Here is the last of the posts talking about some of the issues that I am currently dealing with. Please remember these are simply my writings about my personal experience from my journals if anything in this raises concerns for you please see your dr or a medical professional for help.
The first two I dealt with the easier of the four major issues I am living with (though they might be easier to describe they are not necessarily easier to live with.) The last post dealt with Functional Neurological Symptom Disorder and it’s affect on me and the family, this post will deal with the memory and other cognitive issues that I am currently dealing with on a day to day basis.
Let’s be honest here, the memory issues are probably the ones that everyone is most curious about. So, I will make you wait just a teeny, tiny bit longer deal with the other ones first. Every day is exhausting for me mentally (which often translates to physical exhaustion) because everything that I once did naturally seems to take so much longer and be that much harder to acheive. This is partly because of the memory, but I also have problems planning, thinking, concentrating, writing, even talking and listening is all really hard work for me.
Sure for many people planning, thinking, concentration, processing, attention spans, writing, talking, listening issues are part of day to day life. But for me in the before I used to do these things without having to think about every part of the process. Imagine having to think about how to think every day, then add in I have to think about how to walk, how to use my left arm, how to put on a sock, or shoe, even how to dress myself. This is exhausting (yeap I know I am saying that a LOT!) but there really isn’t any other word to use. The planning is even more frustrating for me especially when I am trying to write every day but the thoughts that are in my head feel like a huge jumble and to get them onto the page in any meaningful way is hard work. This makes me really sad. I understand that these posts read fairly well (I’m hoping anyway,) and they kind of have a start, middle and end what you can’t see is all the screwed up pieces of paper that I have here from me writing words down and trying to organise that into something that makes sense to me. Not only that but planning is something that we use every day without realising it, for most people this comes naturally now for me I have to write every single thing down and if I don’t I honestly don’t know what is going on.
So when you then add in that I am having trouble concentrating and my attention span is that of a gnat it is easy to understand how talking and listening could also be issues. Obviously anyone who knows me well would be shocked to know that I am doing a lot of sitting and not really saying a lot, especially in group situations or where there is background noise. For me all of these things are just hugely frustrating and make me feel inadequate and want to hide even more, holding a conversation is hard work I need to listen carefully to follow what is going on and of course with the memory issues it is often hard to follow along because I simply have no idea what people are talking about so my attention just drifts away. At the moment when I am in a group situation of more than really about two people I just shut down because I just can’t follow conversations.
Not only do planning, concentration etc affect social situations and also activities of daily living but for me they are one of the huge barriers to me being able to drive I quite honestly cannot process the steps and information required to drive a car in fact I am hard pressed to work out how to unlock it! So actually driving one is just such a long way off right now! In addition to driving, writing and all the other things I have mentioned, all of these things are affecting all the things that I would normally do to fill my days like crochet, knit, or even cooking. These are the things I am missing most.
Now onto the topic that I have probably had the most messages and questions about because it is really very hard for everyone to get their head around. My memory. If I describe a typical morning for me I wake up and I feel quite panicked inside because my head feels exactly like a blank piece of paper, or an empty space, my darling husband has to as quickly and gently as possible fill in the big gaps in my head so that I don’t get a fright, I get information about the kids and how much bigger they are since the last time I think I saw them, I get told that we have dogs as cute as they are I just don’t remember them, this morning I was shocked to see a beard (clearly it’s been there a while but it’s new to me), he reminds me about the walking stick, reminds me that we have done renovations and that he has changed jobs. Imagine getting flooded with this information every morning and it slowly starts to fill in the emptiness in my head.
Terrifying is a word that springs to mind, then there is actually seeing the kids, dogs and trying to get moving for the day. Some many things feel unfamiliar in my house but clearly they are meant to be there because I am fairly confident in that my hubby is not up and building kitchens or bringing in new lounges or moving furniture in the night after I go to bed. Then my day continues I will read my journals which really fill in the blanks of the last few months and some major events that have happened in that time relating to the last few years but they don’t give me all the information. I don’t remember so many significant events that have happened in our lives, family holidays, Christmas, working, the worst part is that I don’t remember things I’ve done both good and bad.
