Living With Hypoxia

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 doomThis 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


Still asking for responses to managing difficulties…

When I encounter someone with a problem they find hard to manage, I ask how they can break it into ‘bitesize’ pieces. One lady found it hard to do her vacuuming, so eventually she decided to vacuum one room at a time.

With my breathing problems, I need to sit often and stay calm. I have always enjoyed gardening, but now I must use patio planters and pots, though a small flowerbed I made with help is flourishing. I am filling it with perennials in shades of blue, purple, pink, and white with a bit of ivy to trail out. It will jostle with flowers from early spring through summer. But now, new neighbours have been making a nuisance by drilling holes into public land to hold their back gates open. (What happened to wanting some privacy?) This has affected my access through my gates, deliveries, collections, tradesmen etc. Sam, my lovely friend, hurt her back by having to close their gate nearest to me so she could take some paving slabs.

So I am less relaxed in my garden on my own, and today after I had planted two plants I was hearing my neighbour making lots of noise in their garden and my chest became tight. I had to go to my doctor’s practice to be nebulised. My doctor asked if I had any anxiety, and when he returned to me I told him about my neighbours . He expressed his dismay and incidentally suggested a new medicine that helps prevent allergies exacerbate inflamed lungs.

I am a good self manager, I just need an intervention now and then and more in summer.

How do you manage your stresses? Do you have good strategies or are you still looking for new ones? I’d love to hear your thoughts please.


Sunburnt but coping.

Yesterday afternoon I went to post an important letter and my lungs felt like lead. They haven’t felt like that since I had pneumonia a long time ago. But I felt alert and interested in life, whereas with pneumonia one is listless and passive.

I got home and phoned my medical practice. They had the duty doctor phone me and he made a home visit. This meant that if I needed to be admitted to hospital, I could go straight to a ward rather than through the ED.

My doctor (I have known him since my daughter was four as our children attended the same schools) recorded my tachycardia, respiratory rate etc and then gave me a double nebulizer. It worked well, and I was no longer gasping in between words. To be on the safe side, he prescribed more antibiotics and more steroids. This concerns me but I need to trust and know I am in safe hands. This doctor has won my trust, which says a lot. The last doctor I trusted retired early about 18 months before my Dad died. I was angry at him, and it was a bereavement.

It took me until after 4am to sleep because of the trembling and stimulus to my nervous system. I’m told that salbutamol does not cross into the brain, but boy, it does make me high. I usually resort to drinking some alcohol to bring me ‘down’ so that sleep can come.

My friend fetched my prescription for steroids, the antibiotics had been delivered earlier by the pharmacy as I need some in the house at all times. I slept late and rested with my friend in the garden with a cup of tea, chatting. This afternoon, friends came and we did gardening, though I mostly supervised. I now have some solar lights for evenings, decorative ones, and a water feature that gives that relaxing sound of water running…

I am tired, but so grateful for a good day without wheezing or gasping. I am learning not to be so spontaneous about gardening, a little at a time and stop. Weeds can be beautiful too.

I am sunburnt, stingingly burnt. Medication has already changed my hair, and now it is changing my skin. I am learning a new me. A frailer, but still pushing on, grateful for the help and love of my friends. Being delighted with what I see everyday.

Mostly, I am learning to ask others to spare me exerting unnecessary energy. It’s a hard lesson.

Please follow @purbeckpoet