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Pain Dairy Been told to make by Disability rights

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13 years 1 month ago #46398 by terdun9
Hi there: Thinking how to make a pain dairy will help with looking at Disction again i have been trying to make a pain dairy and i have been trying to work out how to word it,
Example i wake up but because i have such painful eyes they are very sore and feel like i have gritt in them have to lay there for arouns half a hour before i can open them,
How can i get that across with out going on and i dont know how to word the rest of the the day and nights and should i do a 7 day dairy of just a few days.
i dont want it to go on to long

My mother has also done a lteer to them bless her the only thing is she has told them

OVER THE LAST 5 YEARS I HAVE SEEN MY DAUGHTER HEALTH DECLINE, UP TO ABOUT 2 YEARS AGO SHE WAS A VERY ACTIVE PERSON
SHE WNENT BALLROOM DANCING ABOUT 3 TIMES A WEEK SHE WOULD GO OUT AND ABOUT WITH HER CAMERA SHE HAD A VERY WIDE INTEREST IN PHOTOGAPHY.
SHE HAS ALSO ALWAYS GROWN HER OWN VEGATABLEE, FRUTE, SALADS. IN HER SMALL BACK GARDEN. NONEW OF THIS HAPPENS ANY MORE. HER ACTIVTIES ARE LIMITED NOW INDOORS AND OUTDOORS DUE TO HER MEDICAL CONDITION

And also should i phone DWP and tell them this is on its way to help snd one of my doctors has done me a letter to back me up because he has seen me latley nd he is going to tell them i cant walk more than 30 yards.
Thank you for your time
Jacqui
sorry fo all them caps
please i cant find anywhee on hee to help me with pain dairy

To Much Pain Will Kill Y ou In The End

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  • originaldave
13 years 1 month ago #46405 by originaldave
Replied by originaldave on topic Re:Pain Dairy Been told to make by Disability rights
painful eyes ? have you got sorgens ? if so there help forums and I think there are a couple should be able to give you ideas how to word it

for example "my eyes feel like there is sandpaper behind the eyeballs" :)

That sort of thing have you got tears in a bottle to help

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13 years 1 month ago #46407 by terdun9
Dave wrote:

painful eyes ? have you got sorgens ? if so there help forums and I think there are a couple should be able to give you ideas how to word it

for example "my eyes feel like there is sandpaper behind the eyeballs" :)

That sort of thing have you got tears in a bottle to help



Thats it you got it i sat here fo a long time tying to think of how to put that you got it "my eyes feel like there is sandpaper behind the eyeballs" but you read this mail and you get it just like that! stupid me
ummmm sorgens don`t no what that is everytime i say anything to my docto she just says "well umm yes thats pat of fibromyalgia" i really dont know why she is like this now since she seems to of been very funny since she got back from doing here becoming and doing missionary worker in Africa, ( and i do know yes us here in uk are very lucky to have what we have and thay don`t) as she reminded me
But as you might of seen by my last post i have seem to of found another doctor down there who seems to take notice of me! but back to my pain dairy this is my point i eally dont know how to work thingsand i will ask about sorgens as you call it i will have a look thank you Dave

To Much Pain Will Kill Y ou In The End

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13 years 1 month ago #46415 by pikelet
How about using a key?

Have a symbol for each long description eg your eyes in the morning as per your post. So you might have quite a few detailed descriptions, which you list before the actual diary begins, with a symbol for each description.

Then each day of your diary, put symbols against the times they happen.

Hope this makes sense.

Best!
pikelet

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13 years 1 month ago #46418 by pikelet
A further thought on recording pain:

When I used to help people fill in DLA forms at CAB, I tried to get as graphic description of the pain as possible - you are trying to make the person reading 'feel' the pain - so we might put 'a deep dull throbbing pain' or 'a sharp pain like being stabbed'. From your original post you seem to be quite good at this.

It's not nice, though, to have to focus on the pain, whether to describe it or to record it in a diary :(

Best!
pikelet

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  • originaldave
13 years 1 month ago #46422 by originaldave
Replied by originaldave on topic Re:Pain Dairy Been told to make by Disability rights
Jacqui wrote:

Dave wrote:

painful eyes ? have you got sorgens ? if so there help forums and I think there are a couple should be able to give you ideas how to word it

for example "my eyes feel like there is sandpaper behind the eyeballs" :)

That sort of thing have you got tears in a bottle to help



Thats it you got it i sat here fo a long time tying to think of how to put that you got it "my eyes feel like there is sandpaper behind the eyeballs" but you read this mail and you get it just like that! stupid me
ummmm sorgens don`t no what that is everytime i say anything to my doctor she just says "well umm yes thats pat of fibromyalgia" i really dont know why she is like this now since she seems to of been very funny since she got back from doing here becoming and doing missionary worker in Africa, ( and i do know yes us here in uk are very lucky to have what we have and thay don`t) as she reminded me
But as you might of seen by my last post i have seem to of found another doctor down there who seems to take notice of me! but back to my pain dairy this is my point i eally dont know how to work thingsand i will ask about sorgens as you call it i will have a look thank you Dave



read this
www.nhs.uk/conditions/sjogrens-syndrome/Pages/Introduction.aspx


your eyes might be "part of fibromyalgia"

but my money would be on sorgens with another problem secondary Sjogren's syndrome, when the condition develops in combination with another autoimmune condition, such as lupus or rheumatoid arthritis

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