Well That didn’t last long. I said I would blog everyday and it only lasted a week. Thats the huge problem with memory loss is you forget things. I have been staring at a note on my message board saying ‘Update Blog’ For ages I was thinking I don’t have a blog, why or what am I updating?
It was only today that I remember that I said I would update this everyday for my new years resolution. Reading back on my last posts I not sure why I came up with the idea of updating it in the first place. I have however come up with another idea which does not involve this blog. I thought last night why don’t people come with instruction manuals? It would be so much easier if we did. This gave me the idea that I don’t come with a manual so I thinking maybe I should write one for myself. Like most ideas in my head it comes with a load more questions like, Who will read it, is it possible to write a manual even for someone like me who likes so much to happen in the same way, or will this then cause me to get even more confused because I can not change what is in the manual? Even given the simplest tasks like making a cup of tea. How many sugars do I want? is their any need to put this in? Once in the manual it means rewriting it if I change my mind one day. These are the most stupid questions that bog my head down with questions. I lose hours of sleep because I asking myself these questions.
At the end of the day I normally come up with the answer “whats the point?” It is so hard for me to really get focused into someone when I have time to myself.
Downloaded the WordPress Mobile app today. Hopefully I can post things when I think of them rather than taking notes over the day and trying to decipher them later.. I haven’t really decided where my website/journals are going apart from recording information for later. I have been doing this for a while privately and do find some things interesting to read back.
I hoping to help others understand what one can achieve given the opportunity. Knowing the correct way to help someone is very rewarding for both people.. This is something I know all too well at work.
Further to my post from yesterday I wanted to write a little bit today about how I plan my tasks for myself and my carers to do so nothing gets missed. I have made up an activities chart to help when tasks need to be done and when they where done last. Here is an example of a week. I have found out today that I will have no lunch tomorrow because someone has used all my sandwich fillings and not told me. I have some soup in the cupboard so just thought nothing of it. However due to my left side weakness I use a special bowl with handle on it to take hot things out of the microwave. I don’t really like to use the microwave at work because I am worried I will drop a hot dish. I have been better since I use my special bowl and all my carers know this, I have just found out that someone has decided to put it in the freezer with something in it. I have no idea what despite telling my carers I need everything labeled with dates on when it goes in the freezer. Whats more is the dish is not freezer safe so is likely to break when I try and thaw whatever is in it, as this is what happen to my last bowl.
What worries me the most is despite having this activities chart I am still told that I have been mistake and the task was not on the chart to do. I am What the hell? How can that be the case when it is there now? I am more than now worried that I can not ask people to help me to do things without being told I haven’t asked when I am 100% sure I have. After all my carers know I go to work 3 days a week so why would I not need food for those 3 days? To say I didn’t ask is just plain silly. I really hate having to plan my week in advance as I can not choose what I want on the day but also understand that I don’t have the understanding to do this myself and I didn’t think that my food plan below could be anymore clearer…?
I have huge doubts in my head if I am doing the write thing. How many systems can I put in place to stop me from going without food? Noticing how small my meal was this evening. I looked in the fridge only to find half of it in there. No idea why considering I told my carer not to bother about lunch tomorrow as I will buy a sandwich. Plus considering the food as been cooked, frozen, recooked and put in fridge I am pretty sure I not allowed to reheat it again and with no information on what to do so I don’t think I have a choice but to thrown it in the bin or have cold chicken and pasta tomorrow. Considering I had a poorly stomach on Sunday I don’t really want to do this.
Losing the ability to remember stuff is scary enough without being told you have made a mistake when you know you haven’t. I even tried to consider that maybe I have, hence my reason for acknowledging that and to say I will buy lunch myself. Not really practical when all I get £10 a week onto my benefits and £2 goes towards a lunch and maybe £3 on petrol. I enjoy work and it gets me out of the house. Things like this do not help.
Totally forgotten why I am even saying this now apart from it was written on my bedroom mirror as reminder so I must have had a reason to remind myself that I wanted to record this event for later.. Thats the whole thing is no matter what reminders you put down for yourself unless you have a reason for it they seem pretty pointless.
