Bit by bit, as I remember/come across things, I'll be putting on this page any tips/strategies that I think are useful. It's a work in progress, and I definitely *don't* have all the answers, so please comment if you have any suggestions for inclusion here!
NB: A lot of stuff on this page was not written by me! Where links are to other sites, I have shown the full web address so you know where you're going. Obviously, I cannot take credit (or responsibility!) for the content of other sites, and I may or may not agree with everything that's on them, but I hope you'll find them helpful.
Index of topics on this page
(If I've done this correctly, clicking on the links in this index *should* take you to the relevant section on this page. I add new items regularly, though, and it may take me a few days to update the links...)
- Hang in there
- The dangers of ‘coping’
- Living in bed
- Communication issues
- Food
- Retaining your own identity; not 'becoming' the illness
- General/various
- Advice for carers
- Pacing
- Personal care
- Dental health
Hang in there
"On particularly rough days when I'm sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good."
- I'm not sure where this quote is from but I find it helpful!
The dangers of ‘coping’
The point of this page is to share strategies that may help us cope - and that's a good thing. But there's a difference between really coping and appearing to cope, and many of us with chronic illnesses get very good at acting, at putting on the "I'm OK" mask. And while this in itself can be a coping strategy and a defence mechanism, it can also be very damaging. This brilliant and important post explains it well: http://karajanespencer.tumblr.com/post/81124408744/coping-well-it-doesnt-always-do-you-a-favour
Living in bed
- Practical tips: http://dannilion.com/2013/07/perfecting-bed-life/
- Tips on getting more out of life in bed: http://documentingme.net/2014/03/10/tips-on-truly-living-from-bed/
Communication issues
- See "Your Call Will Beyonce As Soon As Possible"
- http://www.dreamsatstake.com/2010/04/eyes-wide-shut.html?m=1
Food
A friend of mine has an ME blog with a section about cooking that she regularly adds to. There is a fab selection of easy recipes for carers to make, plus a section on extra-easy food to make yourself if you can stand for a couple of minutes and can hold a bowl or plate. Everything is rated for time, skill level, and how easy it is to eat. Well worth checking back frequently to see if there's anything new. See http://copingbadly.blogspot.co.uk/p/cooking-recipes.html
Retaining your own identity; not 'becoming' the illness
- Remember: "Nothing can dim the light which shines from within" - Maya Angelou
- http://thetinkerbelleandhummingbirdmeblog.blogspot.com.au/2013/07/blue-hair-tattoos-and-self-expression.html
- http://thetinkerbelleandhummingbirdmeblog.blogspot.com.au/2012/03/self-worth-with-me-blog-discussion-2.html
- There is a great site about this issue: www.visitingmrssmith.com. A quote from that site:
"We don’t have to be annihilated by illness. We can still exercise our character and be the person we have always been. We can retain our ‘elasticity of mind’ ....
A life with chronic illness is not all about physical symptoms. It is also about how we lose our place in society when we lose our health. We are judged, measured and expected to behave in accordance with prejudices and stereotypes about the ‘invalid’.
How this happens, why this happens and what we can do to deal with it is on these pages."
See www.visitingmrssmith.com for more!
General/various
Other sites that have useful tips for various aspects of life with a chronic illness:
Advice for carers
General/various
Other sites that have useful tips for various aspects of life with a chronic illness:
- http://copingbadly.blogspot.co.uk/p/index-of-posts.html
- PDF: www.hfme.org/PDF/HFME_Hints_and_Tips_for_ME.pdf
Advice for carers
- Stonebird's guide to supporting someone with severe ME: http://www.stonebird.co.uk/A%20Practical%20Guide.pdf
- http://documentingme.net/2014/04/15/advice-for-nurses-working-with-severe-me-patients/
- Is it bravery if you don't have a choice? (Or: kudos to carers)
http://sallyjustme.blogspot.co.uk/2013/12/using-fitbit-for-pacing-for-me.html
Personal care
http://thetinkerbelleandhummingbirdmeblog.blogspot.com.au/2013/02/super-speedy-washing-for-super-ill.html
Dental health
http://thetinkerbelleandhummingbirdmeblog.blogspot.com.au/2012/12/dental-care-with-me-5th-blog-discussion_4971.html
Personal care
http://thetinkerbelleandhummingbirdmeblog.blogspot.com.au/2013/02/super-speedy-washing-for-super-ill.html
Dental health
http://thetinkerbelleandhummingbirdmeblog.blogspot.com.au/2012/12/dental-care-with-me-5th-blog-discussion_4971.html
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