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On behalf of Shar & myself, I'd like to wish all of our readers
a very Happy Christmas & a Healthy New Year, and thank you for making
Butterfly News so successful. We have now reached, and passed, the
1000 member mark!
This month's article was featured in Lupus UK's News
and Views magazine, and is reprinted here with kind permission of
the author, Jane Robinson.
Now what was it that I
was doing?
Do you have trouble with your memory? Particularly when you are
tired or your lupus is particularly active? Do you forget what you
are saying mid sentence? Do you forget how to spell a really easy
word that you know you know? Do you struggle remembering why you
went to the shops? You are not alone!
One of the funniest things, yet scariest moments of my life have
happened during a lupus flare and have involved me forgetting simple
daily living activities. One morning I woke up and started to get
dressed. I got some socks out of a drawer but I did not know what
to do with them! I decided to go back to bed for some more sleep
and fortunately when I woke up I knew that socks went on your feet!
Later that same morning I was making myself a cup of coffee. I put
a teabag on top of the instant coffee granules and poured in some
hot water and then milk. I wondered why my coffee looked a funny
colour but it was not until I tasted it that I realised what I had
done. Another time, I left the house to go to work one morning but
when I got to my front gate I did not know which way to go. I turned
around and went back inside the house and phoned work to say that
I was not coming in because I was apparently not feeling well!
Other stories include calling Brussels sprouts "carrots" and elephants
"monkeys", then telling this to my rheumatologist I told hime I'd
said carrots were elephants!; phoning for a pizza and not knowing
my own home `phone number when asked for it; forgetting how to count
when counting some money to pay for something in a shop ... what
did come after 4?; talking to someone and listening to the rubbish
coming out of my mouth but not being able to think about why it
was rubbish; mixing up phrases and not being able to complete sentences;
or having to substitute other words for the elusive ones.
Everyone, with or without lupus, does some of these things from
time to time and some more frequently than others. But when lots
of them happen over a short period of time you start to think all
sorts of things. Is this lupus or am I just having a "brain-dead"
day? Am I losing my mind? What are these drugs doing to me? How
embarrassing?
I have often heard lupus sufferers talk about these symptoms so
if you do suffer from them do not think that it is just you! Loss
of cognitive (mental activities including perception, recognition
and judgement) function is a symptom well documented about lupus
sufferers.
In Understanding Lupus by Dr Graham Hughes it states that "Inflammation
in the brain provides one of the most difficult aspects of diagnosis
and management of lupus ... The patient can develop headaches, movement
disorders, seizures (fits), depression or thought disorders, varying
from the severe (psychosis) to the most subtle, cognitive disorders."
In Lupus UKs publication Lupus - A GP Guide to Diagnosis it states
that "Neurocognitive dysfunction is also a common feature in lupus
and may be present in up to 80% of the patients with active neuropsychiatric
manifestations and in 42% of overall lupus patients. The various
studies of cognitive function suggest considerable impairment, including
attention and concentration, various aspects of verbal and non-verbal
memory including working memory, verbal fluency, visuo-spatial skills,
psycomotor skills and cognitive flexibility."
Some tips on dealing with memory problems are listed below. They
have all been learnt the hard way!
· Make lists - shopping, things to do, people to write to;
· Write down phone numbers, addresses, family members in ONE place
and do this as soon as you are given the information;
· Keep a diary and keep it with you at all times. Write down everything,
especially engagements - time, place and reason!
· Ask people to remind you to do things;
· Leave yourself messages on your answer machine!
· Use technology that can help ... spell checkers, thesaurus, electronic
"assistants"; · Keep a notice board or wipe board somewhere you
see every day. Keep the board clean and tidy and use grids or colours
to help you organise your day and your life!
· Put things in one place, preferably file things as soon as you
get them;
· Pay bills as soon as you get them and then put them away;
· Post-it notes are helpful but they can come off and get lost so
use them with care;
· When reading a book, magazine or journal and there is something
you want to refer to later mark the page with a book mark or a page
marker (like post-its but smaller and designed just for this job!)
