My life has changed radically this year. When I think back to how much I enjoyed last year, I am incredulous.
Five years ago, I was diagnosed with inflamed lungs. I had been exposed to damp spores. Gradually it grew worse, and I started to have what were, seemingly, asthma attacks. These were few and far between for a while and then became more frequent depending on the weather.
There has been much discussion about my what ails my lungs, but deep down I began to realise that I would never be fixed and that I had begun my journey towards dying. It was a matter of how long.
I also have a neurological disease which is extremely rare. As far as I know, I am the only one in the UK. It has been progressing for some time. Now I need strong medication so that it doesn’t overwhelm me. My left arm is hard to control. There is damage to my spine, ribs, and, therefore, my lungs.
Some of you may have read learning-to-live-as-a-carbon-dioxide-retainer, and now I have hypoxia as a result of that. Hypoxia is lack of oxygen to the brain. It means I am forgetful, but not as you know it. My memory blips every few seconds. I forget the next word I want to type. I forget I have just made some coffee, I forget to eat the treat I made or bought that is in the fridge. I have stepped out of the shower with shampoo in my hair.
I go to the town to get cash, but find I have forgotten my wallet with my debit card
I don’t lose the continuity of my day. I just forget to be in certain places at certain times. I use the reminder function on my phone a great deal, but sometimes forget that it has alerted me. I need to start using the snooze setting. I prefer using my clock function, it seems more user friendly and plays my ring tone until I turn it off. I go to the town to get cash, but find I have forgotten my wallet with my debit card. It’s good it’s not far to go.
I have sometimes prepared myself to leave the house, my inhalers, my wallet, my phone, only to find my phone still beside my laptop when I return. I feel appalled, but if I need an ambulance there are enough people on my routes to call an ambulance for me.
I use the third step of my stairs to put things I need to remember to take upstairs. My cell phone is there a lot as I can easily hear it from most rooms downstairs, but won’t forget to take it up with me. I write upstairs. However, I still leave necessary things behind and sometimes don’t see them for days. I have two inhalers, and never take both upstairs or downstairs.
Some of you have read how the other friday-i-had-to-be-60-miles-away-to-get-a-device-for-my-lungs. It is called a CoughAssist. It’s like a vacuum cleaner. But for lungs. This week, I stopped using the CoughAssist. Using it for ten days made my chest feel as though there was a log in it. I was struggling to breathe. I can only think that phlegm was drawn up but not enough for me to cough and so caused that “log in my chest” feeling.
On the positive side, I find less to make perfect. I get concerned about less
I have decided that I need to be in hospital. Every day I decide to go and then I see a ripe fig, butterflies, or bump into a friend and go to sit in my garden with a cold drink, enjoying the sunshine☀ and nature. Each day I put it off, I feel a bit better which will make it harder to investigate the “log in my chest”. This morning I remembered I left my glass outside after my friend left. No matter, it will still be there. (Since writing this, I tried to go to hospital. Paramedics came but would not take me to the ER as it is hostile to neurological disease. I have emailed my consultant’s P.A.)
On the positive side, I find less to make perfect. I get concerned about less. I am more placid rather than animated. For me this is good as I have always taken on too much. I don’t worry about my appearance as my clothes all mix and match so it is easy to dress and look good. I need to remind my self to brush my hair.
On Monday morning, when I wakened, I had my first experience of impending doom. This is a symptom of hypoxia. I stayed where I was, in bed, until a friend let herself in. We had a lunch date, so we re-arranged. It was not terrible, but a slight oppression. I dare say that I will have worse episodes.
It is not depression. I have suffered very deep depression, but all this is not triggering depression.
As I write, I have had a call back from the respiratory clinic. That person said I could use the CoughAssist less. That is comforting but as she has never met me and is unaware of the damage to my ribs, I am a bit skeptical. Eventually, I will feel the “log” in my chest again. I asked for the young woman who showed me how to use it to phone when she returns to the clinic.
I am still of sound mind. It may seem that I am suffering dementia, but far from it. My intellect is intact, my knowledge and expertise are still there. I have no problem with what I know.My spelling, however, is sometimes adrift.
Thank you for reading this. If you got this far, please highlight a word in this sentence. Then I will know who may give support to me in the future. Comments are welcome too.
Published in The Lark