In the last two months, both my breathing and my neurological disease have grown worse. I find breathing is more effort, and I am short of breath more quickly. My lung capacity is decreasing.
The spasms on the left of my body increase in their strength. It brings almost unbearable pain, and weakens my spine further.
D. Woodhouse will be delighted to hear this. Such a malicious person rarely exists.
Lately, my health has been OK. For me, with all the complex issues I have. My breathing is ‘ok’ but I do frequently feel I might suffocate. This occurs when I change posture. It means that sometimes I lay down at night and my respiratory rate will be about 140 and my pulse about the same. Panic strikes but I know that waiting it out will bring normality back.
I had botuline injected into my arm in an attempt to relax it. That failed and has caused me excruciating pain. I have made a complaint.
I also have a complaint against South West Ambulance. I can’t go into detail.
So generally, things are always less good than a week before. The degeneration is slow. Warm weather is my friend.
My garden is delightful. Flowers everywhere. I greet each new flower with delight. I will post a photo soon.
I am blocked in my upper respiratory tract. I am making a terrible noise in my throat and just below. It started when, I don’t know. Martin heard it too.
Sometime later:
So I called paramedics out and I had a wheeze in my lungs. I would never have known.
So now Martin can work a home nebuliser because I don’t want another crew like them.
My breathing continues to be noisy. I am growing used to it but there must be a reason. I will see my specialist in the next couple of weeks.
It is colder again. Climate catastrophe is very real. My garden has had shoots for weeks and flowers all winter.
Martin has a digital piano again. He is so pleased. I am happy for him too.
There is a very strange editor at Medium, no there are three strange editors. One says I gave her sleepless nights and started rumors of bullying by me. Another treated me very differently and after I self published my article, blocked me. The third announced she would be dividing the week with someone she told to block me, but now tells a friend of mine that she is not doing that.
I find it very hard to trust editors who own publications. They chop and change. It is absurd.
I am pleased with my current publications. I am making good connections.
Late yesterday afternoon, I decided to take a bath. I was feeling tired mentally and felt it might refresh me.
I felt almost unable to get undressed. That seemed to exhaust me. I enjoyed cleansing my body, though and got rid of the last few cut hairs after my hair appointment. My hair does look great. I take my hat off to my new hairdresser. She is very very good.
Out of the bath, I couldn’t decide what to wear to bed and my breathing was noisy although I felt I was suffocating. I felt like I was barely here. I can’t explain it.
I felt nervous about going to sleep. I felt I would not wake up. Then I stayed up too long and could not sleep. I fell to sleep around 3-4am and was woken by my phone. My friend in Malaysia had got the time difference wrong. It was 5.55am. I managed to drift back to sleep, that half-waking and sleeping which I really love. The radio was on and I enjoyed what I heard.
I have written today and feel like I have done a lot, except I haven’t really apart from enjoying the afternoon.
My breathing remains noisy and very shallow. I had a CT scan on Friday. It went ok.
I felt appreciated today. I’m grateful for that. The light in the afternoon is markedly longer now. Soon the sun will reach the back garden. There are shoots coming up, daffodils, and snowdrops. Such a thrill.
My breathing is getting worse. Two nights ago, as I laid my head on my pillow, respiratory rate was about 80. That is more than one per second.
It was a little scary. I just wait until it slows. It takes a few minutes. It gradually slows.
A lot of the time I feel I am suffocating. No air in my lungs.
Over the last few days, I have struggled to breathe. My inhalers were no help and the paramedics fixed me temporarily.
I stopped using the cough assist machine on Friday. It is the only factor that has changed, apart from the progression of my disease.
Yesterday, I decided to pack a bag and go to hospital today. I have not. My breathing is easier. I no longer feel I am suffocating.
My theory is that the cough assist dragged up phlegm but not enough to cough up. I am wondering if the movement of phlegm was enough to impede my breathing, but not enough to cough up.
