Happy New Year
There are a few things I’d like to do this year.
I want to get on with my life and not live in fear.
I’d like a man in a white coat to drill into my brain.
after he has shaved my head so that I can be ‘me’ again.
I want to write poems filling page after page.
Wear a sparkly dress then perform them on the stage.
I want to sing karaoke with my man in the chapeau.
Dance like everyone’s watching boogie, sway and pogo.
I’d like to spend time with friends having a laugh and a good time.
Holiday with my girls. I just want everything to be fine.
This poem isn’t the greatest. one I’ve ever writ.
I’m impatient to live my life.I just want to get on with it.
1 January 2021
‘They’ say we should be careful what we wish for. Well sod you ‘they’ I would be very happy if I got what I wished for this year.
This pandemic thing is getting in the way of everything. On borrowed time anyway (as we all are, it’s just that those with a disease/wake up call, have had it shoved in their face). To say I feel sorry for those who haven’t had a wake up call would be a bit ridick. I would give (almost) anything not to have Parkinson’s Disease. But it has certainly made me all to aware that we have to live our lives now …
Well Covid lockdown restrictions has put ‘our lives on hold’
Or has it (dot dot dot)
Now the rest of this blog post could be a bit random as I am writing as I am thinking what to write, so no plan of action …. dangerous.
Okay ‘Covid lockdown restrictions has put our life on hold’ … discuss. This should be rewritten as ‘Covid lockdown restrictions has put ‘life as we knew it’ on hold’.
If it had actually literally put ‘our life on hold’, we would be in suspended animation for the duration of lockdown, not ageing or wrinkling at all, we would emerge from lockdown the same age, height, and in the same clothes as we went in.
So I feel the need to re write that phrase … ‘Covid lockdown restrictions has made us rethink how we live our lives’.
We have had to think outside the box … how to maintain relationships when not seeing friends and relatives, how to carry on learning when schools are shut, etc etc.
Now don’t get me wrong I am not happy with this, not ‘ appy at all Mr ‘iggins’.
Since lockdown begun I have …
Got engaged …oooo
Am in the process of moving house …. ooo
Trying to keep Crohns under control
Trying to keep hospital appointments for prospective possible brain op later this year
Now lets address these one at a time.
Crohns – is kicking off something chronic (bit of a joke as it, like PD, is a chronic disease – whoop if i get three I get a cuddly penguin). Alcohol seems to cause it a lot of problems as does stealing Mr J’s twirls (that is what it sounds like). So no gin and no sneaky chocolate. To be serious for a mo I am (mainly honestly) very good and will be punished by The Crohn if I have a sneaky twirl so it is just not worth it. ‘They’ are looking at escalating my medication which is to be honest mighty crap … Parkinson’s, to me, takes over so much of my day to day life that for me it is my priority to keep those symptoms under control just to live my life. However, I have now realised that I need to pay the same attention to Crohns. This is yet another Chronic Condition which tbh at the moment is starting to affect me more and more. I need to give it some priority and get it under control.
Parkinson’s has reached a pivotal point. Side affects from meds are getting worse and the Three M’s (movement, mood, motivation) are swinging between being maddingly happy, madly moving and annoyingly motivational to being moody, morose and motionless. Dystonia stops me in my tracks often using a wheelchair to scoot round the flat.
So my Neurologist is putting me on the list for Deep brain stimulation … DBS … basically this year i hope to have my head shaved and electrodes implanted in my brain.
Sooo ho ho … not a good time with that Covid thingy to be going to hospitals, but i need to and i have to take appointments between lockdowns.
I need a Blood test to assess my crohns situation
I need a series of assessments for DBS
Flip so watch this space i have already had one dbs assessment and am awaiting another three.
So important are these i need to write a separate blog …so i will tell you another time
Keep safe, keep well, keep on rockin