Today started fairly well, I remembered to use my inhaler. I am meant to use it every morning, but I am only just getting into the habit. It’s habits that make our lives good and happy, or empty and pointless.
My daughter went to fetch my steroids. I got them later than I hoped, but I took them, todays dose, anyway. I’m meant to take them in the morning as they encourage wakefulness, rather than sleep.
Last night, I watched Sully. I enjoyed it a lot. I don’t watch a lot of TV, as I’d prefer to watch it with someone. I mostly enjoy natural history programmes, some documentaries and a good drama.
I have run out of hours today. I slept a little late as I was awake a lot last night. I have had letters from the hospital. I pick up a device to monitor my breathing during my sleep for two nights. This means I probably won’t sleep…
I got news from friends in the States, though we are in touch a lot with WhatsApp. And I am a sounding board for my friend in Australia, who is buying a mother of the groom outfit. She has a wonderful dress. Now we are discussing jacket or pashmina. I’m for the pashmina as it will show off her dress. (The wedding is up a mountain in New Zealand, and it can be quite cool up there.)
I chatted with a lady from the hospital, who is dealing with my complaint. It is not a formal one. She is giving him feedback.
I had hoped to write a post about something that might bring understanding on issues that plague humankind. Instead I am just writing part of my journey with chronic disease.
I have been dealing with the pain in my shoulder, and have seen some improvement. I’ve used breathing techniques to relax, and small amounts of alcohol – a glass of wine will send me into a deep sleep, which is really great and medicinal.
It seems I may have bruised a bone in my pelvis when I had that awful fall on06 11 19. The bruise was bad, but there is still tenderness and some pain in my left leg.
Last week, one day, my blog was most read in Japan. I found this surprising. My blog has been read in every country in the world, apart from a handful of countries in Africa. I find this very humbling. I hope those who read it find inspiration and hope.
I started this blog without even thinking others would read it. In all honesty, I think it’s only been this year that I started to engage with followers on WordPress. Sometimes a friend will let on that they have read something, but I would rather not know, as I want to write freely.
Last week, someone hacked the facebook account of a friend of mine and sent me a friend request. I blocked that hacker and told my friend. I don’t understand why I get that intrusion now. When I was much more engaged in human rights, it was almost normal to be ‘spied’ on, or brand new accounts asking my friends questions about me. Friends who freely gave info to someone they’d never heard of became unfriended by me on facebook. I’m still in touch with a few, but really, who gives info about a friend to a stranger? I don’t.
All sorts of tactics have been used to try and intimidate me, or find out information about me. That’s ok. But when my daughter was brought into it, that was quite another. I am a tigress when it comes to my daughter.
I’ve stepped back in the last 18 months as it took a toll on my mental health. Politics is so slow. And so many lies are told and believed. Some governments place no value on human life. Some – most goverments see refugees as less than human.
We have an election here this week. I shall vote Labour as it will save our National Health Service. It is up for sale with the Conservatives, and Trump’s proclamation that he isn’t interested in our NHS was word play. He hates the NHS because Republicans see it as socialism. We pay for it in taxes and it is free at the point of need. The Tories have planned to end this and make it a for profit scheme.
If you have the right to vote here in the UK, please vote Labour for the sake of the NHS. I have never before advocated for the Labour party. I don’t like Jeremy Corbin, I don’t like a lot of things, but Labour is the lesser of the two evils.
Look for the now waning moon in the morning this weekend. I know I’m late with my invite to the party, but this gives me such joy.
I lost an entire poem today. I had spent ages crafting it, and had tried and failed to turn it into a Word doc. Then I realised the draft has disappeared.
My head has been aching from the sound of my neighbours high pitched wind chimes. They refuse point blank to move them, and if only they were a lower pitch.
Great news is that my doctor has prescribed a smaller dose of the medicine that helps my breathing so much. I had to come off it because I was getting the rare side effects. A smaller dose will be ok. I’m trusting that.
So the good outweighs the not so good, and the absolutely awful. I try to look for joy in everyday things, and I find it. It makes life so much happier. Today I wrote about how a bee had landed on my skirt, and I discovered it as I sat down in a coffee house in Bournemouth. I found such pleasure in watching it, before it flew off and found it’s wiggly way through the door back out to the polluted air, and I wondered where it has been living.
This morning I was woken by a text from a friend telling me that she would be coming with a some large pieces of wood that been removed from her house. She had offered them to me because I would like to have a cupboard built because there is an alcove in my dining room which gets treated as a dumping ground by my family members and my cleaner. She had arranged it the previous evening.
It is difficult for me to cope with spontaneity from other people, especially on waking. Now that I am no longer on the medicine that normalises my breathing. I went downstairs to wait and then realised that I could be waiting for an hour as she’d given me an hour window. So I put the shed key a work top in the kitchen, unlocked the back door and tried to get on with a writing project. I kept misspelling, making silly mistakes, I mean more than usual.
