My birthday couldn’t of been more wonderful. Wales never lets me down not matter when we go, I think it Is part of the magic of the country. I had time to relax, away from the country that held all of my stress giving me a chance to look at it from the outside. It also meant a lot spending some time with my other half without any distractions. To say it was needed would be an understatement. Feeling refreshed and recharged we returned home where I spent a week asleep, and recovering. It isn’t like I “over did it” after all we didn’t climb any mountains. We just went to the beach a couple of times and had a walk around Caernarfon. I didn’t think I had pushed myself too far until I woke up wondering where the hell my week had gone and how was it the weekend again already?
I have once again hit the problem that rules my life. The lack of agreement between my brain and my body. Today marks the 5th anniversary of my diagnosis and I, like those around me, still haven’t got use to the idea that I am chronically ill, disabled, and with no chance of ever getting better. I didn’t think that it would take much to adapt my life, but here we are years into it and I am still not there. Internal ableism from my up bringing and society in general, mixed with every one else’s really is having an unhealthy impact on my life. I can, and have been addressing my own but so far it hasn’t mattered how much I try to educate others my voice simply isn’t heard.
I am not sure how to make others want to listen and learn. It is their choice of course, even when it is me who seems to get forgotten about in the mean time.
There is only so much I can do for myself, I crave for the independence I once had and the will power to do anything I put my mind to. I am really struggling with the latter because I have so many plans, things I want to get done, to achieve, to be, yet I have no idea how I am going to do any of it with an unreliable body that only lets me get the basics done.
You see my brain wants to spend a week working and sorting through the house getting it back on track to where it is more manageable, all I can get done is the basics (sometimes not even that) before I have to head back to bed to sleep for a few more hours. So I keep going around in this circle of being strong willed, with ambition, and dreams whilst having a body that goes “no, not today brain, not today and possibly not tomorrow either.
I have made a start on my bedroom though. I have decided to do it bit by bit and to start off with the rooms I use the most. So of course I am starting with the bedroom. I will be vlogging it for the simple reason that it settles my mind from worrying about not working. This way it is both. I don’t like the idea of planning things any more because thing never go to plan and then that frustrates me even more when it doesn’t work out, and now I know I am repeating the brain mush from previous posts, so I will leave it there for now. I still have a “plan of action” if you can call it that, I sill have the dreams and goals in life, and my brain isn’t willing to let me settle in life any more.
Are you disabled or chronically ill? How do you cope with the battle between body and brain? All the advice and feedback is welcome as I have found that advice from people who have had or are going through the same thing invaluable