Sticky Blood-Hughes Syndrome Support
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struggling with my memory

Really struggling with my memory again. I have put a notebook on my kitchen table with what the day is in capital letters (thought Tuesday was Wednesday last week and took the wrong dose of warfarin) and any things I have to do each day. Have got some medical appointments coming up which needs at least three phone calls. But am trying to do one per day. Given up trying to read difficult books (reading is and always has been the mainstay of my life) and record most things I want to watch so I can rewind if I need to.

I went through this 13yrs ago when something happened during an anasethetic and so am having another brain scan and an assessment of my cognitive skills. I am using some of the strategies I did then and trying to keep life as simple as I can to stop my brain whirling around trying to make sense of everything. but it is so exhausting and frustrating.


5 Replies

Really sorry to hear you are having such a tough time of things at the moment. I know many of us struggle with this type of thing. I'm terrible with remembering to drink a cuppa that my hubby makes for me that I've nagged him then sits there and gets cold and I get told off!!!!

I think all we can do is what you are doing and that is try and make as many coping strategies as we can but just be kind with ourselves when they inevitably go wrong and laugh about it.

I hope your scans go well but in the mean time be kind to yourself and try not to worry too much I'm sure it will pass as with the last time :-)


The symptoms you describe are totally maddening and... yes I have these at times, and sometimes so bad, that I really can't function cognitively speaking! I just try and make light of which is not always easy. Mary F x


Hi - 52-- i very well know just what you are talking about!!! there have been many sites here exactly of the same thing______________ it s-cks , but we have to deal with it ---- what i say is it's here and real - i try to laugh it off ?????? it dosn't make it any better BUT it helps us to cope- and others that know our plight - just say YA --as to they that don't knopw and don't want to understand O-WELL they don't deserve an answer__ not to be negative -- just real :-)--------------- hope this helps -- if not than you can yell at me !!!!! [ hopefull not ] just 1 way to cope ?1?1?1 let me know how you fell about this ????????????????? me jet--


Hi Caroline,

It's so frustrating, I know, I too used to love to read, but forget what I've read so have to re-read same pages so many times, I've given up for now. I hope I can get back to it someday.

My speech and memory are dreadful and does get me down, but just got keep going and as jet says laugh, or have a rant when fed up of it. This is a great p,ace for sharing the good and the bad!!

I hope medical team can get some answers and help.

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


you sound like me, i am struggling with my train of thought, temper, appointments, days of the week the lot. Does not help i work with the public day to day, i find i stutter and not be able to say simple words.

Keep going at the NHS i have though they are slow and in some areas are not aware of APS :(

Love Karen x


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