Recently, I have posted poems about a longterm relationship I had after I divorced.
The things I find difficult at present is the taste in my mouth due to the steroids being a vapour given orally. So I eat and drink strong flavours. A year ago, I rediscovered coffee. At first I was happy to filter a single cup after watering the garden. In the autumn, I got a coffee maker as my kitchen remains cold, even with the heating on. I put in a flask and take it to my work space where I have a dish warmer that keeps my cups of coffee hot while I work. I make food full of flavour. It helps, but the taste in my mouth comes back. Extra long brushing of teeth helps too.
I find it hard that I am the only person in the UK with my health problems. I have a letter from my doctor stuck on my fridge for paramedics. This helps a lot.
When people are verbally aggressive, it affects my neurological disease as well as my inflamed lungs. I have no control over this as people do as they chose. I greeted my neighbour this morning, and got aggression. I needed an ambulance for my breathing as well as pain relief for neurological pain.
I am glad to be off the oral morphine. It is horrible. I am now taking a non opioid equivalent. So much better.
I refuse to be frustrated by side effects of my meds. These include loss of concentration, forgetfulness, and sometimes an inability to read.
Hardest of all are the evil people who harass me by phone and now have impersonated me to complain about my neighbours holding on to my mail. I have never done any such thing. I have informed the police as they will be able to trace the culprit.
I had to mute my friend whose husband has been diagnosed with MND. I have supported her, given her information, professional advice, and some wisdom. She chose to be offended on one occasion and replied with language of violence. It caused a reaction in my nervous system. I pointed this out to her, and muted the notifications from her. I continued my support. But one day I saw a reply and didn’t ‘read the rest as I did not want a repeat. I blocked her, emailed her to state my boundaries, and then blocked her email. She has two other ways to communicate with me.