I am sure that for some this might feel like a put on and that it just can’t be real but it truly is real and I would honestly give anything to have my memory back. To have no memory of things is frightening I can’t defend myself against anything and equally it is sad to not remember experiences that we have had as a family and with my friends. I am told that this is autobiographical memory loss and it is quite likely to be a protective mechanism that my brain is doing to stop me from thinking too much (at least that is what I have written down!) Essentially our brains do have a limited space for memory a lot like a computer and we are meant to process events and then move that memory from active, working memory to long term dealt with memory for the occasional recall, it is thought that I haven’t moved much of my memory into the long term memory and I have stored everything in the active working space until it could store no more.
Try living each day with no memory of the day before, then when you factor in the planning, concentrating, organisation, and then the physical walking and movement PLUS the depression and anxiety life is just a picnic for me and the family right now. I need constant reassurance that everything is ok and will be ok and that I am not going completely mad. I guess most people have seen the movie 50 first dates life for me is a lot like that only I don’t live the same day over and over (at least I don’t think I do!) Once I wake up and start to fill in the blanks whilst nothing feels right to me and it all feels like I am in a story or a movie and it is someone else’s life, I do remember it untill I go to sleep that night, but if I don’t write the events down then they just didn’t happen, we are not sure if the memories are being created and I just can’t recall them or if they are not being created at all on time will tell. The reality is that TRUST is central to my life right now which is frightening and also DEPENDENCE.
Trust is a hard thing at the best of times even when you are fully aware of everything and what I know is that in the last few years (and when I say know I really mean what I have read in my journals and what I am told during each day – because there is actually anything from the last few years that I KNOW as fact), that I have broken the trust of those who love me in various different ways. The hard part of this is that even though I accept as fact the things I am being told as I simply have no basis to not accept them and I have in as many ways as I can and most likely every time I find out again what I have done apologise over and over, until I can have some form of daily continuity it is incredibly difficult to rebuild that trust, though I hope that in some small way I am doing that, even if I don’t remember hopefully those around me affected are seeing the things I do and remember. But for me on the other end of the trust I have to trust implicitly in every single person in my life, I have to trust that what my husband or friends or other family tell me is truth, I have to trust in the bus driver that arrives when I have to go to rehab, I have to trust in the OT or psych or physio you name it I am handing over my life completely to strangers and loved ones alike. This experience is simply terrifying, I have no idea from day to day if the person standing at the door is going to take me where I need to go but I trust!
Hand in hand with this comes dependence. I have a complete dependence on everyone around me for so many things. I rely on people telling me who they are and what is happening, it is terrible really I hate the feeling of dependence (well today I do and that is all I can base anything on!) I am much more used to being the person people depend on rather than the other way around. In addition to being dependent on others I am dependent on my writing and journals this is really something very new to me, I have always kept everything in my head and as such have rarely kept a diary, not only have I not kept a diary so much information about everything is stored in my head and for now it is just trapped there I hope it will come back.
Where to from here – we hope that in time that as other issues are dealt with that slowly the memories will float back in but when and if I will get all my memories back for now we just don’t know. All I can do is work through everything and trust in the process.
How can you help – if you want to visit or you have arranged a visit with me please send me a message letting me know that you are coming and just give me a prompt as to how I know you. Often messaging through fb is great because I can cheat and look at photos and try to link everything together. If you show up unannouced and I am looking at you completely blankly please just say hi it’s blah we know each other through blah it breaks the ice I won’t remember tomorrow so please don’t be embarrassed. Though pre-planned visits really are much better. Please remind me to write things down so that I can remember to tell my hubby especially if you give me important information. Most importantly please just be you, chat away to me come in make yourself at home, get yourself a cuppa and sit with me in time I am hoping I will get better but what better looks like we just don’t know.
Lastly, and most importantly thank you everyone who is supporting us in this journey, every single act of support for us is so very appreciated and we quite literally are overwhelmed by the community of people we have around us supporting us along the way. Thank you really doesn’t seem adequate know that even though I don’t remember it all it makes an incredible difference to our family and without each and everyone of you this journey would be so much harder.
P.S Sorry for the length of this!!! It has taken me days to write this!