There’s not much I can update you with this week unfortunately because I’ve mainly been in bed on medication to keep me calm. I reached a point about ten days ago when I decided I’ve had enough. I want out. Quite dramatic, I know, but still true. It’s not even “just” the MND, it’s associated symptoms such as either runny and excessive or thick and sticky saliva, feeling unwell and sick generally, mouth thrush and of course anxiety and depression.
Losing use of my limbs continues to be a major stressor. It seems there are all sorts of aides for losing use of your legs, but not for arms and hands and silly things like not being able to wipe my own nose or mouth upsets me out of all proportion, I think because I’m no longer in control. I’m trapped in my own body. When I wake in the morning I can’t even move my head. Nor am I able to swallow so I’m unable to drink anything – I keep hydrated via my PEG (feeding tube) and Sue occasionally wipes a wet swab around my mouth to keep it moist.
I’m also significantly more tired and weak now so whereas before I thought nothing of being washed and dressed and hoisted downstairs, now just being washed is often too exhausting for me and I need frequent rests. So I’ve been in bed pretty much all the time, drifting in and out of sleep, not even bothered to read or watch TV. I did force myself to get up for a while a couple of days ago, hoping (actually assuming) it would invigorate me but even though I was able to sit in the garden on what was a beautiful day, it did nothing to lift my spirits.
I’m now receiving daily visits from district nurses and am on a syringe driver. For those who don’t know (I didn’t), this is a needle which is permanently inserted into your body and slowly releases medication over 24 hours, rather than having to have several separate injections each day. My medication is for anxiety and sickness and I was on something to lessen my saliva too but that proved more problematic so I’ve come off that. Each day I’ve also had additional injections for anxiety. So I’m pretty spaced out much of the time, but nothing is helping the depression. There have been times when I’ve closed my eyes and willed myself to just drift off and never wake up again.
The district nurses are great and stress that they’re happy to come out as often as I need. In response to being told this I meant to say “wonderful”, but mistyped it and, thanks to my speech app having no auto-correct, I instead ended up saying “wonderfuk” – which actually I think is a fab word and might adopt it!
Sue is, as ever, being amazing. 100% understanding and supportive of how I’m feeling and there for me all the time. I didn’t think I could love her anymore than I already did but I do. I’m so, so lucky to have her in my life. When I’m feeling especially low, I now like her to stay with me while the carers do their thing, to comfort me. So she gets to see all that they do.
I’ve had a bit of sore skin in my groin, due to the pads, so I tend to get a daily updates on how it’s doing, such as “oh yes, that’s looking so much better now, look how lovely it looks.” I couldn’t resist grabbing my phone and commenting to Sue the other day “my fanny’s never had so many compliments!”
Sadly, humorous moments have been few and far between lately and I’ve been so weak, ill or miserable to engage with the carers at all, which i feel bad about as they must think I’m a miserable cow.
I’m hoping that once I’m on the right balance of medication I’ll feel a little less spaced out and a bit more able to cope. No more talk of me being brave please, as this certainly isn’t bravery. Wanting out makes me a coward. Sue’s the brave one. As some of you know, I wrote a poem for her a few months ago and I’ll post that soon.
In the meantime I’ll try to pull myself together again and feel wonderfuk!