Tuesday – Day 9 inside, the morning after what was a very long day indeed…
Tuesday was a funny mix of me being very curious about everything, trying to interpret all the wobbly notes from Monday (when I had been absolutely wacked out of my face on morphine the whole day) and then coming up with an endless list of new questions based on all the bits I had failed to understand or clarify in my delicate, sleepless state. The end result of everything was that I was desperate to write and had to just make scribbles on an envelope until the evening when my head cleared a bit, and then only managed to make an update for Monday.
The last thing I did on Monday night was start a strong iv antibiotic (four times a day, for at least the next seven days). I was then dealing the entire day with massive temperature flares, epic brain fog and what was almost like some kind of narcolepsy! It was both amusing and not very helpful as I was struggling to articulate things or losing track half way through a sentence… All day! I had to keep crashing out for ten minute spells and dropped my phone on my face several times as I fell asleep mid-text
I did have a lot of time to chat to fellow inmates and visitors yesterday – overheard for example, two visitors sitting with P (the lady who can’t talk opposite me), helping her with some food, whilst arguing about oysters and whether or not they were an aphrodisiac – amongst other key points:
“No, you don’t cook them you dozy cat – *coughing* – It’s coming back up for a swim!”
I went over to talk to them for a bit and was saying how I wasn’t sure P was used to me yet, as it is quite hard to interpret her cues and her hand gestures. She will clearly nod or shake her head, but only with people she is very comfortable with. Her daughter-in-law was then saying that compared to when she was next door, P is much calmer and has been eating better and back to being her usual curious self. Next door meaning in the bay with the troublemakers! (Including the lady who sings “la la la la” for quite a while when she is distressed – which is every time she is turned, which is every two hours to avoid bed sores) I have already mentioned that we are a very civilised bunch of ladies; P’s daughter-in-law called us a ‘bunch of good eggs’ 😀
In an uncharacteristic turn of events later on yesterday, P was threatened with non-compliance as she was refusing to open her mouth so the ward staff could take her teeth out without being chomped 😀 I couldn’t stop sniggering 😀
Anyway – I was initially questioning if there were a few causes for Tuesday’s worsening symptoms as on top of everything I was attributing to the infection (temp spikes and floopiness), another thing that came seemingly out of nowhere was massively stiff joints and muscles. This was one of the very first things that had me referred to rheumy last year. The ischemic digital ulcers slowly became the more worrying concern as the meth, steroids and increased painkillers have to a certain extent sidelined the joint and muscle pain for the last six or so months – I was quite surprised to have horrendously stiff and aching legs and arms again all of a sudden!
Obviously my toe has been infected for a while to get so bad, but the ooze was hidden under a dry necrotic shell – and the infection had not been showing up in my blood at all, despite at least twice weekly checks for the past few weeks – daily since I’d been in! The reason it wasn’t showing in my blood is because the toe-not-toe circulation is SO bad, it just doesn’t get into my wider system. Unfortunately the iloprost needed to sort out and heal the ischemia has had the downside of also opening Death Toe up, so the infection is now in the rest of me. The upside is that this equally means the antibiotic can get into Death Toe to clear it… I have been put on a very strong iv antibiotic, so as to bypass all the faffing around with digestion and also to ensure it can smash the infection quickly. It is just a fairly basic strep infection, but when you are immunosuppressed this is still not ideal…
I have had to come of the meth for this week so it can be dealt with and it also means I can’t start the rituximab immediately, which is what had initially being upsetting me so much on Thursday night when Death Toe first oozed. Saying that, my Dr has said if my condition flares (eg. fingers and toes keep getting worse, or there are signs of kidney damage) and they have to, they will start the rituximab whilst I am still on antibiotics regardless, and just keep an close eye on the infection, as the underlying condition is a bit too tempermental at the moment to sideline.
I had a (relatively) clear headed few hours later on yesterday and cornered one of the fifth year students on rhemy rotation for a very lovely chat. Intially we were just chewing over Monday’s meltdown and how weird I was feeling, before talking about her rotations and how med school works (eg. electives in fifth year) and what she enjoyed most. Slowly we went on to what I had studied (human geo) and ended up talking about how I felt about the term ‘disabled’.
I was saying to her that, compared to previously, I am now much more interested in people’s perceptions of the term disabled (including my own!). Also, things like using a stick can act as a obvious indication to give you a bit of physical protection against clumsy drunkards – but can also make some people write you off as disabled, when I for one usually dance just as bloody enthusiastically, just in an adapted manner 😀 (Stick dancing is very much a thing in my hometown 😉 ) It was nice to talk to someone genuinely curious about how I was dealing with coming to terms with it all – she was able to see that I didn’t at all mind the topic and was therefore very matter of fact with the questions. Many people pussy around it, which is annoying, as it leaves too much room for assumptions. Everyone’s experience of having a disability and how they come to terms with it and their feelings about the term ‘disabled’ are different. If you are curious, ask me. Simples. Worst case? I wack you upside the face with disco stick!
