Is it just a bad day = or have I gone down to a different place.

[shelagh]

Dashed up to the bathroom while a friend made himself comfortable and then came into the room and was surprised to see him there. I'd completely forgotten. Went to the fridge to get butter and came out with milk,Forgotton what the other mistake was, but know it was significant.All within about half an hour
Friends and family say ' Oh I do that all the time - but they don't. Not time after time every day.Sometimes TP seems the only place in the world where people don't try and dismiss it. So thank you. But oh I need a hug.

 

[CaPattinson]

Oh Shelagh, they don't know do they. Only if they are made aware, but maybe not even then, wish I could help, wish I could give you a real hug!
Here is what I can do. I can understand and send you love and virtual hugs, hope it helps a little xxxxxx

​

 

[Skye]

Shelagh, sending you a huge hug.

I'm afraid I too do things like opening cupboards and forgetting what I'm looking for, but it's not the same, is it? With me, it's stress and (shhhhh, maybe I'm getting old!)

If I knew I had a serious illness, it would be far more worrying, and I do understand.

Take care, Shelagh, we all care about you here.

Love,

 

[miss cool]

Hi Shelagh yes i know what you mean, people use to say that to me all the time. its very thoughtless of them. if only they new what its like. but i seem to of had this illness for so long i couldent give o b%&$** about it now. unfortunetly you will allso get use to people being thoughtless its all part and parcel of it, its not fare or rite but life as i see it.
love miss cool.xxxxxxxx

 

[Barry]

Hi Shelagh

I know this problem well myself… you do something, or go to do something… but within seconds you’ve forgotten what it was you were going to do or done… such is this terrible illness, but if there is one thing that drives me mad its when other people who don’t have our illness say things like: (“Oh” I know just how you feel) when the true is (they don’t have a clue) what its like ‘Living with Dementia’ and your right… without such friends on TP we would all be lost in the “Dementia/Alzheimer’s wilderness”

Barry

 

[scarletpauline]

Yes, people do mean well when they say it happens to them all the time, it does to a lesser extent. But it must be devastating to Alzheimer's sufferers when they realise it's happened. I am sending you lots of hugs, love Pauline xxxx

 

[Grannie G]

Dear Shelagh

The only word which gave me a clue to what might have happened is the first word , in your post, `dashed`

I used to notice with Dhiren , any pressure, such as being in a rush , or being tired, increased his confusion.

Could it be the same for you?

I do hope it was just a bad day Shelagh. It might help if you are able to pace yourself, I don`t know. Perhaps.

Love xx

 

[miss cool]

Yes Sylvia you are rite if you tell me to rush i just stand still its inposable to rust .as for paniking i just cant. if i have to catch a bus i am ready about 20mins befor i have to leave. funny old illness init. love miss cool.xxxxxxx

 

[shelagh]

Yes, I'm learning slowly tht slowly is the only way. But as my b.... consultant said to Paul last time we saw him. 'what you have to realise Mr Robinson is that SHE is incapable of learning anymore and you just have to learn to accept that/ SHE almost kicked him on the shins and wanted to say in my grandmothers reproving voice 'SHE's the cat's mother' but he would have probably have taken that as another example of my failing capacity

 

[Lynne]

Hi Shelagh

Just popping in with a <<<Hug>>> for you , and a "Tut!" for your stupid Consultant

For what they may be worth, my thoughts were the same as Sylvia's re. dashing about and being under pressure making things worse.

 

[parkerdart]

Hi Shelagh-

First will apologize because my words do not come out very great now on some days (this being one)so hope can be understood. Just wanted to be sharing what a nice cognitive therapist that was working with me said I should always be remembering every day. Is somewhat lengthy but it helps me much and I hope it will you also.

* It is ok to ask for people to slow down their talking. It is ok to say I am sorry but I have a brain disease that doesn't let me process things as fast as you so it would be helping to me if you don't mind, slowing down just a little. She says people will understand that! (found some don't but oh well on them)

* I can't process info great when in stressful spots. Try to avoid stressful spots altogether and if I can't, say I am sorry but this isn't a spot I can be in right now and can we deal with this later. REMEMBER that if I don't I could say a thing I don't want to or that can hurt someone. My filter comes off me and I get angry easy now. She says it is like in fight or flight - I should flight for my good feeling later about me and to not be hurtful which has never been like me before. She doesn't want me to be in a fight position because of bad things stress can do to me.

* If I can be around less people at a time, I will be able to participate more without getting as confused like with more people. Not always a possible but is better for me to not feel bad about what I can't do now. I try to avoid big groups - even family.

* Try to realize when I get up how I think my brain is doing. Some days may be better than other days if I sleep better, do not have more stress on me and many other things. If not a good day, be nice to myself by not trying to figure out so much to frustrate myself. If tomorrow is a better day for my brain, I can do more things then.

* ALWAYS be nice to myself because this brain thing isn't my fault no matter whatever people say or how they act to me.

Not always easy to do all of these, but most days I remember to read this in the morning and try my best. That is all I think any of us that are "afflicted" (never know how to reference this disease on myself) can do.

Sorry again for long reply but helps me and I so do hope it helps you and others also. Have a Blessed day. Vickie

 

[shelagh]

Thanks Vickie, All those things are good for me too but I don't always remember them. It's a good idea to re read them every day so hopefully they will stick - for a while longer anyway. I do agree that it is better to be open about where we are with this illness and how it can affect us so that others can help us - if they will. And I agree, not eveyone does.
I regularly go to a residential college where the staff who know all about my illness are wonderful. They always give me the same room in a place that is easy to find and at the end of the day at bedtime someone always finds me to make sure I know where to go, It's always done so gently and without fuss and I feel so safe. So I'm so glad they all know.
Lots of love
Shelagh

 

[creativesarah]

thats really nice about the college what do you do there?
Lots of people dont understand I guess thats life we just have to make the best of a bad job

 

[KenC]

Its when we read threads like this that we realise that we are not alone when things go wrong.

This week has been completely horrible for me, and I got to the stage where I honestly did not want to go on.
One day I had been listening to a piece of classical music which
I have heard on many occasions and really enjoyed. But this day something went wrong as the music did something which got me rattled and I took it out on my dear wife, who did not understand what was happening.

To this day I don't understand what it was, but it caused so much distress that I told my wife to throw it out, just in case I put it back on again. Since then I have had to review the music on my MP3 player, so that it does not happen again.

I now wonder what caused this, was it the rythm, or was it simply something in my brain on this occassion.

Today has been a lot better and we managed to go out for a meal at lunch time, something that made me a lot happier.

This illness drives us all potty at times so I am not alone.

Ken

 

[piedwarbler]

Just sending you a hug Shelagh and sorry today has not gone so well, hope tomorrow is better x

 

[elaine n]

thank you

To all you people who have this awful disease and post here! for those of us who are carers, who hope to do our best and struggle to understand how it feels for our loved ones it's invaluable to read what you post xxxxxe