Hi, I'm Jessica, and that's the one thing I never forget. So today, I was going to do a hair tutorial and
What not but I feel kind of pants and those take lot of energy so instead. I thought I would sit down and
We would have a chat about
How I can't remember yesterday or the day before and I'm not entirely sure what day it is today?
so I have a disability that affects my nerves and my muscles and
My hearing and various other things and causes a lot of fatigue
Which then affects memory now even though I was born with this condition
I wasn't actually diagnosed until I was 17 when my paralyzed both of my arms for a year and a half
And they rushed me into hospital. I had a whole load of procedures to check
What was what happened?
So it can be a variety of things and one thing they checked to make sure it wasn't was a brain tumor and to do
That they had to take my spinal fluid to a lumbar puncture
Which is where they put a needle into your back and suck out some of your spinal fluid
the fluid that goes around your spine and then up around your brain and
They took some of that out
But they hadn't realized that they left holes
And the rest of my spinal fluid leaked out through these holes into my body just not great then your brain is effectively like
Dying so although I'd previously had a few memory problems
Not anything really big you know being when I was very tired. It was quite hard to remember things
after this oh
Oh my memory. Oh dear because parts of my brain
Died
because they are so dehydrated not all of it which is good
Really part of the bit that no longer worked is the section that makes very short term
Memories so you have different types of memory you've got your long term memory
Which is you know you're thinking back to your childhood?
It's the deeply ingrained stuff that weirdly when you're super old
That's the only stuff you can remember like my grandfather started speaking
Swedish when he was over 90 because that there's memories that come back, but your midterm memory which is the stuff?
That's like you know hanging around um, but the last year the last few months
Things have been going on so you can probably remember that quite well what you're doing last month
And then you've got your short-term memory
which is right now this minute remembering what you did earlier this morning what you had for breakfast and
That's the part of my memory. It just doesn't it just it's not great
It's not great so while I know where I live
I know who my wife is I know that we're married the things that I have difficulty with are
for instance I will put my phone down and then I will have absolutely no clue
Where it is if you can imagine everyone gets that thing where they walk into the kitchen and think oh?
Why why did I come in here the reason for that is something to do with the threshold. It's because you've changed place
You've gone into a different room and your brain has switched track thinking now
We're in the kitchen so you can't quite remember the thought that you had in the hallway about why you wanted to go
Into the kitchen and that's pretty common it happens a lot
But for me
the
thought when I'm standing in the hallway of why I need to go in the kitchen it isn't just that I forget it when I
Enter the kitchen and it can then be remembered it's that it just is gone
It just doesn't
Create that memory and then stick it in my brain if a memory is created. I often have a lot of difficulty with discerning exactly
When that memories from so I'm looking for something say my compact mirror
And I have a very clear visual memory of using my contact mirror
Inside a taxi sitting the back of a taxi that's great, but is that memory from earlier today?
Is that why I can't find it did I leave it there in the taxi?
How was I in a taxi anyway, or is that memory from
yesterday, and I did use my compact mirror, and then I brought it home, and then I put it somewhere within my home.
Or is that memory from last year did I just completely make that memory up. and my compact mirror is in my pocket
As a result of this I obviously then have to write absolutely everything down. I've written down my notes for this video
And I have to write it down as soon as I have the thought the thought is ou
Must reply to my father
Which I'm now saying in a video so that he knows I do actually think and intend to respond to his messages
Sorry dad so do you have to reply to my father, and I will remember this suddenly write it down
I must write it down this very second because if I do not write it down I
Will move on so my house is littered with
Scraps of paper that I have torn from something and written down the incredibly important message
It's also to do with
important things like having to go to the bank or
Hospital appointment remember you have hospital appointment at this time, so I try to keep the pieces of paper once
I've written them in an easy place
I can spot it
So I'll know that I then have to look at the piece of paper
To remember the thing that is on but I have to remember to look at the piece of paper to remember thing that is on
The piece of paper and that's not always
great
But the memory I cope is with visuals with my tiny bits of paper
I have to write lists, and I have a weekly planner and I know
That I have to look at my weekly planner
I forget a lot of the time that I have to look at my weekly planner
But I at least know that important things will be on my weekly planner
So if there is a nudge at the back of my brain like
*murmuring to herself*
Something I meant to remember
I at least know to go and check my weekly planner
Where hopefully things will be written down and I always write down my weekly planner with the aid of other people
Whether that's my wife Claudia she's wonderful or Clara who is my assistant in all things and
Then they will remain to me
about
Okay, oh, yeah, this isn't say that. I can't create new memories that I can't make short-term memories
It's just that they don't all get created. How do I remember people's names?
and other important things?
