Trials & tribulations

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!”.

4 thoughts on “Trials & tribulations

  1. You just cant get the staff!!😅🤣 iv told you more than once ” your very demanding sarah” 😁 your amazing and entitled to have a diva moment or 10 lol miss you loads see you soon xxx

    Liked by 1 person

  2. Still one of the funniest things I read each week! I hate what you’re going through and wish there was something I could do to make things easier for you. But I love your commentaries and I’m so in awe of your amazing attitude. The way you adapt to every new phase is remarkable.
    Loads of love and blessings to you and Sue xx

    Liked by 1 person

  3. A Diva indeed, a natural! So so very glad you are committed to your blogs, I love them and so realise and understand there may be longer gaps. Saw an old Big Bang episode that featured Stephen Hawkins last night. I need to see you in action!!! (Perhaps featuring a rather special shiny helmet!?). Love you lady!! X

    Liked by 1 person

  4. Hi Sarah, it sounds like this week’s been really hard. I hope that the increased flow rate on the respirator will increase your energy levels and give you the boost you need. Your blogs need to keep coming, they are so honest. I thought you might like to hear a little of us in Wiltshire during lockdown. At home life is not so different to before, we live in a village right on Salisbury Plain and have lots of space to get outside. We got a new puppy just before the restrictions began so the kids are happy to be home playing with him. Home schooling is an ongoing chore and my 13 year old son certainly finds it challenging, I don’t blame him at all. I have moved to live streaming my yoga classes, this transitioned pretty seemlessly so I regard myself as lucky. My eldest, Joe, had his Italian ski season cut abruptly short (no surprise there!) but remained well and is now learning how to decorate. He has a place at Cardiff in September to study Marine Geography but who knows what will happen. I think freshers week will not be as we remembered it! Please keep writing x

    Liked by 1 person

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