So, I have not actually written much since I went elsewhere.  I had a bunch of posts that I had written ahead of time in case I was just too tired on other weeks to post and I’ve used these for the past few weeks. It means there is about three months of decline in between the posts and with some changes.

I see clearly now that I began this blog as a place to process my diagnosis but more than that it has been a place to put my fears and my frustrations.  Some of my first posts are frankly quite dark but that is because the beginning of the journey is always a bit dark.  You often have to go to the dark place in order to find your way back to the light again.

I really thought that I had done my grieving, I felt I had reached a place of peace with the diagnosis but the past few months have brought up new set of stuff that needs to be grieved.

I am just unable to do what I used to do; my world has shrunk … again.  It has slowly gotten smaller and smaller with time but I am in this new place, I’m on a precipice.  I have days where I cannot tell you what I did.  I check my whiteboard and can see that I did this or that and I will sometimes have glimpses of memory of the event but often the details are lost to me.  On other days I remember everything that is said and done and I can keep up with you easily.  It must be very confusing for those who are still trying to have a relationship with me, they never know which Rachel they are going to encounter and I doubt they can tell from interacting with me if I am actually present or not. 

So, my new grief is one I was not expecting - I’m grieving the loss of myself and I am worried about what is going to happen to this new Rachel.  She is not resilient and she can be very anxious about the smallest things. 

I’m sitting perched between two Rachel’s and I can now glimpse what it’s like to be the next Rachel and it’s all just a bit sad.  She wants desperately to join in with people and to be part of the conversation but on many occasions, she simply cannot keep up.  She does a jolly good impression of a normal human however and I have nodding and agreeing with people down to a fine art.  I can see how easily someone like me would happily hand over their money to someone else if they sounded like they knew what they were doing, I am so aware that I should not be allowed to be in charge of anything but I do really like still being part of any team that will have me.  In short, I am slowly turning back into a child and I am just grateful daily that I have surrounded myself with friends who I believe will love whichever Rachel turns up on any given day. 

I do things in two-hour stints and then I need to go back to the only place that is comfortable which is my bed.  I have set up the bedroom so that I have everything I need and you really can rule the world from its confines - Florence Nightingale certainly managed it!  Writing continues to be my main form of therapy and I have begun to notice aphasia with my written words and I know that means that speech is not far behind.

Thankfully we have predictive text. I used to hate predictive text; it often chose a word that I didn’t mean but now I adore it.  I can’t promise perfect posts going forward but I will do my very best.

In the midst of the storm my soul and spirit continue to thrive.  They are what I still have left of me and my only real plan is to try and wring as much as I can out of each day.  Some days there is not a lot to wring and others there is too much, it’s life - it keeps on coming whether we are ready for it or not. 

Whatever today holds for you please remember that the most important thing is YOU.  You cannot control what others do or say to you but you can control your own response.  When they go low, choose high.