Its been a bit of a rough ride of late.
Another hospital visit amongst the many to the point we have lost count. Another day on the road driving to and from Bristol (roughly 4 hours on the road isn't too bad but is still a long day when you factor in hospital waiting times and the actual appointments)
Except this time, this appointment was to get some answers and a clearer direction on where to go and what will happen.
Do I get a Cochlear Implant?
What help can I get with the head trauma and going from disabled to even more disabled?
What happens now?
After a long wait and being lead into a room full of doctors, surgeons and specialist in various fields, I was told that they couldn't do anything for now and they would like to do more tests before making more decisions....not exactly what I wanted to hear.
I'm tried of hospitals, of life on the road and in waiting rooms, of being prodded, probed, tested, examined, injected, scanned, being made sick to see how I cope, wearing weird electrodes that measure brain activity....I could go on....
I 'm just so tired. We all being slogging on this journey in the hope for answers at the end of the tunnel....only to find there wasn't. They cant do much more at the moment and I have to continue onwards with no help or support.
What more, being told I now needed to move on and I had to think what I am to do with my life just added to the frustration and the incredible loneliness. You could have companions that travel the hard road with you but you are still alone at the end of the day.
How can you know what to do with the one life you have? I had plans that never happened for various reasons, events that derail and improved me, things that I thought I would like that I ended up hating and vice versa....you can plot your life curse as much as you want...the tide is never always in your favour and the seas of life are changeable.
Right now, I know I want a break from hospitals and chasing my health and disability.
I know that eventually I need to look into a small dog to help me a little with my life...I cannot afford a hearing dog and the waiting lists take forever when I'm struggling now.
I need to learn to enjoy my own company and love myself a little more and be more calm and at one with myself.
I want to now look to travel roads of my own choosing, destinations that I actually want to go to and explore the more pleasurable side of life.
I haven't got a map...but dammit, I will draw one up as I explore more and more and plot my own roads!
It was a long enough day and after tears were shed and the reality that the help I need is so slow to come and being deaf with a newly discovered mental disorder is so isolating and hard enough....what can you?
I tell you what I did...
...bought 32 cookies from a little cookie shop! (I had some great value coupons and hardly paid very much in the end!)
We ate cookies on the road home, for breakfast the next day when so exhausted....they were our fuel food!
It was a one-off guilty pleasure moment we needed!
The days that followed, I was in auto-pilot somewhat.
I enjoyed a BBQ that night after getting home from a long day. Maybe a drink or two didn't help as it just made the situation more real and depressing and I just wanted out and quietly snuck off, walking home to try and ignore the burn in my throat of hot tears and that feeling in your stomach when life just dealt you another blow too many.
It was nice however to see a friend gain closure at the BBQ, to see 10 years of pain and confusion for him come to an end somewhat and he could now be at peace and move on after what must have been an awful break-up for him. All it took was "I'm sorry". It was enough and it was nice to hear and even better to see a weight lifted from his mind and shoulders.
Right now, I just been getting my head down a bit. Chores are being done, DIY is slowly underway, life's laundry in a sense is being sorted through and dealt with. I'm listening a little to the little voice inside me telling me, "Go slow, please go gentle and just do things that need to be done and seek pleasure in them. You need this right now."
The simple things in life is ok right now for me.I want to actually enjoy a moment of success instead of looking for the next thing.
Just started on a DIY project with these embroidery hoops, you shall be seeing the end result soon...I'm pretty pleased with it! I just did it instead of wondering what it would be like, I now know what it is actually like!
Where do I go now?
I do not know
But right now, I will use this time to rest, enjoy the days for what they are, discover myself in the mundane and simple moments that needs to be done and experienced, and see from there.
I need to see what I am about, what I enjoy and want and essentially learn who I am and how to help and embrace me.
How are you doing?
How did you feel and cope when you came to crossroads in life?