Chronic Illness and Boredom - any tips please?

TBagpuss

You could see whether audiobooks might be better than reading - you might find they work for you.

missbiggles1

TBagpuss wrote: »

You could see whether audiobooks might be better than reading - you might find they work for you.

If you have a Kindle and an Audible subscription, for many books you can switch between reading and listening.

Bubblesmum

Anoneemoose wrote: »

I have a colouring book, but struggle with holding the pencils, however I could pick it up and put it down, I suppose. I think I am going through that 'denial' stage again, thinking I can do this, that and the other, and then when I realise I can't, I get frustrated!!

I am too at home, with CF and other complications. Will post more when I get to the end of your thread.

However, here is the link, to pencil grips I use.

https://www.nrshealthcare.co.uk/household-aids/reading-writing/pen-grips-writing-reading-aids/pen-grippers-pack-of-3?fee=19&fep=1946&gclid=Cj0KEQjw5Z63BRCLqqLtpc6dk7gBEiQA0OuhsCH3_3lIPOaVmTD4diXpkX7MSZV9f_m6xIg8efobDaYaAgL88P8HAQ

They are really good.......

Bubblesmum

Mr_Toad wrote: »

I seem to have periods of remission and, usually in the winter, bad patches. I'm just emerging from one at the moment.

In the summer I'm as fit and well so make the best of it and do as much as I can every day. I tend to start feeling tired at the beginning of December and this lasts through to about March/April.

Mr Toad - have you considered using a "lightbox" I have found this very helpful, when sunlight is not great, its one of my copying strategies.

Bubblesmum

Anoneemoose wrote: »

Thanks again everyone. I used to love to read, but as Brighton Belle says, it can be difficult to concentrate. I do try every now and again though, but it takes me ages to read a book!

I saw a picture of a friend on fb, in the Lake District, walking and I felt so envious. I absolutely love the Lake District and always used to say to hubby (before I got ill) that we should go walking (when the kids were a bit older). We go a few times a year, but have to take in the sights from the car now. I always feel at peace in the lakes. <sigh>

The suggestions on here have been brilliant though, and I will work my way through them to see how I get on.

Me again !

I agree with reading, which when I struggled, I started back with short stories, magazines etc, then Chick lits compared to my historical tombs
i compared it to when I can only cope with watching a soap, compared to a documentary!

Also wanted to share this link, http://www.nationalparks.gov.uk/visiting/outdooractivities/accessforall/accessible-lakedistrict

OH and I are both wheelchair/scooter users and use to spend our time looking at views from car parks until we used the four by four mobility scooters - one make is 'trampers". We hired them at Derwent Reservoir in Derbyshire.

We are coming up to the Lakes in June, and are looking at the link above.

Anoneemoose

Wow, thanks again for all the help. I am overwhelmed.

I was at the walk in centre with my daughter last night for 2 hours :eek: so have just caught up.

I am going to do what SaveSomeMore said and make a list (I love lists )..I will try most of the suggestions, I think, as most of them are relatively cheap.

I tried getting my head round the comp boards once, but got a bit foggy! I had forgotten about Foggy Friends - someone mentioned that to me years ago, so will have a look.

I am in the process of applying for PIP, but as most will know, it is notoriously difficult to get accepted for, so I don't hold my breath. I have been allocated a blue badge through my local council though, which will help considerably. At the moment, I have my old car, but once my sick pay stops, I will have to get rid of it, unless I get PIP. My car means I can get about if I need to, but even driving is painful at times, and of course I don't always have the energy to actually go anywhere!

Would also like to say, apologies if I repeat anything - I forget what I have already written :rotfl:

Bubblesmum

Dear Anoneemoose

I have so much empathy with you, I have been at home since Jan 2014 and some days it is a nightmare. I have CFS and CP, which has affected my mobility since a child.

I echo everyone's feedback, for me its about choice - yes a long list of possible activities, and also graded ones. When I was first off, I sofa surfed and slept a lot, now, I am learning to pace and planning my activities, so that I can get more consistency into my life.

I am fortunate, i have crafted since a child due to my mobility limitations, and although I knit, I have taught myself granny square crochet in the last year. I appreciate yarn crafts not your thing. Have to say making cards and paper crafts is not my cup of tea, perhaps its worth going on Pin interest to see what might inspire you?

I started a debt free diary on here... mainly because I wanted to record my journey and to document, my small achievements as well as reflect on my not so good choices.... and to focus on my debt ( as I have no income now coming in)

A question for you.... before CF what activities were meaningful for you - apart from reading and baking.