Well as long as on 10 separate occasions
They are drilled into my brain at least one of them's got to stick
Yeah, okay, probably like three or four times of this time it will stick
So Claudia will talk me through something and be like oh, yeah
This person is now dating this person, and I'm like oh
two minutes later
Is this person still single?
no Jessica this person is now dating this person
Okay
Yeah, it goes on. I'm not gonna do the whole thing for you
But out of those 10 probably three of the times I hear the piece of information oh
Okay right good. That's in there now routine things are the easiest to do however
I'm putting my makeup on I know all the stages to do it so
It gets done in exactly the same order every time. I mean if something's missing it always throws me off
When it comes to remembering stuff one of the most important things in my life is obviously medication I take a variety of medications
You can
Find out more about that. Yeah, um pick this card above
Ugh I can't remember. That's the right side
This is the stuff I normally cut it out
It's just that you know the old jessica has forgotten this
But I'm leaving them in I'm leaving them in medication on my phone, so I have a medication alarm set on my phone
So I remember to take my medication three times a day
the problem is
It goes off and I look at it, and I turn it off
I can't remember then whether I've actually done it or not and each day has a little slots
And so I can look at it and visually go up. I
Haven't taken it, but of course that only works if you can remember to look at the medication slots which is again
Why I have other people in my life who was
very handily
Reminds me ever and ever or just my medication alarm goes off
and Clara will bring my medication and put it in my hand
And then Claudia comes home from work and she's like did you take your medication today?
Probably not
Now you might have got to this point and be like gosh Jessica that just sounds pretty normal
That sounds like me I too am a forgetful human being uh, and there's nothing wrong with me. I'm just a bit scatterbrained
like well
Okay, that's cool
One of the biggest problems with having memory issues is that all people are slightly forgetful every now
And then we all forget something so if I try and explain to someone that actually
It's quite a bad memory problem. It's very detrimental to my life. It's not like I just
forget the odd thing now and again I
just
See I forgot the end of my sentence
Again stuff I would cut out, but we're not um because they think
Like oh well. I'm a bit forgetful too
That's just life, and I'm like that's great, but I don't know the day of the week or the month
I'm not even a hundred percent positive what year it is
Number ten does it bother me more than anything else
Yes, it really does
I am quite fine with
having physical
problems I'm quite fine with
The chronic pain, I'm quite fine with bits to me that stopped working
Deafness I mean I wouldn't say it's it's great
Obviously it would be oh and health health
Yeah, it would obviously be very helpful to my life if I didn't have
chronic illness and disabilities and deafness and a bit blindness that would all be
Helpful if it wasn't here, but I could cope I can cope. It's fine, but a memory
Because it's it's at a core part of yourself memory your memories who you are it is
your
It's if it is hugely frustrating I hate it
I hate the constant I go up and down stairs
So much, I'm gonna go downstairs
And I'm going to get this from my bag. I'm going to get a drink as well, then I get down there, and I'm no
Thirsty I'm thirsty
I'm gonna get a drink, and then I get my drink, and I heard back up the stairs
And I reached the top and I'm like wait a minute fake memory
forgotten something
I'm gonna get into my bedroom, and then I look down on
Maybe it's on my phone and my phone is like halfway through something out
I need to go and tell my friend the ticket number
On the ticket in my handbag because I'm halfway through writing the message to her in which I say my ticket number is so
then I bring my whole handbag upstairs
Sit in my bedroom my computer so if my computer, and I see where I was doing on my computer mate
I was halfway through this so I start doing that and then another something happens my own
Mm-hmm, and then I look in my handbag and I'm like oh look there's a ticket
Oh, I was half way through a message doing just that
it takes so much time
It is scary and upsetting
It's especially scary when you sometimes turn around and find yourself in a place and you have no idea how you got there or why
you were there because I've had that before where I'm just suddenly in town
it's also annoying when it comes to things like household chores and
Claudia will ask me to do something
Yes, I will write that down on my list and then it doesn't happen and then she comes in in the evening and asks me
to do something
But you know what the best way to cope with those feelings is to take and then just set them aside
Being upset and frustrated and angry about a situation
I have no control over just nothing but bring bad feelings to me and
so I
Don't need that in some ways. I have a defense mechanism
Where I?
