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Sticky Blood-Hughes Syndrome Support
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My reading challenge

I am going to have go at reading War and Peace again 45yrs on from when I read it in 1968 when I was supposed to be studying for my O Levels! I have the audio book and will follow it on my kindle. It is going to be a real challenge given my propensity to misread words and lose track of the plot but I am determined to give it a go.

Will be keeping up with my thrillers for light relief!!

12 Replies

Well done I keep trying to read, I either fall asleep after the first two pages or can't remember who is who.

I have been thinking of putting a post it note inside the cover to explain who the people and places are


Hi Panda,

It's nice to hear from you & know you still have a bit of energy left to fight this damned thing.

Have you tried a net book.....they say they are good, you can change the size of the lettering & the back ground.

I was looking atone being advertised & you could change the back ground......so you could have black background with white writting !

Just a thought......Jillymo X Ps Off to see Proff Mchugh in the morn in Bath


Hi Jillymo,

I am pleased you are seeing Prof. McHugh in the morning. Is he a Haematologist or a neurologist? I hope you finally get your health problems sorted out.

I think I might treat myself to a Kindle one day, but not in a reading mood at present. I used to enjoy psychological thrillers, Val McDermid etc.

Anyway, good luck tomorrow. I hope you feel able to share your results, if that is what you want to do.


It is as though our brains cant cope with reading anymore.....I just cant seem to take anything in just lately.

It is a Rheumatologist I am seeing at the Royal Bath Mineral Hospital. I am praying he will shed some light on what is happening with regards to my health.

There are times when I feel I should be in hospital not a day patient,....I can honestly say I have never felt so unwell.

I have taken notes & have photos so lets see how I get on, I strongly suspect Sjogrens & maybe Lupus.

Of course i will let you all know how I get on, it is important for future ref.

A kindle would be worth a try.....put it on the I wont list for xmas or a forth coming birthday :-)

Take care

Jillymo x


Hi Jillmo,

Do you already have a diagnosis of Hughes Syndrome? Are looking at Sjogrens and Lupus in addition to Hughes? Yes, it can affect people in many ways. Life is hard, isn't it? Maybe you might have something else as well. All I can say is good luck for tomorrow Jillymo. Try and get some sleep tonight. I know that is difficult when you are in severe pain,


Hello Peggy.

No I have not been diagnosed with Hughs.....I have something called Hypoparathyroidism In short i am unable to store calcium.

I have become very unwell & now they feel something secondary is going on.

It is hard having to live like this, not only with the pain but the cronic lethargy, I have been on edge all day....I am praying this consultant will listen & come up with a firm diagnosis.

None of us want these retched autoimune illnesses but it seems unless you have a name for your condition your bits & pieces are in all departments & nothing is addressed.

We will see tomorrow.......it's my birthday so lets hope this consultant can make it a happy one. Jillymo x


Hi Jillymo

We spoke the other day, I also have hypoparathryoidism. Happy birthday for tomorrow. Maybe another diagnosis will be a great present to remember.

Have a great birthday!


Is you HPT due to surgery or is it like mine genetic & have you been diasnosed with Hughs ?

I an aware we are communicating on pandas blog is it ok to do that ?

i just looked back at an earlier message I wrote....I have spelt liberated with a d.....talk about brain dead.

Thank you for good wishes.....Jillymo x


What an excellent idea! Good luck! And enjoy. Living in an age when we can synch audio and printed words should do wonders for brain rehabs!

Again, brilliant idea!

( my Kindle has a "talk text" feature which I have used to listen to a book while walking. Now I'll try it for books that I'm having a hard time getting my head around. Thanks!)


You have liderated me I was not aware of " talk text " modern tec.....magic :-)

Jillymo x


I forget if it's text to talk, or what the formal name is. It's a feature on my old fashioned plain old Kindle.

I recently downloaded a Shakespeare sonnet ap which, ( takes a lot of room,) has noted Shakespearean actors reciting them. Y ou can read only, listen and watch, or read while listening. It's super!



I took war and peace with me on my various trips to hospital due to PEs and found it took my mind off the pain. Its not an easy read and the concentration required means other things fade away good luck


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