It is just about a week now since I escaped hospital and as expected things have not exactly gone smoothly. I have previously written about some of the problems that I have faced since returning home and what I also expect to happen.
Therefore today I have decided to detail what a typical day is like for me during this ‘recovery’ stage.
I will start with me laying awake in bed, it is 5am and I have hardly slept a wink, I am using my CPAP and though it is helping A bit I still can’t sleep and chest is not happy at all. I am full of cold which isn’t helping, I am shattered and I am feeling run down. I have got up a few times during the night, my legs are very restless which is something that happens when I am in high doses of prednisolone and always seems worse following a hospital admission (possibly due to lack of exercise etc). Normally (when I am healthy and working) I get up at 5am but there is no rush in getting up today. I ‘sleep’ with my head propped up on 3 pillows to try and give me some support rather laying flat, this is something that I have had to do for years but again it isn’t helping me at the minute. I am feeling very dry (due to the CPAP) and so I take my CPAP mask off and have a drink. One think that I do often use is a Bluetooth earbud which I use to listen to music while I am in bed. It is very small, a single earbud (rather than a pair) and it sits wirelessly in my ear a bit like a hearing aid. Depending on how I am feeling or what I am trying to achieve I listen to a playlist from my iPhone through the ear bud. I have a playlist which I listen to when I am really struggling to breathe which consists of a few songs that I find I can breathe in time to, I don’t know how or why but it helps. This play list includes
Umbrella (Acoustic version) by The Manic Street Preachers
All of Me by John Legend
Sorry (Acoustic version) by Nothing But Thieves
Skin (Live version) by Rag n Bone Man
The nurses in the hospital even realised how much the music helped me, so much so that when I was having an asthma attack they had a 3 point plan:
2) Earbud and IPhone for music
3) Pain Relief
The ear bud is only a cheap thing but I have come to rely on it so much, it cost me approximately £10 from Amazon
I then have other play lists which contain more songs, some are full of more relaxing songs which I listen to when I am trying to sleep, this is the playlist that I decided to play this morning. So earbud in place, playlist on, CPAP back on and one last attempt at sleep!
I wasn’t exactly unsuccessful in my attempts to sleep as I did manage to doze on and off for a couple of hours until it was time for my wife to get up and get ready for work. By now my chest was feeling really tight and so my wife went and warmed my heat pack up and I went on my nebuliser. Both the heat pack and the nebuliser helped a little.
My wife then left for work and I awaited my child minders for the day (my parents). I checked my blood sugar levels and they were low and so I decided to have some breakfast.
Breakfast this morning was going to be 2 courses, toast and my cocktail of morning meds! I don’t usually eat breakfast at home as I usually can’t stomach anything early morning and so I usually get breakfast at work and so making breakfast for myself at home is a rarity. I had my toast and then checked my bloods again, they were still on the low side despite my toast and so along with the rest of my morning meds I took a glucose tablet and juice.
In addition to the glucose, I took my salbutamol neb, my 2 inhalers (due to taking the neb I didn’t bother with my ventolin inhaler). I then took my oramorph, I decided to leave the insulin due to my sugar levels and then I took my tablets. I also checked my peakflow which is still only floating towards the bottom end of my orange zone.
This morning was just 22 tablets which were washed down by some water. I also usually take a nasal spray but recently I am having lots of nose bleeds and so I have stopped taking it for a while. Then right on queue as I was packing my meds away a stream of blood started flowing from my nose! Marvelous, 20 minutes and plenty of tissues passed by before it finally stopped.
By now my parents had arrived and so after having a chat with them I decided to have a soak in the bath. When my asthma is bad I find that a bath can have either a positive or negative effect on me (sometimes the steam seems to help, other times it seems to make it worse. As is the case at the minute I made the wrong decision, I felt worse! I felt short of breath and light headed and so I quickly moved myself from the hot and steamy bathroom and went to my slightly cooler bedroom where I quickly dried myself down, put some clothes on, sat on my bed and took another neb. As a precaution (due to feeling dizzy) I checked my bloods again, they weren’t too bad.
Once I settled down I went down stairs, chilled and watched done tv with my mum, meanwhile my dad walked to the chemist to pick up my repeat prescription. I still haven’t left the house since I left Hospital apart from been taken by car for 2 medical appointments. There was no way that I was going to venture outside today, it was bitterly cold and there was a strong wind.
My dad returned and by now it was lunchtime, we just had some sandwiches which we enjoyed but I was shattered and my lungs were getting grumpy and so I decided to go back to bed. Before getting into bed I checked my prescription and found that once again the pharmacy had made a mistake, there were 4 items missing. I rang them straight away and they acknowledge that they had made a mistake and missed the last page off of the repeat prescription. I then took my lunchtime neb along with just one lunchtime tablet and then checked my bloods and peakflow.
I laid on the bed and I think that I dozed on and off for about a hour or so but to be honest I probably felt worse because of it.
I decided to get up and then with the help of my dad we put some more sockets in my bedroom, this was needed as I have had extension leads trailing round the bedroom since leaving Hospital. Thus was needed due to having to plug in my clock, nebuliser, CPAP, air purifier, fan, phone charger, iPad charger, Bluetooth ear bud charger and my Apple Watch charger. We did a good job and got the work done pretty quickly and the bedroom looks a lot tidier, more organised and is probably a lot safer!
Just attempting a small amount of work though (and it was only a small amount as my dad did most of it) really took it out of me. By now it was time for my parents to go home and so following another neb I decided to try and get my head down for a hour or so before my wife was due home. I decided to use the CPAP and I’m not sure how much sleep I did manage but I did get some abc the next thing I knew my wife had arrived home. I checked my bloods which considering how much prednisolone I am on was still pretty low, not low by normal standards, but lower than expected.
We then had our evening meal, along with another tablet. The rest of the evening was spent chilling, I watched some football on tv (it’s not the same as going to matches but in my current state the only football fix I get is on tv). It would appear that my wife is now also coming down the same bug that I have and by 10pm we both felt so out of sorts that we went to bed. I checked my bloods, checked my peakflow, took my neb, my inhaler and a further 8 tablets. My chest was feeling really tight and sore so I also took some oramorph. My peakflow has dropped somewhat but it wasn’t surprising and I wasn’t too bothered that it had dropped into my red zone.
I fired up the CPAP and turned out the bed room light. The CPAP though wasn’t going to be much use tonight. I was coughing badly (as a result of my asthma and cold), I was sneezing and my nose was running, none of these are pleasant when wearing a CPAP mask!
I soon gave up on the CPAP and promptly suffered another nosebleed. I knew that I was going to be in for a bad night and I was right, the hours came, they passed and still no sleep, I tried the music but still no sleep. I got up and heated up my heat pack, it helped with tightness and soreness in my chest but still no sleep. I chatted to a couple of fellow asthmatics online who were also struggling to sleep. My chest began to get worse again, a quick go on the neb offered some relief. By now it was 5am again, my coughing and sneezing had eased and so I once again fired up the CPAP, I grabbed my ear bud and stuck on some music, whether it was sheer exhaustion, the CPAP or the music I am not sure but I did manage a hour or 2 of sleep. Then I woke up, lungs on fire, CPAP off and nebuliser on.
Every day (and night) appears to be following a similar pattern. I desperately need some sleep and I am desperate to try and leave the house but at the minute I’m just not up to it and weather is against me as well.
All in all another boring 24 hours with the added frustration of feeling no better and feeling more and more exhausted by the minute.
Thanks for reading