Wednesday – Day 10 inside – more examples of morphine carnage 😀
Had a very lazy day today with many visitors – Grandma came again WITHOUT FRUIT – unless you count orange juice! Another friend came and knitted me a mitten in less than an hour for my ‘gammy hand’ – cannula hand 😀 – as my other mittens wouldn’t fit over the lines and I had cold fingers 🙂 A very useful kind of friend xxx She had the pleasure of talking to my Grandma and witnessed some magical conversations, including Grandma telling me that myself and the other oldest grandchild are “rubbish” as we both have what she deems to be inexplicable illnesses… and its a good thing that she has so many spares 😀 Way to make the sick ones feel loved haha! When discussing that everyone in the ward was on morphine as a painkiller, so we should therefore decorate accordingly – a little more like an opium den! – she also announced that she wants to ” smoke pot before [she] snuffs it!” I lost the plot a little after this one.
The rest of the conversation centered on the fact she is about to spend a week on a Catholic pilgramage and will be making me her personal mission. Apparently “no one prays harder than [her]” and she nags the Lord 😀 I did point out that if I were to have a preference, it would be that she DIDN’T nag the Lord, so that he maybe looked on my case a little more kindly… Its a very odd one, as I am completely atheist but can accept that a lot of my family have differing types/levels of belief – so when they say they are going to pray for me, I have to accept that from them, this is an expression of love and concern. It took me a long long time to feel like this, but today was a nice reminder that I have matured to accept that other people have their beliefs, as I once used to be furious as a teenager at various factions not allowing me mine – or my lack of!
Death Toe got a new fancy (apparently quite expensive!) medi honey dressing today, to be changed now every 48 hours going forwards. Since starting the slow release 12 hour morphine, I have been phasing down the oramorph so I can use it properly when required for breakthrough pain and have it be effective – as pre-planned, I had some about 20 mins beforehand and it did prove quite effective 😉 The act of undressing and redressing itself was actually remarkably bearable – Death Toe (once cleaned) currently looks a little bit like a pink shiny newborn mouse… Without a tail… It was a little bit afterwards that I was very grateful for the oramorph, as it was very stingy.
Two more lovely evening visitors came to see me shortly afterwards whilst I was still very floaty, but in quite a lot of pain. They were appreciating Francis (when not laughing at me…) and I showed them the following from a convo with my brothers at silly o’clock:
Francis has the happiest face ever in the daytime, but NO ONE ELSE seems to appreciate how creepy that becomes at night!! Also demonstrates just how serious I am about losing Death Toe in a ‘tragic accident’ and yet again why phones should be taken away from people on drugs 😀
Last night’s morphine message is my fave so far; the difference from normal is that the spelling for this one is remarkably wonderful – and I had no memory of sending it until receiving a reply at midday! This was sent to one of my best ladies, who I apparently felt would understand my feelings, at what it appears was an emotional time. Namely, 2.30 am. I can’t even feel embarrassed as I have absolutely no recollection of the moment referenced or of composing such a heartfelt message. Drugs are bad, mmmmk!
M has been off her singing game a little the last few days. Yesterday evening, I asked her if she was ok and she told me she was giving it a break whilst she listened to her wireless discs, (cd player in room). We agreed that everyone needs to have a break from the singing now and then to be able to appreciate it when she chooses to serenade us, which tickled several staff members within earshot… Today she was still not singing a great deal and was actually quite miserable at one point. We had another very slow corridor hobble and she eventually perked up again and can currently be heard being kicked out of the men’s ward again at… 11.15 pm 😀
Ahhh – according to nurse gossip, one of the other ladies, the one that sometimes does duets with M, has apparently just ripped her nightie off again >.< Life on the ward is a terrible mix between highly entertaining and very upsetting if someone is distressed or in pain. On a ward primarly full of 90 something year olds (I honestly am that much younger than everyone else and there is a good 20 year gap between me and the next youngest!) the majority of patients have dementia or similar, so I’ve had to learn to take all conversations as they come and prepare for very sudden and confusing changes in topic and content. I have also had to try not to be continually stressed when I can hear someone in distress down the corridor, as this is unfortunately qute a frequent occurance on a ward with 30 odd patients – and stress exacerbates my condition 😉 Thinking solely of myself 😉
The saving factor is seeing how lovely the staff are with the patients and the fact that for the majority, they also have happy (if not lucid) spells interacting with vistors and staff.