I will not use it again until I have medical advice.
Hypoxia is very much part of my life now. I set a reminder on my phone for this morning. I had not given the reminder a name, so I had no clue what it was for. It was for a poetry event and lunch with a friend. My friend arrived and I dragged myself from my bed. We have rearranged.
Yesterday, I went back to Southampton. I chose to go in a car this time. It was a high vehicle and I hurt my ribs as I got in. I could have done with pain relief, as the pain stayed until I went to sleep last night.
I have a superating wound under my ribs on my left side. My ribs hurt as high up as my underarm all day, every day.
I saw a very pleasant physio who showed me how to to use a machine that first forces air into my lungs and then sucks air out. The idea is to remove phlegm, as I am unable to cough.
It was extremely tiring. I asked that any future appointments be earlier in the day. I tire so quickly.
I spent this morning in a state of shock. After going to bed at 7.20pm last night, I woke feeling almost in shock. I strangely couldn’t remember where my stairs are.
I drank lots as I had been dehydrated. I woke twice in the night and drank. I know I would feel better if I took a shower, but I feel too tired.
I feel so trapped in this body. I don’t want to be in it anymore.
Yesterday, when I went to water the garden, my breathing deteriorated quite a bit. When I came in, I felt I was suffocating – I literally could not get air in. It is terrifying, as the feeling is so visceral. So overwhelming. It is not like energy being sapped away.
My body fights to get air in. I can’t stop it. My lungs crave air. So now, I am loathe to do anything. Any exertion seems to result in suffocation.
No appointment from Southampton as yet.
This meme is for amusement only. I don’t drink every day. Far from it.
Yesterday I awakened feeling pretty good. I was writing and communicating with my lead at SWASFT. I cannot say how wonderful these people are.
I gradually realised my chest was heavy. I went downstairs to open my post. After a package proved challenging, I found I could not breathe.
Paramedics, who were so much fun, fixed me. I felt alive again. One finished opening my package, took out my recycling, and made me a cup of tea. I am required to have a drink after nebulsation. It affects the mouth and throat.
I carried on after that with a smile in my heart.
I found the evening very tiring. The Subutamol had left me wired. And exhausted. I went to bed earlier than normal. I am up early and the birds are beginning to sing.
This morning a friend messaged me to say he was in town and would take a look at my phone, which since I put it into a Snakehive case, has been showing a screen that I don’t want. I could get rid of the screen, but it annoyed me a lot.
I wanted him to come to my home, but know he’s always pressed for time, so I went to him. It is bitterly cold, and by the time I got home I was not able to breathe. The cold air had completely altered everything. I dialled 999, frightened that I would pass out before anyone put me through. Then, one gasps out what is needed, one’s birthdate etc annd then they go through a list of questions about Covid-19. They don’t accept one saying you don’t have it. You have to answer each question.
This takes five minutes. I was so afraid that I would be unconscious in my bedroom. I lay gasping and then I heard a siren. I crawled to the top of the stairs and waited. They parked and came in and restored me.
They aren’t happy about the Covid questions either.
No, it is not what you think. No one is thumping my back with cupped hands to loosen phlegm. I wish someone was.
I acquired a contraption that is like a whistle but much bigger. I blow into it and a ball lifts and vibrates. It is the vibration that I inhale that loosens phlegm. The only problem is that I am unable to cough it away.
The thing is though, my breathing has improved. At the same time though, I have started drinking ginger, turmeric, honey, and lemon as a tea. I feel this helps too. They are all decogestants. I didn’t think to start them at different times as I’m a bear of little brain. I’m just happy that my breathing is improved.
Tomorrow, I have a zoom meeting with my boss to be at SWASFT. Another phoned me earlier today to reassure me that messages with links to other articles are the products of the unintelligent. He didn’t say it quite that way though…
Writer and psychologist. My health, a journey with two life shortening diseases 
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