Chronic Illness and Boredom - any tips please?

Anoneemoose

Hi everyone! Just caught up.

GlasweJen and Mr Toad - good grief, you sound like you both have so much to deal with. And although I appreciate I only have a snapshot from this post, your positive attitudes are inspirational.

I do have my 'fed up and frustrated' days, but I always appreciate that although my illness is a pain in the backside, it is not life threatening (apart from a very tiny minority). And for that I am truly thankful. In addition, all of the suggestions given on this thread have given me lots to go on to help make my time more enjoyable and possibly productive. So, although I may not be able to do a lot of the things I used to, I can still do a lot, I just have to think of different ways.

I went into town yesterday to pay for my blue badge (£10 fee) and take my id in and as I didn't know where the nearest car park was, I ended up with a 10 minute walk..:eek: I was wiped out and had left my stick in my hubby's car too, so didn't even have that. Needless to say today I am pooped! I have however been sat in my garden for 20 minutes in the sun and it was lovely and peaceful. Might go back out in a little while.

Better_Days

I have had severe ME for over 10 years now, and agree boredom is a big problem, especially when I am 'tired but wired' - exhausted but finding it difficult to rest as my mind is working on overdrive.

The things that have helped me most are:

• audio books - our local library lends them on CD for free and they also have e audio books which you can download onto your lappy and listen to - even easier, you don't even have to get out of bed!

• 'listen again' on the radio - BBC Radio 4 Extra http://www.bbc.co.uk/radio4extra has a good selection of drama, comedy, factual, along with Radio 4 etc

• podcasts - there are 'podcatcher' apps (for PC Mac etc) which you can install and use search for and to automatically download podcasts of your favourite programmes. There are thousands of podcasts that you can browse from every genre you can imagine https://en.wikipedia.org/wiki/List_of_podcatchers

• DVD box sets - I watch these on my laptop whilst resting in bed. I find that visiting 'old friends' on DVD relaxing as I know the story and so don't find watching (or sometimes just listening) too demanding cognitively

• I used money kindly given to me for Christmas to buy a basic Fire Tablet, which I can prop up in bed and use to watch iplayer etc

• If you can afford it, Amazon Prime - lots of films and DVD box sets to browse through. Prime also includes a decent selection of music you can stream and next day delivery on many items. We subscribed to Prime for the first time last year, after dithering for ages, but it has been worth it. Plus you can get a free trial to try it out to see if you like it

• Reading on my kindle - increasing the font size makes reading much easier. However, it is cognitively demanding and like my other muscles, my eye muscles also tire quickly, and I do have periods of weeks when I am unable to read anything other than a short article on news website. I find propping the kindle up on a cushion much easier than holding it which tires my arms

• Online forums - Phoenix Rising http://forums.phoenixrising.me/index.php has an excellent forum which includes contributions from a wide range of people from all around the world. Also Health Rising http://www.cortjohnson.org/ Cort writes very readable articles on many aspects of ME & CFS and latest biomedical research

• Twitter - recently I've dipped my toe into twitter and found it very useful for keeping up to date with what is going on in the ME & CFS world. As tweets are short the info is 'bite sized' but often includes links to more information if you are interested. If you are following what has been going on with the PACE Trial twitter is a really good place to keep up to date with the twists and turns along with all the latest research news into ME & CFS. If you start by following people like Russell Fleming @Firestormmer and Tom Kindlon @TomKindlon you won't go far wrong

• I try and get to sit out in the garden for a few minutes every day, wrapping myself up in a duvet to keep warm. That helps a bit with the boredom of the same room for the rest of the day

• Blogging - if you fancy it - can be like an online diary, or sharing tips with others, anything you like really

• Using voice recognition software so I can still use my lappy when I am having problems with pain and lack of stamina in my arms and hands

One other thing - don't neglect your bone health. Have a look at the NOS website to see if you have any risk factors https://www.nos.org.uk/healthy-bones-and-risks/are-you-at-risk It may also be worth considering a vitamin D supplement if you aren't well enough to get out much, and checking you have enough calcium in your diet. Some more information from Dr Myhill here http://drmyhill.co.uk/wiki/Osteoporosis_-_practical_nutritional_considerations

Like many people with ME or CFS I am sensitive to medication. I am now in the position of being diagnosed with osteoporosis in my early 50's, but unable to tolerate medication to treat it, and unable to undertake enough weight bearing activity to maintain bone density. So, especially if you have risk factors, bone health is something to consider.

thisuseridistakenagain

I'm in a simialr place at the minute for different reasons. I can't focus on reading, I normally love films and TV binge watching but I can't concentrate on that either. Sor far I've had some successful time filling from...

Jigsaws from charity shop or colouring in while listening to an audiobook. Puzzle books, watching half an episode of something on netflix and going back to it later, going swimming, trying to do 10,0000 steps a day with my pedometer, Youtube, clearing out the cupboards, baking for other people (gives me an excuse to go and see them often), entering competitions, learning German on a free app/website. Soemtimes I just pop to the library or the park for fresh air and a walk out.

I'm not working at the minute and its strange because when I was at work I was desperate for free time. Now I've got it I dont know what to do with it and just want my busy life back!

Torry_Quine

Better Days Im exhausted just reading what you do.

Better_Days

Torry_Quine wrote: »

Better Days Im exhausted just reading what you do.

Not sure what you mean by this?

Torry_Quine

Better_Days wrote: »

Not sure what you mean by this?

Really. It just means that I couldn't begin to contemplate doing much of what you do and as a fellow sufferer you should appreciate that.

Mojisola

Torry_Quine wrote: »

It just means that I couldn't begin to contemplate doing much of what you do

That was my first reaction to Better Days' post as well but I guess she had listed everything that she does, not that she does all of them every day!

Torry_Quine

Mojisola wrote: »

That was my first reaction to Better Days' post as well but I guess she had listed everything that she does, not that she does all of them every day!

I would think so too!