As lm in a really bad flare at the moment which is affecting my vison/light sensitivity and needing to wear sunglasses even in a darkened room lv just found that on You Tube there are quite a few audio books to listen too, which l didnt realise You tube had, so lm finding it really helpful via my earphones and laptop.
@imawakebutsleeping, it was not an insult. Support groups can provide helpful hints but journalists can help us by communicating the serious issues. And if they do not understand then we should educate them. Nothing wrong with this. It is not attacking anyone to push for an accurate diagnosis. Framing it as such has been extremely detrimental, though has always been curious.
@imawakebutsleeping, you misread what I said. I never belittled anyone for using any of these things. If it is about what will help, it would be for journalists to understand the issues and to communicate the problems with the diagnosis. This is not nitpicking nor politics; from the scientific/medical perspective it is key.
@mclaughlinjilld no...l did not misread you...'watching snails' what an insult...but where are you coming from with this mission on correct use of terminology.lm not interested in taking on journalists.The' help' asked for here was what a suffer uses to find relief, or did l misread that.Yes ,perhaps some journalist dont understand ME because of the use of terminology of CFS,,but until the medical field stop using that as a dx , CFS terminology is not going to go away.Go attack them.
@imawakebutsleeping ..as yr way of wording that 'watching snails' that a poor sufferer could only do was of no value..we all wish we could 'take up the fight' but some of use cant.
What would be more helpful than poetry or watching snails would be to use correct terminology and descriptions. We cannot "get the word out" about ME by using ME/CFS and mixing terms and meanings. ME is not CFS and should not be called CFS. If anything, CFS has been a misdiagnosis that ME patients are trying to prevent and correct. Continuing a mistake and misdiagnosis will not help ME patients.
@mclaughlinjilld how dare you attack and belittle someone who uses poetry or 'watching snails' as you insultinly put it...this thread is about what relief we use by distraction of the pain we suffer, not about the politics of terminology! yes ME or CFS or what ever ayone on this thread wants to call it, l dont care..lm suffering and lv no energy left to fight points of correct use of terminology,so please take yr nit picking somewhere else.
My cat. She waits until she hears me stir and will be so happy and come over an purr. When she comes in from outdoors I smell the outside on her fur and can tell what is happening outside by what she has 'collected': such as rain, smoke from peoples' fires.
Finding something to be grateful for helps me get my mind off how bad I am feeling..sometimes I write the things down so later I can refer to them. Some examples I am grateful for: understanding family, friends, a place to call home, water to drink, clothes to wear, a bed, blankets, pillow, socks, supplements, a computer and internet connection...and compassionate people like you who are working on getting the word out about ME
I write poetry i had a severe case of cfs or m.e, i wrote from my bed i still do sometimes.I got my book' Words on Paper 'published in 2011.Shadow Boxing is a poem in my book i wrote bout my feelings about CFS as they were then.Im now working on another book the first book took years so i dont no when ill finish.But its something I enjoy doing and it takes my mind off M.E.
...l keep my clothes now as simple as possible ie non iron navy tracksuit bottoms and white tee shirts.these double as bedwear if l crash/bedbound.l wear easy to pull on fleece socks and when cold chunky cardi as sweaters take too much energy to put on.Meals, if bedbound are slow cooker recipes (double quantity to freeze) pre by hubby, but l will alway try and join him in evening if not too ill where he makes me a bed up on sofa.l like lots of.flowers around,When ill keep life simple and rest
....if lm bedbound, l have alarge canvas bag all ready made up with essenitals ie, wet wipes/toiletries as will not have energy to shower, sunglasses for light sensitivity, earphones for laptop, mobile phone &.tel no, to call friends/family.hubby will make me a large flask tea/coffee and lunch before his work.l ignore all incoming phone calls & callers at door as lv learnt people will still keep you talking even when told how ill l am..continue..
To help myself to cope with this illness l recommend getting a timer(mine was £2.50 ebay) and changing whole life style to as simple as possible.If lm not bedbound and lm not crashing on a given day l set my timer to do chores at 15 min allocated per room with 30min to hr hr rests each time...o room should take more than 15 min to clean/tidy if well organised with cleanig tools etc....continue,,.,
@ironbith I do this all the time.... I placed a reclining chair in front of the window where I can get directly sun light into my eyes.. I hope u are well bella1
As lm in a really bad flare at the moment which is affecting my vison/light sensitivity and needing to wear sunglasses even in a darkened room lv just found that on You Tube there are quite a few audio books to listen too, which l didnt realise You tube had, so lm finding it really helpful via my earphones and laptop.
imawakebutsleeping 3 weeks ago
@imawakebutsleeping, it was not an insult. Support groups can provide helpful hints but journalists can help us by communicating the serious issues. And if they do not understand then we should educate them. Nothing wrong with this. It is not attacking anyone to push for an accurate diagnosis. Framing it as such has been extremely detrimental, though has always been curious.