Can we help you to make them more adaptable?

For example I now use a perching stool https://www.nrshealthcare.co.uk/catalogsearch/result/?q=perching+stall

when cooking, yes I know its what your granny gets given and its not cool, but so what I would rather use something that means I can carry on a meaningful activity such as cooking - fairy cakes rather than wedding cakes!

My final three tips is, when I first found myself at home, and raised my head above the duvet, I used the commercial breaks on my TV programmes to get up and do something, as I was very conscious that I could loose any fitness I had if I didn't move, making the bed, but I broke the activity down into many tasks, as the lady with the slow cooker example said, it might take all morning to do something. But i did find i was achieving things, and time passed as i focused on the next challenge.

I taught myself mindfulness and living in the moment

i tried to do one generous act every day - it might be depooing the litter bo instead of relying on my OH, it might be contributing on here. Always directing my thoughts outside of myself.

I hope you find some happy things to do.

Brighton_belle

Really great post bubblesmum.

Mojisola

Bubblesmum wrote: »

My final three tips is, when I first found myself at home, and raised my head above the duvet, I used the commercial breaks on my TV programmes to get up and do something, as I was very conscious that I could loose any fitness I had if I didn't move, making the bed, but I broke the activity down into many tasks, as the lady with the slow cooker example said, it might take all morning to do something. But i did find i was achieving things, and time passed as i focused on the next challenge.

Love your whole post but would just like to add to this - I find it useful to vary activities. After x minutes (however long you can manage) of a standing task, do something sitting down and then go back to the standing task; after x minutes of concentration, do something that's automatic to give your mind a rest. I find I can do more by switching activities like this than if I try to get one job done from start to finish.

It's frustrating at first - I was someone who would stick it out and get a job done and get a sense of achievement from doing so. Walking away from an unfinished job took some practice.

Anoneemoose

Bubblesmum wrote: »

Dear Anoneemoose

I have so much empathy with you, I have been at home since Jan 2014 and some days it is a nightmare. I have CFS and CP, which has affected my mobility since a child.

I echo everyone's feedback, for me its about choice - yes a long list of possible activities, and also graded ones. When I was first off, I sofa surfed and slept a lot, now, I am learning to pace and planning my activities, so that I can get more consistency into my life.

I am fortunate, i have crafted since a child due to my mobility limitations, and although I knit, I have taught myself granny square crochet in the last year. I appreciate yarn crafts not your thing. Have to say making cards and paper crafts is not my cup of tea, perhaps its worth going on Pin interest to see what might inspire you?

I started a debt free diary on here... mainly because I wanted to record my journey and to document, my small achievements as well as reflect on my not so good choices.... and to focus on my debt ( as I have no income now coming in)

A question for you.... before CF what activities were meaningful for you - apart from reading and baking.

Can we help you to make them more adaptable?

For example I now use a perching stool https://www.nrshealthcare.co.uk/catalogsearch/result/?q=perching+stall

when cooking, yes I know its what your granny gets given and its not cool, but so what I would rather use something that means I can carry on a meaningful activity such as cooking - fairy cakes rather than wedding cakes!

My final three tips is, when I first found myself at home, and raised my head above the duvet, I used the commercial breaks on my TV programmes to get up and do something, as I was very conscious that I could loose any fitness I had if I didn't move, making the bed, but I broke the activity down into many tasks, as the lady with the slow cooker example said, it might take all morning to do something. But i did find i was achieving things, and time passed as i focused on the next challenge.

I taught myself mindfulness and living in the moment

i tried to do one generous act every day - it might be depooing the litter bo instead of relying on my OH, it might be contributing on here. Always directing my thoughts outside of myself.

I hope you find some happy things to do.

Excellent post! Thank you so much.

I am currently sofa surfing a lot...I try and pace myself, but when you have little people, it's not always as easy as I you'd like, I think! The school runs and an odd pop to the supermarket are the highlights of my day!

I have thought about a perching stool (amongst other things). I think when I get organised with our finances, I will look at the things I need. I would love a mobility scooter, because it would mean I could get out in the fresh air - even if it was just to the end of the road and back. The Miles without Stiles things looks amazing and my heart actually skipped at the thought of being able to take in some beautiful scenery without pain and too much exhaustion. Hubby has just told me he has got a pay rise, however, I imagine the tax man will see a lot of that!!!

We go to the Lakes, child free for a weekend at the end of April every year, so this will help immensely.


And yep, Mojisola, I too, am one to try and 'power through' and get jobs finished, otherwise I find it hard to relax...but I am slowly learning to chill a bit more!