I often hear people talk about the dislike returning back to work after a seasonal break, for me I quite enjoy the routine of returning to work. I found it hard and by lunch time I was struggling with pain levels caused by my Cerebral Palsy but I knew if I kept myself busy and ignore them they would go away. Before I knew what time it was, there was a quick sharp vibrate on my wrist from my fitbit alarm, to tell me it was time to head home. I find time a strange concept and without the reminders like a clock I wondered just how one perceives time. Being Dyspraxic I am a poor manager of my own time so I love to use tech to help me plan tasks with reminders from my phone. Another thing I will do is use my fitbit tracker to limit the amount of exercise/walking I do. So when it notified me that I had done 5000 steps today already I could be forgiven for being in pain as I know that 5000 steps about 2 miles is my limit over the day.
I have a slight concern that I am not going to be able to retain enough memories over the day to help me to write these journals. This wasn’t helped by coming home and my carers confusing me about tasks they haven’t done over the christmas break, saying that I must have remembered them incorrectly. When you are so sure that something in your head has happened and someone tells you that it hasn’t it questions your memory and makes you even more confused. I have a very good care plan because of this so when mistakes happen I wonder if my care plan is working. It also makes me slightly scared to change anything from my normal routine as I know things will not be picked up like they haven’t today. my own view is it really doesn’t matter but people get really defensive when you tell them they are wrong.
I have started to make connections to the people I believe I once had a connection to. Some I not sure about as I don’t have much history to go on but puzzled how they knew me and what relationship I had with them.
There also seems to be a group of people who seem to know me well but I don’t know why I would have had them as a friend in the first place, all they seem to do is want something from me and I just wonder what I get out of the friendship.
Making Sunday evenings my time to reflect on the week pass. I find that strange to do as sometimes I have no idea what has happen over the last week so reflecting on it could prove to be difficult but writing this down could make it easier for me to understand my pass. Time will tell I guess.
For 2016 I am going to try and write my thoughts down. Looking over the last few years my facebook statuses have been quite depressing. I Haven’t liked them at all.. The overwhelming theme to them has been one of despair and lack of understanding of what is happening around me. I find the world a confusing place, one I can not understand and struggle to fit in. I don’t want to feel this lost but without the knowledge to understand why things don’t change the only thing I have considered is to write about them in the hope someone sees that I’m trying my hardest and want to be a part of my life.
I have many skills but interacting with people is not one of them. Sadly this leaves me quite isolated in my own home. I don’t mind being at home on myself most of the time as I know by going out I am having to process so much information. I have learnt over the last few years that I should not force things and just leave to whatever happens to happen. Strange thing about that is that I can go days and days without anyone engaging with me on a personal level. I think this can make it hard to make choices as I don’t have a reference point to fall back on, or anyone to talk to. Most of my friends live quite a distance from me and I am only ever words on the screen to them as they don’t see all the times I am here feeling lost. I see that from looking back over things I don’t either. Let me explain what I mean. Until recently I never knew I had memory loss and these gaps in my memory maybe brought on by epilepsy. I sometimes get glimpses into my pass and is the primary reason for starting this journal. I have had personal journals in the pass but normally I have forgotten where I have kept them and sometimes I will stumble across it when looking for things on my computer. I also think that if I make these thoughts public I will be more likely to write something. Before I have been thinking to myself what is the point? I will only forget and you can not change the pass so maybe it is best that I do forget?
I have looked at many journals and video blogs online before, they seem to have a theme about them. This could be from coming out to talking about a disability to just talking about life at school or work. This seems to be what drives people to write about stuff. I am not sure I have the confidence to do a video blog but who knows and this may give me a platform to do that. The driving force in my life has to be to help others. My main activity for this at the moment is my part time role for a charity that makes equipment for disabled children called MERU I first found out about this charity when I was a little boy at the age of 8 years old.. It became my ambition to become an engineer.
Until I find some direction to this website a lot of what I post will be about work or just random stuff I find online that I may think other people will find interesting. If you enjoying reading what I post then do feel free to comment or write to me.
Happy New Year to you all