gone midnight. Thankfully common sense kicked in and took my cuppa off to bed nebbed and was asleep within minutes incidentally leaving my tea to go cold!

I guess it is the pred but I often break down and weep when I realise I can't actually do something I have tried to do. I am trying to learn not to go on until the tank is empty to stop at half full and take a rest but it is hard.

In many way gentle exercise is easy I can plan that, it is things like hanging the washing out, cleaning the cooker, or hoovering out the car those are things I try to do and get upset and angry with myself when I can't which leads me to push on when I should stop and then it takes forever to recover.

I don't think I will ever learn to accept the gentle life, I am probably always going to push that bit too hard and over-do things but I am getting a little better over time.

I am sorry I can't be really helpful, but I just wanted you to know that the frustration and emotion is normal and that it is OK not be super organised and plan everything cos in a house like mine nothing ever goes to plan anyway!

Bex