The funny side of lupus #18: We all know how... - LUPUS UK


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The funny side of lupus #18

amandalilley profile image

We all know how dibilitating, frightning, confusing and frustrating the LUPUS FOG can be.... but....we also appriciate how funny, comical, ironic and just plan silly it can be too...

Ie...keys in fridge, shower left running, make up in bread bin, money in washing machine, talking in tounges  etc....I am sure you all have some amazing stories about how it effects you.

The hardest for me is the memory loss, I just cant remember things, especially things I have done or achieved and the meningitis and septicaemia have increased the rate of deterioration.

To combat this, I use MY MEMORY TREE, as well as writing.  This tree is now very important to me. EVERYWHERE I visit, I bring something small back to put on it.

Because it is tactile,  I find that by looking, touching and the occasional prompting, I can now remember things a little easier... the words may not come easily, but thats covered by writing...but my family and I are also developing our own translation for my sayings such as...

Thingbob (anything I am pointing at)

Button tool (tv remote)

Mouth cleaner (toothbrush)

Water hose (shower) etc, etc, etc...

In fact, that will be my next project... a translation book for lupies and their families during fog attacts...... suggestions here please... lol

Anyway, I digress, I just wanted to pass on and share this amazing idea, which was my daughters, it has helped me, maybe it could help someone else.

Thank you for reading.

Much love, health and happiness to all. X

12 Replies

Lovely Idea 😊 Look out world I get a car this time next week again , for a while 😊

Thats great news.... I am lucky... I have a chauffeur..... am very posh... lol not.....cant drive, no peripheral vision... dvla computer he said

I am hoping eventually to get my daughter driving as I obliviously don't know how much longer I can drive for , but I live in rural wales , 40 miles from nearest general hospital etc , so it's a necessity here , that's why I have been house bound last 4 months . 😟

What a great idea and innovative memory aid.

I have a diary by the phone and another in my handbag so hopefully I don't miss anything, that's of course if I remember to transfer dates from one to the other!

GRRRREAT IDEA 🌟🌟🌟🌟👏👏👏👏💃💃💃💃

Brilliant idea ☺☺☺

I love your memory tree. What an amazing idea. It looks so pretty too. Clever daughter. 

What a lovely idea!! Love your "Lupyisms" too! Keep making us smile - you're doing a grand job!!!!

amandalilley profile image
amandalilley in reply to HazelW

Thank you, am honoured that people enjoy my ramblings and writings. X

Good idea, maybe it will help me find a very expensive watch I have misplaced shall I say. I know it is in this house somewhere but can't remember where I have put it. I am well known for putting things away safely and then forgetting where safely is but this has gone too far. I am having to try and switch off it upsets me. Memory loss is such a big concern to me but everyone just says it's just your age we are all like it, I don't believe that. Great idea though. X

amandalilley profile image
amandalilley in reply to Gillyg

It may be age related but my daughter is 25...... it was her keys in fridge, not mine and she is lupus free..... lol

I do hope you fine it, you must be finding it incredibly frustrating, especially as you think it may be a safe place.

I dont really make suggestions and I am not one for advice as there are many more qualified than myself, I just share, maybe this might help.

Whenever you want to put something in a safe place, write the object in a note book and next to it, where you put it.... I use this trick too, I usually carry a tiny notebook attached to my phone, in a waterproof pocket, works a  treat... but only when I remember to use it.... lol..... but it has been a useful exercise and has avoided the putfalls of frustration and upset with more sentimental or expensive items. Hope this helps and wishing you luck in finding your things.

Take care, much love, mandy

You are brilliant!  At the least, at least we keep our families and friends highly amused with our foggy days.  I write things in diaries, notebooks etc, but then lose where I have placed them...the most embarrassing being three students who turned up all at the same time.  After a good laugh at my deserved expense, they decided to have a triple lesson and thoroughly enjoyed their hour.  And they still all come to me...yay!  Also find like Gillyg that people think it's just age, although occasionally losing the odd word/name, feels very different! X

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