“Illness is the night-side of life, a more onerous citizenship.
Everyone who is born holds dual citizenship, in the kingdom of the
well and the kingdom of the sick. Although we all prefer to use only
the good passport, sooner or later each of us is obliged, at least for
a spell, to identify ourselves of that other place.”
Told doc on Tuesday that I had pushed the boat out. Hence throat inflammation with antibiotics to take. Bummer. Hate taking them. Impact on my system always upsetting however throat ok Wednesday thank god. Must remember bigger picture. Any glitch or change I find scary. Been managing so well overall. Am surrounded by a great team of carers and helpers, family and friends included. so back to pushing boat out :movie at Mahon Point cinema with hubby on the Thursday. Romantic tragedy from Russia- Anna Karenina. A wonderful performance by Kiera Knightly but disappointed with Jude Law as aging husband. Was looking forward to a blast of his beauty!
Friday was writing last blog entry as well as catching up with one of my lovely sisters in law who visits regularly. So come six o’clock I was googley eyed! Saturday went cork shopping with hubs. Love looking and checking out shops. Fab favourite well known to my sister and friends is Noa Noa. Just love their colours fabric and cuts. Thank you Sheena for introducing me all those years ago! One outfit and fabulous scarf later we went home.
Saturday night is movie night at ours. So Kitty asks “are the durls coming over ‘? Love the way she asks about the girl friends like that. Sunday two long term lovely friends arrive laden with pressies from the big smoke! Thanks to motor way they can do round trip in one day. When they leave, then mum arrives, phew, even the thought of it all is tiring! So worth it though! Sunday night all calm again. But physical exertions can take toll on body and I got throat inflammation, but thankfully all ok now.
Today a technician came to fix my hoist. The hoist is used to get me up from bed or a chair and to stand up straight which I really enjoy. so for want of a better word the ‘knobs’ were off balance and he was checking them! My daughter, who I call Kitty, was up on the hoist playing around as kids of four do. Technical guy and Kitty were interacting away with each other. I asked if he had kids all the while amazed at how he was really listening patiently as the words popped up on my eye gaze computer. Lots of people pass through our door sometimes unsure of what to expect which is normal I suppose. Last tecchie just conversed with our last Spanish au-pair and ran! So today ‘s guy in answer to my question about kids said ‘i was hoping you wouldn’t ask me that ‘. He went on to tell me that he had two boys but they had died in the past few years. My god I thought as I broke out in goose bumps! So much suffering in this world. He continued to explain that they had spent their lives in and out of hospital due to some unpronounceable disease. Both were special needs and enjoyed soccer and usual ‘boy’ things. One was nineteen and the other twenty when they passed on. I saw photographs on his phone. Lovely looking lads. Unsure of how to react to this man with sparkly blue eyes I said I was sorry about his loss and offered him a tea. When I told him that two years ago I was walking, talking and doing usual things it was then he broke down in tears maybe at the unfairness of it all. Two years ago maybe I wouldn’t have felt the pure and utter compassion I was feeling at that moment. He then fixed the hoist and left.
By the way readers, interestingly enough the ‘stand in ‘ from last Saturday morning rang in sick on Sunday because she had fallen the previous night. so the lovely girl was back again. As my late dad would say in particular situations to make us laugh, ‘funny innit ‘!
This morning at ten the ladies came to get me up and shower me. This is a service much valued by me. These carers are friendly respectful and fun. Most have seen me travel down the most challenging road of my life, seen the changes last year when I could drive to the sea or collect my kids from school to no longer being able to walk or talk.
This disease most cruel has taken with it the use of my upper and lower limbs. It has also took my voice. Thanks to a great speech therapist along with the fantastic CRC [central remedial clinic] I have an eye gaze computer. No payment is necessary for this machine that has given me a voice. It’s invaluable. Writing with my eyes, I stare at a letter and it comes up on the screen. Yes, its amazing! There might not be a cure for MND yet but a big high five for those who created the eye gaze.
So, this morning a stand-in lady came. The other lady has been here from the start. Stand-in has been here before and to put it politely she wouldn’t be my favourite. I’m referred to as ‘she’, not by my name which is Emma. The most upsetting moment was when she said ‘shove her back there ‘ referring to me in a post shower state. It’s ignorance pure that makes a person speak like that to another. But I was horrified! I couldn’t even stand up for myself. Writing this is a vent thank god. But I will be making sure I don’t have the misfortune of working with this person again.
Here is a lovely quote my cousin Nickey shared with me:
“In dwelling, live close to the ground. In thinking, keep to the simple. In conflict, be fair and generous. In governing, don’t try to control. In work, do what you enjoy. In family life, be completely present.”