I've been trying to simplify a way of packing for a holiday. Every time I pack an item, I forget I've packed it and have to continually unpack and repack and check again. The memory loss is at the root of it and no matter how many times I pack I have to check again.
I drew up a table on Open Office with three columns. On the left is the item to be packed, in the next column I tick whether I have found it and got it ready for packing, that is on the floor ready to pack and in the final column on the right whether I have actually packed it.
Even with this I'm not sure I have found the best method. I am tempted to just stick to my daily routine and not contemplate any changes or alterations.
First Lanzaprazole after half an hour, Corn Flakes with milk and sugar, toast and tea.
Next a dozen pills then more tea and then check the news on the internet. As I'm retired no cycle ride through the town rush hour to my work.
Draw back the curtains, raise the blind (I'm now light sensitive) and greet the day. Soon it is time for more pills. I'm alright considering, I could have died in intensive care and here I am. Phew!
Best Wishes to all.
G2
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Gandalf2
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I have to use written lists and actually cross each item off when I’ve done it. That helps with my anxiety and fixation, but not always. Honestly, my sister usually just ends up doing it for me if it’s stressing me out too much.
The table/list sounds like a good idea. I haven’t managed to travel far from home since having encephalitis but if I do go away for a few days I write a list of essentials at the top (mostly medicines, cash/cards and things like travel bands and sunscreen) and then normal items underneath this like each piece of clothing.
Because I am similar to you and doubt whether I have actually packed them (even though I tick them with a pencil so that I can erase it if I took the item back out) I pack on the morning before leaving to minimise the amount of checking I will do so maybe see if that helps or do it in stages? I also make sure the essentials are separate in my handbag - worst case scenario of forgetting the rest of the bags, it still means I will always have my medicine, cash and phone on me and can just make do with that and buy any necessities.
I’m sending positive vibes for your holiday and hope it is lovely
Thank you for your post. I guess I can say 'I've forgotten my memory' or 'I can't remember when I started to forget things'.....
We're having a nice break, sun and showers. I have to avoid the sun as I am light sensitive, especially in my left eye which has had a recent operation to remove cataracts and restore my epiretinal membrane. I have to wear an eye patch if I go outdoors.
In encounters with the public I have to try to ensure I follow normal social rules and etiquette. That's one of the Enc after effects/symptoms, I've forgotten them; should I hold doors open for people? Is it OK to say 'Hello everybody' when entering a lift (elevator)? Am I disabled enough to claim the disabled seat on public transport? What are the rules and taboos? I'll just have to muddle through.
I entered a shop in Filey and the gentleman asistant said "Good afternoon, how do you do?". I'd forgotten the correct response of "Good afternoon, I'm very well thank you, how are you" I just carried on and asked for something in the window - a Grenadier Guards keyfob. It was a successful purchase but another reminder of my condition. I need a rest. Best Wishes G2
Thank you, that is useful. We're doing some of those things but some extra ones will be very useful. It's good to see clinical support for things we do as well. Best Wishes and Happy Christmas. G2
I have a Master List that’s the one with all ‘can’t be without’ things. Then another clothes list. Then one for washing stuff. Etc. I know I’m so lucky to have regained lots of my memory but lists are now my friends!!! Have a great break and whatever you’ve forgotten you won’t need!!
I have never had memory loss, but if I'm watching telly I have "delayed memory ", recognising new faces and those who changed their appearance since I last saw them, or if I'm talking and I get interrupted mid flow I can sometimes forget so that's only a tiny bit of my memory if anything and I think it's probably similar to that of the average person though isn't it?
However, I record things and rewatch them several times and on my own so I don't get interrupted otherwise I have to rewind it then watch it from before that happened, and the other thing is, I'm good at recognising new voices so I try to pay attention to them.
In other words use the abilities we do have that can sometimes take ove,r to make up for the damage we have had after 'E' if that makes sense.
I never had a life pre encephalitis so I can't talk about stuff like that unfortunately like other people on here, so whenever I see posts about that topic I read them but can't really say much on that topic.
My main after effects are my processing speed, attention span, disinhibition, OCD, clinical depression, anxiety. Apparently when I first had encephalitis I was diagnosed with Status Epilepticus at the same time the day after my first birthday, but I have been free for 29 years I still take 2 medications for it.
I take Pantoprazole now for my acid reflux, after coming off Lansoprazole I was taking for 11 years, so now I've been referred to the Gastrologist, and I have to wait to hear from them, so I can at least relate to a medication you take if nowt else. I'm fortunate in the sense I only need 5 medications in total now, one for my OCD called Escitalopram and because of my disabling OCD I'm housebound so I have to take vitamin D3. What are the dozens of pills you take for if you don't mind me asking?
Another thing is, I use sweetener rather than sugar, I have been doing this for ooh about 20 years now (when I became a pescatarian) I like the Silver Spoon brand if that interests you.
When you talk about you no need to cycle to your work, what did you used to do?
I suppose we all could have died in hospital when we had encephalitis but depending on when we had it equals whether or not we recall getting it in the first place (I certainly don't recall having it) like other guys here, so I 've never really given it a thought.
We all only remember from the age of at least 2 or 3 nothing before that, this also includes people who never had it as well.
It's what we do with the life God gave us. To make the best of the life we have that's most important and try to think of that as a positive.
Whether or not this is a good or a bad thing, but this is the only life I ever knew.
Hi Paula, that's a lot of info but I'll do my best to reply. My Enc. started about 3 years ago - so I had an active life before that. I'm doing my best to piece things back together.
My comment ' As I'm retired no cycle ride through the town rush hour to my work.' is pretty badly written and just meant to say that now I am retired I can instead turn over in bed, look out of the window, check my mail etc. but no longer have to negotiate the rush hour traffic on my bike. (I used to teach secondary pupils Design and Technology and lasted for20 years.)
Cycling was a great buzz especially when going along at 30 mph downhill in traffic. I'm now forbidden from any risky enterprise apart from putting out the wheelie bins. Now and again we get out onto the nearby moors and hills, unless the weather forecast is pretty bad.
It's forecast heavy rain, thunder and lightning today, but of course it's turned out dry and calm.
Like you I too have status epilepticus and as you will know it can be fatal unless fast action is taken. Thankfully the ambulance men have arrived very quickly and have known what to do to slow down my brain activity. In hospital I went onto Intensive Care and was put in an induced coma for three days.
My anti-seizure meds have it under control now, I haven't been taking them for as long as you but losing my meds, having them stolen, being in hospital with medics who aren't aware of my prescription are all a worry. No more aeroplane flights to foreign lands. I have a wrist alarm that alerts me to medicine times and a carousel device that deals out the tablets. That's probably enough info, sorry if I've drifted off or gone on too long.
I had the same problem ,now much better though. I would think I needed to do something, go to do it, and find I already had. I found a great 'To Do' App having tried several. 'Easy notes' on Android. It allows you to make multiple lists, shuffle items, tick them off as done and then have them remain in place, drop to the bottom or disappear when done. Its helped me not to forget things tremendously.
I usually put everything I need to pack on the floor in order. I only pack at the last minute when I finally need to move or get out the door. I use a lot of post it where I write what I need and stick it next to organised things if something is missing. My partner uses a lot of lists on is mobile phone. He use those lists for everything. It’s rather clever, he doesn’t have to carry the burden of remembering details or things he has to remember.
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