Long term sick

Hi Kerry-anne,

I've been on the sick for quite a number of years now and can certainly relate to the difficulties of what to do with yourself. Obviously things are limited by the day to day symptoms and experience that is brittle asthma, so it can be difficult to get into a routine of things. After completing one course with the OU (Open University) about 9 or 10 years ago, I got back into it towards the end of 2006 and have been studying continuously since them. It's not easy fitting it around the general grind of being ill and frequent and protracted hospital admissions, but it certainly keeps my brain active. There's also a lot of online support and a huge online community within the OU, which is a great help and keeps me in touch with people at all hours of the day and night when other irl people might not be around so much. I've also found with the OU that there are many studying with them who have a variety of health problems, so there's plenty of peer understanding of the complexities and complications of the situation, whilst also plenty of encouragement to slog through the hard times and keep chipping at the study. Most importantly, I've also found the vast majority of tutors to be extremely understanding and helpful, and the OU as an organisation most accommodating and very well structured in terms of support for students with a vast array of disabilities/health difficulties. Yes, it's definitely something I'd recommend.

I guess one of the most important things is to work out a way of life that suits you, and that means trial and error. I like to do what I can when I can, making the most of breathing when I can do it, so during the times that I'm well enough I'll do nice things like go to the coast, or visit a National Trust or English Heritage place. I like to do lots of creative stuff too and despite no longer having my craft business, I still enjoy lots of craft activities and card making when I'm up to it. I also like photography so go out with my camera sometimes. I've found that the slower pace of life necessitated by the increased severity of my asthma over the years has made me appreciate the smaller things in life, and I pay much more attention to detail than I used to.

It can be tough being on the sick (something I think that many who work don't fully appreciate or understand), especially as it can often mean spending a lot of time on your own. I'm okay with that, but I do have to make sure that I have contact with people too (I live on my own), even if that's just a brief trip to the local shops to get some milk. It's good that you've joined a local group, and I wonder if there are any others that might interest you? How about something that's totally unconnected to health and illness too, because it can be so easy to make these things become the entire focus of your life, when in fact there is a lot more out there waiting to be harnessed. This isn't by means meant to undermine the importance of support groups - I think they're of vital importance - but diverting your attentions away from illness can, I've found, help me to realise that I am more than the label of asthma and therefore value myself more. It also helps when it comes to meeting up with friends, or meeting new people, if I have something other than illness to talk about as so many don't identify with it from a personal point of view.

Anyway, this has been a bit of a ramble and rather long, but maybe there's something of help in it.

Becky.

Hello,

I can completely sympathise with you, as I have just been off work for 2 months with my asthma. It's the most frustrating thing ever! It's driven me insane not being able to do much. The problem is that asthma really does take over your life! I'm really sorry to hear that you've been unwell for so long. Unfortunately, asthma comes at the worst of times, and it takes ages to get better.

Back in january, I had a chest infection, so was given antibiotics and then steriods, but neither did anything. So I've spent the last 2 months trying to get better, which hasn't been easy. Finally seeing some sort of improvement! It has completely taken over my life. And the thing is that now, I really won't take my asthma for granted. I just used to get on with it, but now I know how important it is to rest. You just need to remember that this isn't forever (although it does feel like it!), and you will get better.

To be honest with you, I've tried many things to keep me occupied! I don't think i've seen so much daytime TV, or watched so many films haha. But it is good to keep yourself occupied. My asthma nurse told me to go out and walk around when i was really ill... and I thought she was crazy, but the light exercise somehow built up my lungs. It is really difficult to try and not stop yourself from going bloomin crazy! Enjoy the rest. It won't last forever.. this is what people told me. They said, ""you'll have to go back to being all busy sooner or later when you are better, so enjoy doing nothing!"".. and they were right!

