The Fall

Standard
Michael’s story
Last Sunday I found myself on the floor at 4am. I think I had tried  to get out of bed and took my BiPAP mask off. It is strange having weak arms and a heavy head with no neck muscles.
I couldn’t get up of the floor although I tried very hard. I knew I couldn’t be down there long because of my breathing: I can’t lay flat and breathe. So there was time pressure.
Julia was in the lounge reading a book (probably asleep) and I couldn’t reach the call bell. The BiPAP was alarming and the tube was by my mouth so I could get some fresh air .  Someone was looking after me.
Then I spotted a cable charging my phone and I thought if I could phone the landline it would wake Julia and she would see my number and guess I had been stupid.
I pulled the wire and brought the phone within reach, dialling the house phone a couple of times…..  My next thought was Jonny but  then Julia appeared and got me sat up. I thought I had broken the humidifier but it’s tougher than that. My only injuries were a couple of small bruises on my right arm.
Julia’s story

Having had enough of Michael’s interminable faffing I went to sit in the living room and read a book at 02.30. I awoke to the sound of our phone ringing at 4 am. The number was “Mike Mobile” so I naturally assumed it was my brother but on checking the number found it was Michael’s phone. As I opened the door to our bedroom I could hear the alarm for his BiPAP then spotted him flat on the floor. After my initial reaction (panic) I checked he was still breathing before manhandling him upright and replacing the BiPAP. It’s amazing what you can do when you have to.

Being at home and facing a situation like this is far more difficult than at work; there’s no alarm button and no colleagues to help you move the risk-taking buffoon back into bed. Panic gave way to irrational anger; why did he try and get out of bed on his own again? I feel pretty chilled about it now, but for a few days afterwards I couldn’t stop thinking about what might have happened if he hadn’t been able to reach his phone.

We’ve made an adjustment to the place his call bell is so now he can reach it is he falls again but Michael shows no signs of actually doing what I tell him to and continues to launch himself out of bed while I sleep through it. I shouldn’t complain about his stubbornness though; it’s what got him this far.

No toddlers were harmed in the making of this blog. Reenactment staged using a very cooperative model.

chest infection

Standard

For the last 2 or 3 weeks I have been battling a chest infection with broken nights because of a rattly chest and cough. Julia thought it was due to reflux, where my 2-hourly feeds come back up and get dumped in my lungs. So she asked for a feed pump that basically delivers feed at a lower rate over 12 hours. We start it at 8am so it is done by 8pm and we charge it overnight so there are no leads to trip me up.

I like it because once I have got up at 8am I can go back to bed and sleep all morning with the pump feeding me – no 2 hourly feeds.

My sister Jo says it looks like butterscotch angel delight; if only.

I had another trip to EMU in Abingdon on 22 November where they did a chest x-ray and took bloods and said the infection had gone. All the rattly chest business is old stuff that I would need to clear.

This time Julia got a cuppa tea and a chocolate biscuit. 

Prayer Group was round our house last Friday. All the kit we would have had to put in the car and the tiredness meant it wasn’t practical to have it at church. We were left with a calm and peaceful feeling in the house which was due to more than Dexter sleeping at his Mum’s that night.

A good friend Brian popped over to pray after having been woken in the middle of night before with me on his mind and since he prayed for me it has been easier to clear my chest; no more panic to get my breath. I’ve slept really well since then and I’m feeling a bit more human.

The day after Brian came over to pray for me we had a ventilation appointment with the physio. The lovely Anna tweaked my scream extractor (cough assist) to take 2 breaths in and out before the cough phase and then as I cough it is oscillated to try and move all the stuff up. She also trained Julia to do what I can call professional GBH: manual cough assist.

I will have to use my BI PAP (overnight breathing machine) again as Anna said my bicarbonate levels were up a bit showing I wasn’t breathing deeply overnight. Now that the saliva is under control I think it will work better.

When last at EMU they raised the subject of the lilac form. Basically we discussed whether they would jump on my chest if my heart stopped and we decided not to, which seems a good idea.

Julia told the doctors we had a back-up plan…….

In the Bible (Matthew 10 v 8) Jesus commands us to heal the sick and raise the dead. I haven’t seen any people raised from the dead but I’d like to set a challenge for few friends. We called them team Lazarus.  (John 11)

I haven’t got the strength in my arms to shave so Andrea my sister in law shaved my face. It was a bit scary but no blood..

 

I got a head, neck, and shoulders massage this week from the lovely Kath, a holistic therapist, which was sheer bliss. I’m planning to make it a weekly occurrence. https://www.kathannholt.co.uk/  

If you’re into praying: please pray for no more rattly chest and getting used to my overnight breathing machine in a few days.

Head and Shoulders

Standard

So my shoulders have lost their strength and when I have a shower I cannot dry my back. Julia ends up drying me. She is good to me. I feel like royalty; I’m sure the Queen has someone who dries her back.

I haven’t yet asked Julia to wear her nurse’s uniform while she cares for me but it’s just a matter of time…

 

Andrea, Julia’s sister, is also a carer and she’s offered to give me a bed bath – I hope she’s joking – so I’ve got a phrase at the top of the text to speech app ready: “Help! Get this woman off me!”

Also in bed I have trouble moving about to get comfy especially when I slide down the bed in the night. Julia says it like having a seal in bed.

My neck is getting weaker so I’ve had to wear a collar when I’m not sitting in my chair or bed.

Julia bought an Avid Merrion collar..

But I like my Head up collar:

I found it rubbed under my chin and the ventilation physios gave me a gel pad to help.

Sad news: the chocolate puddings are gone as swallowing them was getting too tricky.  I’m on soups or yogurts without any bits (a bit like Dexter).  And I have trouble with soup spoons, even in my stronger right hand, so I have to use a cup for the soup.

Luckily I can still have McDonald’s chocolate milk shake, though it takes much longer to drink nowadays.  And do you know they contain 433 kcals! (all part of maintaining my weight).

I’ve become a full teenager; Julia wakes me up for my breakfast feed at 9am then I’m back to sleep for a few hours till my 12 noon feed. I’m sleeping for 14 hours minimum a night! I’ve also got into duvet days where I spend most of the day in bed getting up for tea.  I’ve tried to cut down on the Netflix and Amazon Prime bingeing.

I’ve had a blood test but the GP says it doesn’t show anything horribly wrong to explain the tiredness – so it must be part of the disease.

If you are into prayer; Please pray I’ll get used to my BiPAP breathing machine for overnight  – it is proving hard to get used to as it seems to be fighting with my breathing. At my last ventilation appointment the numbers had gone down so I probably need to start using it.