My friend called up the stairs, so I told her where the key was. I’d had to put off someone who had wanted to come to visit. Then I realised that some stuff my daughter had bagged up but not taken to the refuse bin (which went missing during Friday evening) was still on a dining chair s0 I took it to the same friend to but in her refuse bin.
I sat with her for a while in her garden, which looks so pretty. I feel so wretched that she has used so much water, far more than necessary, and was able to buy fairly mature plants. I wish a gardener had advised me that tubs of plants require more watering and as they had seen me really struggling to breathe, would have told me I would not be able to manage the watering.
I had intended to phone the council to report my refuse bin missing, but I had been told I was going to hear from a police officer so I didn’t want to use my phone. Then I got a notification on my laptop telling me I had issues with my Microsoft account so I went to that. It turned out that my two step verification had been turned off. I had not done that. So now I feel even more alarmed and in need of the police.
I have had quite a bit of pain today. I don’t know why. One of my hips sometimes gets a nerve pain, and then I find it painful to walk.
I haven’t opened all my mail yet, and it’s time to go to sleep.
Today has been a very strange day. I didn’t get to sleep at all on Wednesday night so yesterday I fell asleep at 4.30pm and didn’t wake until 6 pm this morning, when I slaked my thirst and then went back to sleep until 11pm.
I managed to convert a read only document to a docx to attach to an email. Then a man came to put up a new mirror in my bathroom. It has a shelf underneath and small shelves down one side. I’m very pleased and it cost far less than the same one in Ikea.
Meanwhile I had been receiving stroppy texts from a friend who had been doing gardening for me. He actually knows nothing about plants and I had had my flowerbed gravelled over before I knew him, and I had planted a few pots. When I got to know this friend he inspired me to plant up more pots, but we didn’t realise that this summer was going to be so hot, and because I tire so easily and cannot water often enough, most of my plants have died. It’s made me so sad.
At the same time, a man whom I’ve employed a lot to put up shelves, blinds, etc and had left me with grit that got walked into my carpet and later after another job had left a lot of rubbish was begging me to let him do a job for free in order to make up for over charging me. I thought was going mad. My breathing was becoming wheezy. I had to end all the traffic on my phone. My daughter arrived and we had a light dinner. I opened a bottle of Mojito.
I just couldn’t settle. We went upstairs so that I could use the ceiling fan in my bedroom. After not long I wanted to go back downstairs and open both windows. We talked about her work, and then I wanted to go back upstairs. I was using my inhaler a lot, but my breathing was not improving. So I told my daughter that I needed to be nebulised so she waited until the ambulance had arrived. The nebuliser worked. I could talk without gasping for breath.
They wanted to take me to hospital because my tachycardia had not reduced and my respiratory rate had not slowed. I told them I felt normal, my tachycardia was normal although not quite that fast. I said I would not call an ambulance feeling as I did after the nebuliser. So they wrote that I risked death and asked me to sign it.
I know myself very well. I am a good self manager. I know for sure that the Emergency Department is not at all a good place to be for me.
This a photo of Highway 1, leaving Santa Monica behind and heading north. I’ve driven it twice, once to meet a friend in Las Olivas, and once on a road trip with a different friend heading towards Monterey and camping on the the way.
This drive exhilarated me in such a deep way. The beauty of the mountains and the vast ocean below. It recharged me in a way I can’t explain. The beauty and my love of driving fed my soul. It invigorated my spirit. I felt alive as if the Holy Spirit was flowing through me with joy and vitality.
Just now, I feel weary. I feel too many jobs need doing that I can’t do. I’m struggling to keep my head above water. My breathing is good, my life is fulfilled, but I am without domestic help as I got used to. I was supposed to go to Swanage today to catch up with a friend, but I fell asleep soon after waking up…
Tonight I am going to a local poetry group and have been invited to read at Purbeck Folk Festival.
I now carry a small bag with me around the cottage and garden. In it are my inhaler and spacer (a small cylinder that my inhaler puffs into and I then inhale because my breathing is too irregular to use an inhaler alone), my cell phone, and my purse in case I decide to go out. Doing this saves me energy and allows some spontaneity. It prevents unnecessary journeys upstairs or downstairs, and prevents me from panicking.
Panic is my downfall. If I’ve left my inhaler somewhere, looking for it increases my likelihood to need it even more. That can result in needing an ambulance.
I am a governor for our local ambulance service. Local is not quite the word. It covers southwest England- SWAST. Only twice have I needed to raise a concern. Paramedics are awesome people. They are heroes.
I help them by being a good manager of my health. But sometimes when the post comes, garden needs attention etc I feel as though I’m only just keeping my head above water. I always seem to leave something somewhere, but not my little bag.