Today has been, hands down, one of the hardest days I’ve had in a very long while – harking back really as far as my admission in June, where every day was a challenge.
Luckily, the benefit of hindsight and such tells me that it’s not quite that bad – one horrible day in a week can’t possibly be as bad as one passable day in a week – but it’s only thanks to a little bit of let-up in the relentless onslaught of tiredness, breathlessness and exhaustion that allows me an ounce of philosophy in my outlook.
It started, oddly, not too badly – I woke this morning having had very little sleep but not feeling too bad about it. I clearly had a lot on my chest, but was also managing to get quite a bit off just by being up and about. Early mornings are usually the time when you find out what kind of crap is on your chest, since the very process of getting up and moving around tends to make you cough and splutter, which in turn lets you see a) how productive you are b) how easily it’s moving and c) how out-of-breath it makes you when you do.
I was moving stuff pretty easily, although it was exhausting to cough and my throat was still causing problems with getting the big lumps up. (Nice, I know, but this is a full-disclosure blog, so if you don’t like it it’s not for you, I guess!). Having got my morning dose of drugs out of the way, I crawled back to bed feeling breathless but not too bad.
I woke again around 12.30, later than I’d planned and wanted to. With a 2.30 appointment in Oxford, I’d have to be out of the house in under an hour, so would need to pick and choose the most important elements out of bathing, dressing, eating, doing physio and doing nebs, as well as getting my things together for the Oxford trip (it always involves taking a book things as well as my physio-helping device, which all need to be collected into a bag – it may not sound like much but believe me, it was a task-and-a-half today).
I settled on food and nebs being the two most important things, so threw on some clothes in a very slow and deliberate manner and made a sandwich, which I sat and munched before doing a neb and collecting my things, all of which filled the next 45 minutes and made me incredibly, uncomfortably breathless.
At Oxford things didn’t improve a whole lot. My nurse changed my port needle, which was fine with the exception of the bioclusive (clear plastic) dressing pulling off a good chunk of surface skin by my under-arm area, which was then healthily swabbed with alcohol prior to the insertion of the new needle. Yes, it smarts.
My physio session was really, really hard work – harder than I’ve had for a long time. I was breathless, tired and my airways were irritable and not playing ball, the gunk on my chest refusing to be moved around and brought up, so it felt like we weren’t really achieving much.
Seeing as I’m now sliding into my 4th week on IVs, the team wanted me to check in with the Doc to see if they wanted to do anything different. I’m loathe to change anything at the moment for several reasons, partially because I believe that once I’ve kicked the cold the drugs will do their job, but mostly because any change in IVs is likely to mean switching to one that I don’t get on with quite so well, which in turn would mean that they’d have to have me in and on the ward for a few days so they could keep an eye on me. I’m not keen on the ward at the best of times, but when I’m not getting a whole lot of sleep at home, it’s even less appealing because I know that I won’t get any on the ward.
While I was waiting to be fitted into the doc’s queue, I had another fantastic session of physio with the wonderful back/neck specialist, who worked me over really well. She did what she calls “mobilizing the joints” followed by “mobilizing the soft tissue”. One of the nurses said that the soft-tissue stuff looked like a massage to her, but the physio helpfully pointed out that the big difference was that massages are pleasurable.
Neck attacked, I popped across to the clinic to catch up with the doc, who reluctantly agreed to give the drugs a few days to see if they can kick in after the cold. We agreed that if things are no better by the weekend, then I’ll be straight in. If I’m picking up they’ll leave me out and check my progress after the weekend and we’ll see where we stand.
By this time it was well after 4.30, which meant a slow journey home in the evening traffic. We made an executive decision to take the scenic route which, although dark and not at all scenic, would at least guarantee that we’d be back inside an hour and a half, which is impossible to be sure of if you take the A34.
Back home just after 6 I was completely exhausted, to the level of a childish sense of having no idea what to do with myself. Every single part of me wanted to go to sleep, but I knew if I did I would have no chance at all of getting to sleep. Instead, I sat myself in the study chair to be as comfy as possible and surfed the ‘net for a while, before hopping into a bath to try and freshen up a bit.
It worked – to a limited extent – and we then managed to get through our usual Wednesday night where our bestest bud Dazz pops in to catch up on a Sky+’d ep of Entourage (our guilty pleasure) followed by this week’s Heroes.
With those out of the way, I didn’t have much else to do with myself than dump my exhuasted, knackered, b*ggered old body in the sack and pray for a good night’s sleep. And while I was there, I put in a small request to have a better day tomorrow, please, too.
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- Nope, we got nada!