Recently I’ve been feeling overwhelmingly tired and weak all the time and things are really getting to me, especially when I start pondering what it might mean. With the saliva and breathing problems I’ve been having too, the last week or so has been the toughest to date. I’ve been very low and very anxious, and was really questioning if I could, or even wanted to, carry on. I really thought it might be the beginning of the end.
To make matters worse, after 3 nights on the ventilator my carbon dioxide levels hadn’t gone down, which meant the ventilator wasn’t working for me and it has really scared me. I’ve adapted to the ventilator really well – apparently most people can only tolerate a couple of hours at first but I managed a whole night straight away, no problem at all. In fact I find it quite soothing. But the thought that this may not work for me is extremely concerning because without ventilation help I start running out of options. I think I have to accept that I’ve moved into a new stage of this disease – but I’m not writing myself off just yet.
I started getting especially anxious about getting washed and dressed as it involves being laid flat at times, which I can find difficult because of my breathing, and even more challenging when I can’t swallow properly because of thick saliva. So I’ve been asking the carers to minimise the time I have to lie flat. Which they’re always more than happy to do but I hate being a nuisance and I think that’s what triggered the morning anxiety and panic attacks. Completely irrational.
Last week I had two carers who haven’t been often before and not for some time. I like and trust them so it wasn’t a problem though it was a tad chaotic. When we finally made it downstairs one declared “oh that was like a bush tucker trial!” I said I’d never been likened to one of those before and she hastily clarified it was a trial for me, not them!
The respiratory team upped the rate on my ventilator yesterday (they can do it remotely) and this morning when I woke I definitely felt better. For a start, I didn’t have my usual 7am panic attack. Then when the carers arrived I felt up to having a shower, which did me the world of good. I was joking with them again too, which I’d missed.
They queried the term BAME, which was being discussed on the TV, so I explained it to them then pointed out that it’s my job to educate them. 😀 Later, I asked them to keep the water off my face when showering me (because of my breathing) and afterwards said “It’s also my job to be a diva”. One that they say I do very well!
At one point they put me on a slide sheet to move me up the bed – which they did with such force my head banged into the bed board! They were horrified but I thought it was hysterical – though I did ask if they would bring me a helmet next time and, as they were leaving, I said “thanks both. Actually I can see four of you.” 🤣
As predicted, my right arm is starting to go. Last week I was set up with EyeGaze technology. It’s what Stephen Hawking used – you look at a word on the screen and it speaks it. So clever! The device I’ll be using is quite big and cumbersome- it attaches to my wheelchair, so it’s not nearly as convenient as using my iPhone – and it’s actually really tiring to use, but soon I will have no other option. Meanwhile though, I’m still able to type on my phone, it just tires me out quickly. So writing these blogs might be affected unfortunately, though obviously I will try to do what I can and will continue using my phone as long as possible.
My oxygen levels will be tested again on Monday so fingers crossed for good news.
Meanwhile I maintain my right to tell my carers “I’m a diva, get me outta here!”.