Feeling a bit low today, looking back over my life what it was to what it is now.
The house is no longer as clean, no energy to do and the hubby's idea of clean and mine differ slightly ha ha! The worse though is low energy when you have an eight year old son and you want to play, take him places but you know that you will suffer for it later but it's not his fault his mums body has decided to attack itself.
Anyway today's plan is the cinema with my beautiful boy, my nephew and a couple of their friends and if I'm knackered later then so be it at least the smile and laughs from my son will raise me up. So I better get showered and out of my pjs (been living in them for last 2 days).
Have a good day everyone
Written by
annie330
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Yes we have all been there I often have to cancel things at the last moment, rest before and after we do anything big. I too am low today with my muddled mind I called a friends son the wrong name (ny other friends sons name) and they made me feel so stupid and inadequate but I know that this is Hughes Im always messing up forgetting things or saying the wrong things, today Im mourning the old me.
Sorry you having such a rough day hon, I wish more than anything for understanding when we have those moments, we cannot help our mouths saying the wrong thing. It hurts too, when people laugh or get cross with us!
Grrr, It makes me cross cos we cannot help it!!
I do hope you feel better, and i know its no consellation (ooops spelling) but you are not alone!! Suzipawz, myself and another friend recently met for a meal and chat, conversation interesting and challenging, very!!!!! Was a good laugh!!!!
Incidentally both my daughters have learned to answer to each others names, bless them, I always get them wrong, one is 27 the other 14!!!!!!
Take care, sending big but gentle hugs love Sheena xxxxxxxxxx
Thanks you have made me feel better I'm always calling my daughter my sisters name.Interestingly I've been particularly muddled and my INR is 4.5 so i don't think what our INR is matters.
I am with you all. The other day I just kept saying the wrong words for things. Feel so stupid.
My Mum (who we found out had Hughes after she died!) used to address my brother-in-law as 'Nosey, Nigel, Neville'! His name is Neville, my wiemeraner was called Nosey and one of my uncles Nigel! She always went through the whole repertoir before she got the right name!
Hi all, I am the same, but my children are older and settled with partners, thank goodness, I now get their names right, most of the time anyway, I haven't called them the previous boy/girls friends names for a long time.
I am still in my pj's just waiting for the little boost of energy to kick in.so I have the energy to have a shower.
Im writing this with the laptop still in bed!!! Just can't drag myself out quite yet as its warm in here and so dull and miserable out there and as I say to my other half - whats the difference from sitting here warm to getting up and getting cold!
Anyway what I was going to chirp in with was that I have always been the butt of jokes with the wrong words that I come out with in my family, who think its hilarious when I get them muddled. Even now when they know the reason for it they still go on laughing at me and I just die inside when they do it as it just reminds me of what I have. I would almost just rather make the mistakes than know the reason why I am making them if you get what I am saying?
I want to shout at them "so why do you think thats so funny, you try living with this disease", I did try protesting once but it just made them all laugh more.
I have also told them they hurt me when they laugh at me but that was soon forgotten.
Think my worst time for forgetting a name was when I was writing Christmas cards and my 8 year old son was writing his. I just forgot his name, I was staring at him for what seemed like ages (think about 5 mins), he asked me what was wrong, I then wrote our surname in the card not his first name! I started crying and then remembered his name so wrote over our surname. My son looked at the card and said "we get told at school that if you make a mistake you should cross it out not write over it as that looks messy".
I was pretty upset about that. Most of the time I just laugh stuff off but that was really awful.
My worst was just after we had gotten a puppy....The puppy's name was Strauss and my son's name is Sean...I told someone that every time we left "Sean" alone he turned over all the trash cans...I meant "Strauss" of course...but everyone thought my son was strange
HI JUST BEEN READING THIS AND THANK GOODNESS THAT I AM NOT THE ONLY ONE - LACK OF ENERGY ETC AND MUDDLED WORDS ETC. MY HUBBY HAS GOT TO UNDERSTAND WHAT I MEAN AND THEN I GET WORRIED INCASE I SAY THE WRONG THING WHEN I AM TALKING TO SOMEONE ELSE. CONCERNING LACK OF ENERGY - WELL I FIND THAT I HAVE TO GET UP EARLY (5am) to cram in all of the days things before I start to wind down at about 12pm and then in the afternoon I just fall asleep but awke feeling alot more refreshed.
I cannot bear the sleepovers that my daughter has at times, she is 16 years but i like to tidy up before anyone comes and then I have to stay in my day clothes for a few good hours and then change into nightwear when I feel so relaxed. She is driving me mad at the moment because she wants a new year sleepover tonight and quite truthfully I do not want it, I asked her why her friend cannot ask her to sleep over, and she says that her friends mum has been at work all day and is in bad mood. It seems that my daughter cannot quite see how this APS, LUPUS etc effects me, even though she suffers from it too. She doesnt help at all and her room is a mess and I like to tidy it up as I don;t want her friends thinking we live like this. My hubby helps but he is busy at the moment digging trenches in the garden ready for the gas man to put new gas pipe in and I do not want to get him anxious - he would say "leave it and let her friends see what she is like"
I know about the lack of energy and muddled words...today was a bad day..in bed all day..when my husband asked what was wrong I told him the only way I could describe it was that someone had pulled the cork and let all my energy out, not even enough energy to sit in a chair and read a book...I think I hate this more than anything else about the disease.
You are all talking about my life, I was getting worried i was getting dementia because i kept forgetting things When i was addressing cards I couldnt remember how to spell Glasgow, I got so upset i had to phone my husband at work crying like a baby, luckily he is very patient with me My biggest problem (which always gets a laugh) is calling myy sons by my grandchildrens names and visa versa. It doesnt help that we have 3 year old twins who are identical. When i call one of them the wrong name, though im not by any means the only one who does it, they look at me and say 'silly old gran, im Oscar hes Isaac'
One of the things i hate most about APLS is that i dont get to spend more time with my grandchildren because i just dont have the energy, i have to wait until my husband is homee (he works away) coz i i cant cope with the 4 of them on my own. There now Ive had my moan and would like to wish you all a healthy and prosperous 2012
tiredness and low energy is common place and REALLY ANNOYING, i am still on long term sick from my job as i can no longer hold the detail and information i use to and it drives me nuts my kids make me laught because if i call them i normall go kids and they all answewr or go through a list and they all answer even my 4 year old lol It can really be annoying when the brain fog gets going but as my 6 year old says dad when your brain goes on holiday who is driving the bus lol i always say its on automatic and the driver will come back soon lol
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APS diagnosed July 2018 - still unwell
Anyone IgA Deficient with APS? Sarcoidosis APS
Hughes Syndrome