mclaughlinjilld 3 weeks ago
@imawakebutsleeping, you misread what I said. I never belittled anyone for using any of these things. If it is about what will help, it would be for journalists to understand the issues and to communicate the problems with the diagnosis. This is not nitpicking nor politics; from the scientific/medical perspective it is key.
mclaughlinjilld 4 weeks ago
@mclaughlinjilld no...l did not misread you...'watching snails' what an insult...but where are you coming from with this mission on correct use of terminology.lm not interested in taking on journalists.The' help' asked for here was what a suffer uses to find relief, or did l misread that.Yes ,perhaps some journalist dont understand ME because of the use of terminology of CFS,,but until the medical field stop using that as a dx , CFS terminology is not going to go away.Go attack them.
imawakebutsleeping 4 weeks ago
@imawakebutsleeping ..as yr way of wording that 'watching snails' that a poor sufferer could only do was of no value..we all wish we could 'take up the fight' but some of use cant.
imawakebutsleeping 4 weeks ago
Many ME and Fibro people are able to lead normal lives by going close to tropical seas or by avoiding harmful types of mould.
PaulBeet 4 weeks ago
What would be more helpful than poetry or watching snails would be to use correct terminology and descriptions. We cannot "get the word out" about ME by using ME/CFS and mixing terms and meanings. ME is not CFS and should not be called CFS. If anything, CFS has been a misdiagnosis that ME patients are trying to prevent and correct. Continuing a mistake and misdiagnosis will not help ME patients.
mclaughlinjilld 4 weeks ago
@mclaughlinjilld how dare you attack and belittle someone who uses poetry or 'watching snails' as you insultinly put it...this thread is about what relief we use by distraction of the pain we suffer, not about the politics of terminology! yes ME or CFS or what ever ayone on this thread wants to call it, l dont care..lm suffering and lv no energy left to fight points of correct use of terminology,so please take yr nit picking somewhere else.
imawakebutsleeping 4 weeks ago
My cat. She waits until she hears me stir and will be so happy and come over an purr. When she comes in from outdoors I smell the outside on her fur and can tell what is happening outside by what she has 'collected': such as rain, smoke from peoples' fires.
AgitCrip 4 weeks ago
Finding something to be grateful for helps me get my mind off how bad I am feeling..sometimes I write the things down so later I can refer to them. Some examples I am grateful for: understanding family, friends, a place to call home, water to drink, clothes to wear, a bed, blankets, pillow, socks, supplements, a computer and internet connection...and compassionate people like you who are working on getting the word out about ME
twinsmom528 1 month ago
People like you delight me! Thank you so much for your work and empathy! :-)
summaoi 1 month ago 2
I write poetry i had a severe case of cfs or m.e, i wrote from my bed i still do sometimes.I got my book' Words on Paper 'published in 2011.Shadow Boxing is a poem in my book i wrote bout my feelings about CFS as they were then.Im now working on another book the first book took years so i dont no when ill finish.But its something I enjoy doing and it takes my mind off M.E.
goldielocks57 1 month ago
...sorry below should say'room should take NO MORE than 15mins(or less) to clean and tidy if well organized.'
Added note,lv asked hubby to take up old hobby of tropical fish,They are wonderful relaxing to watch when bedbound and suffering pain.
imawakebutsleeping 1 month ago
...l keep my clothes now as simple as possible ie non iron navy tracksuit bottoms and white tee shirts.these double as bedwear if l crash/bedbound.l wear easy to pull on fleece socks and when cold chunky cardi as sweaters take too much energy to put on.Meals, if bedbound are slow cooker recipes (double quantity to freeze) pre by hubby, but l will alway try and join him in evening if not too ill where he makes me a bed up on sofa.l like lots of.flowers around,When ill keep life simple and rest
imawakebutsleeping 1 month ago
....if lm bedbound, l have alarge canvas bag all ready made up with essenitals ie, wet wipes/toiletries as will not have energy to shower, sunglasses for light sensitivity, earphones for laptop, mobile phone &.tel no, to call friends/family.hubby will make me a large flask tea/coffee and lunch before his work.l ignore all incoming phone calls & callers at door as lv learnt people will still keep you talking even when told how ill l am..continue..
imawakebutsleeping 1 month ago
To help myself to cope with this illness l recommend getting a timer(mine was £2.50 ebay) and changing whole life style to as simple as possible.If lm not bedbound and lm not crashing on a given day l set my timer to do chores at 15 min allocated per room with 30min to hr hr rests each time...o room should take more than 15 min to clean/tidy if well organised with cleanig tools etc....continue,,.,
imawakebutsleeping 1 month ago
I lay in the sunshine thru a window or even at my front door.
ironbith 1 month ago
@ironbith I do this all the time.... I placed a reclining chair in front of the window where I can get directly sun light into my eyes.. I hope u are well bella1
kaiserMECFS 1 month ago
@ironbith i do this in winter on sunny days. lay on my couch with curtains drawn soaking in the sun. Or even in bed when i really sick.
goldielocks57 1 month ago