Natalie

Thanks for your replies ive been looking into some courses to get me out my flat I to live alone but have my family on my door step so I guess thats a bouns

Take care

xx

Hi Kerry-anne,

I am sorry that you are finding yourself in this situation at the moment... I can relate. I had always worked (more than) full time until March 2006, and have not worked at all since then. I can hardly believe it's been two years, at times. It does take time to adapt to this state of affairs - I don't think I'm done with the adaption process yet, by any means. My life has had to undergo some pretty big changes, particularly over the last year - both in terms of what I can do with respiratory function and problems with post-ICU myopathy and neuropathy affecting my mobility.

I had to make a very determined effort to think of ways to occupy myself during the long days on my own in the house - something which was very new to me, as in the past it's always been a question of not enough hours in the day, rather than the other way around!

I have said a lot of the below before, both in posts and PMs, so I apologise if any of this is repetition! Clearly, though, it's something that is a problem for many of us, so the more ideas to deal with it, the better.

Exercise is really important. You might think it sounds like a laughable idea to try to exercise with uncontrolled asthma, but almost everyone can do some form of exercise, and any exercise is better than none. Everyone can get physically fitter, and the fitter you are, the better you will recover when you do have bad episodes. Exercise releases endorphins which will improve your mood, and you’re likely to sleep better if you are physically tired. Having targets to achieve and seeing the amount you can do improving gradually over time will also make you feel better about yourself. Obviously you should talk to your doctor before starting an exercise programme.

Any exercise that you can do is better than no exercise at all. When I came out of hospital after a long admission last year, 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. 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.

There might be some sort of formal exercise programme that your GP can access for you. There may be a local pulmonary rehab programme – a gentle, supervised exercise programme designed for people with respiratory problems. These can be excellent, although of course it very much depends on the people involved with running them. Your GP may also have access to a specific gym programme for people with medical problems – again, these should be run by someone with an understanding of the different issues involved with exercising with a chronic illness. If none of these things are available, or they are not suitable, your GP may be able to refer you to a physiotherapist who can design an exercise programme to suit you. Exercising under supervision for a while may just give you the confidence to do more when you are on your own as well.

If you can’t access any kind of formal exercise programme, there are still things that you can do by yourself – obviously, though, do discuss it with your GP. It doesn’t have to be strenuous, even just making yourself slowly walk the length of your house or garden every couple of hours is achieving something. Weights and resistance exercises are often easier to do more of than cardiovascular exercise, as the latter will make you more breathless. 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. Write down what you have done each day and how long you managed to do it for, or how many reps, etc. If you can see a small improvement week by week, hopefully that will help to motivate you more.

Getting out of the house is very important in terms of your general health, mood and motivation – sitting inside staring at the same four walls all day is bound to make you feel more low in mood and lacking in motivation. It’s particularly recommended for your mood that you try to get out during the early afternoon when the sun is high in the sky. If you can’t get out the house very easily independently, do prevail upon friends and family – most of the time they’ll be only too grateful that there is something they can do to help.

Inevitably there will be times when you can do quite a lot and times when you can't do as much - and the variability can be hard to deal with, both for us and for our friends and relatives to get their heads round, too. 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, cross-stitch; 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. As my concentration and stamina improve, I am also thinking of doing some courses, probably initially something short and simple like a drawing or photography course at my local college, but eventually maybe an MSc by distance learning.

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. I find day-time TV - the dreaded Jeremy Kyle trap - makes my mood even worse! To try to break out of this cycle of apathy took a determined effort to actually change my habits.

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 this helps a little; remember you are not alone with this problem, there are many others on here who know what you are going through.

Take care

Em H

Thanks Emily you always help and make it sound like there is a light at the end of that long tunnel so thanks again

take care

xx

Hey Kerry-anne,

Although I've only had a month or a couple of months off sick at a time I can empathise with how frustrating it is. I still have to pace myself when I am in work/uni because of my eyes/asthma.

Have you tried the volunteer agency? My friend went last week (to the one in boro) because the one in Hartlepool was awful. They were really quick at responding and are setting her up with something that will fit round her health problems.

I know that the uni also do short taster courses in stuff so that might be an option.

I don't know how much you can get out and about into town or whether you are ok with dogs (asthma wise or otherwise) but I am about four days a week and can always do coffee (usually with my sidekick friend who I talked about above I think we are Costa's best customers! lol!).