Know about I?
Just go through life. You know ditsy so then to some people it can come off as being just
Doing it on purpose
but actually I'm just
Kind of happy with who I am because it is just who I am the easiest things to remember are things that I have created
myself
Ideas that I have had I write books and stories. It's a work in progress
Working on it. Anyway. I can probably tell you a lot more about
Fictional characters, then I can real people that I know quite well because of the repetition
So if you tell me your birthday
Once for likelihood that I will remember it is not that high if you tell me your birthday ten times
You have a higher chance that I remember it whilst I am creating a character in my head
I will think long and hard about that birthday and the number of times
I thought about it and
The thoughts I put into it means the able stick
Which is why I have an app on my phone that tells me whenever it is. Anyone's birthday, and also sends flowers to various people
For me without me having to do anything because just because I don't remember you doesn't mean I don't love you
So the last and most important part of this video how can you someone who potentially doesn't have memory problems?
Help someone who does have memory problems?
Number one: be patient that really is the top of the list?
let the person try and remember something if it's taking them a long time you just you wait
And then if they need to help you fill in the gaps that's number two fill in the gaps always don't say oh
It doesn't matter don't say oh, you don't really need to remember that anyway
You're taking something away from that person
I want that information that you have that I had there is now no longer mine
Don't get cross if they forget things you've asked them to do don't get cross if they forget an important date
Your birthday, I remember my birthday because it's exactly one month after Christmas day
And I make sure everyone else remembers that - don't change the plan without informing the person that you've changed the plan
Even if they don't remember that earlier plan now this is just common courtesy
Okay, again. It's that feeling of personhood independence in your own person
This is the same as people who have dementia don't treat them like they are lesser. Just because they can't always
understand
Don't feel bad about repeating things Clara says this a lot he when we very first started working together
was
Nervous about being annoying so she didn't want to tell me something five times in a row even though
I hadn't done the thing or responded the first four times
And if genuine not annoying if you repeat something because then you remember the earlier times that you did it say you're good
Repeats away. This is my final one. It's
Probably the most helpful one and that is to communicate in writing
Since I'm deaf most of my communication is done in writing
People will send me messages with the time a date placement yeah, brilliant now. I know what's going on
Don't worry about sending me multiple texts
I'm really sorry if I don't respond to your message on my Instagram or on
YouTube or something because I would love to - I would love to hear I don't have spoons
And I forget so yes communication writing and send reminders if the person you're dealing with who has a memory problem
And you know me chat over the phone just send them any important information that you talked about even if it's got it
Even if it's like did you know that Susy and Johnny are not dating anymore ah and if that's like oh my god
This is amazing news so good
Just send a text afterwards so if you have memory problems, or you know someone who does what are your tips?
What would you like to share please put them down below in the comments also
Just share your story around
Memory
whether you are just someone who is slightly forgetful Or you're someone like me has no idea what to take it is
Connections and finding a shared story is one of the things that brings us together now
Do you also remember that this is my own experience? I'm just talking about my
Life if you have memory problems and there isn't a clear reason that you don't have quite a fatigue
And you don't you have been diagnosed with anything
But it does worry you please do go and see your doctor. Don't just take medical advice from YouTube
Because it could be a symptom of a larger problem that you should get checked out
I hope you've enjoyed this video if you have please give a little
Like and if you are new here, then please do subscribe it would be lovely
Bye bye my darlings