Above all:
· BE HONEST with your family, friends and colleagues (which can
be a bit harder). Explain to them your problems. They will not only
try and help you but they will also be more understanding and less
likely to laugh at you when you say something silly.
To help me with my memory problems at home and at work I invested
in a Personal Digital Assistant or PDA. Personal organisers whether
manual (filofax or diary) or electronic (PDA, palm held computer,
electronic organiser) are also helpful, or anything that allows
you to keep all your useful information in one place and also acts
as a reminder to do something or to meet someone.
My PDA includes a diary, an address book, to do lists and a note
book function as well as having a facility to write e-mails for
later transmission via and infa red link to a mobile phone. It is
linked to my personal computer (PC) at home and information can
be updated from both the PC and the PDA so that both are synchronised.
It bleeps at me if I have an appointment and I keep all my to do
lists and shopping lists etc. for home and work on it. The only
problem would be if I lost it when I had not remembered to synchronise
back to my PC! It is now my life and I hate being anywhere without
it!
Other modern technology can also help. Digital phones, both mobile
and for home use, now allow you to store telephone numbers as well
as some allowing you to record messages to yourself and family members
and you can set alarm calls (and not just to wake you up!) and reminder
calls.
The reason I say be honest with people is simple - they are more
likely to understand and no-one likes being laughed at even if they
themselves find a situation quite amusing. People will generally
not laugh at you if they know that this is a symptom of your lupus.
Of course, it is perfectly OK to laugh with someone about instances
when your brain appears to stop, especially when it looking back
on them ... it makes a good story if nothing else and if you can't
laugh at yourself who can ...!
Now what was it I was doing? ... an epilogue
Following my article above, I suffered another CNS
flare. I somehow had the foresight to write some things down about
it and how it made me feel so that I could try and explain it to
my consultant and GP. I thought it might help some others too, especially
having had such a positive response from you from my last article.
It seemed that I managed to communicate something many of you have
suffered.
During the flare I couldn't walk in a straight line,
my speech was slurred and I had to think SO hard to do every day
things, let alone things that actually required thought, I well
and truly had brain ache all the time - my brain ached like sometimes
my joints do. I said extremely silly things when I tried to have
sensible conversations so I avoided them. I had a persistent headache
and mental exhaustion. I found myself saying "left, right, left"
as I was walking along. I squinted if I had to concentrate.
I had to leave notes for myself all over the house
as well as asking people to remind me to do things. I made arrangements
to go and see people and then promptly forgot. If I thought I needed
to do something I'd say it out loud until I had done it or by the
time I'd got out of my chair I would forget.
I chose not to drive because the decision-making part
of my brain seemed to have given up. Normally when my lupus is more
active than normal, I make sure I rest well by reading a lot. I
couldn't read for more than 5 minutes and after that time I would
find myself reading the same line over and over again.
Above all, the feeling was that my brain was full
up. It couldn't take in or deal with anything more. I felt numb
and fuzzy headed. Almost the light headedness that can happen if
you stand up too quickly after a long period sitting or lying down.
I also felt like someone had hit me very hard over the head!
I described it to a friend as "my brain has gone on
holiday but forgotten to take me with it".
The easiest thing to do was to go to sleep so I did
lots of that!
I don't mind admitting that I was scared. At times
I really didn't think I should be on my own. Fortunately for me,
this flare did not last too long and with lots of sleep, resting
(I couldn't have done much else!) and some steroids, I started to
see an improvement and after a month was back to my usual self.
It doesn't last forever and that is a huge relief!
Want to discuss
anything covered in Butterfly News? Maybe you just want to talk
to others who have lupus, or feel you can offer support. Visit our
message boards at -
http://www.uklupus.co.uk/cgi-
bin/ikonboard//ikonboard.cgi
Butterfly News
© 2001 Joanne Forshaw
Must not be reprinted in any way without prior permission from the
author. Any queries or suggestions - [email protected]
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