(Un)Comfortably Numb

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!

15 thoughts on “(Un)Comfortably Numb

  1. You are wonderfuk! I dont know what you are going through so I wont offer any platitudes or potentially inspirational quotes but if it helps you must know how many people love and admire you and I’m so glad that our paths crossed so many times and what a laugh we always had. I still remember our Japanese spaghetti fight! Keep writing as long as you can ❤

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  2. Wonderfuk is a great word Sar, I like that one and I think I will adopt that one too. I hope they can sort out your meds soon love so you can be more comfortable and restful love. Love to you both my wonderful, strong, amazing friend.

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  3. Takes me absolutely ages to think what to say in reply to your posts, dear Sar. I want to say so much but then it seems like the wrong thing to say so I delete it and start again. Chirpy, positive, empathy, wishes – none of these seems helpful. I just want to send you huge love and support. Wish there was a way I could make it easier for you. My heart goes out to you both.
    And may the word wonderfuk be used everywhere from this moment on x x x

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  4. Sar 😘
    Your so right about loosing your hands, no help out there 😢 I was lay in bed this morning thinking the same, I’ve had enough 😠
    Oh my goodness your a real rainbow 🌈 you’ve had me belly chuckling 🤭
    As beautiful as your fanny must be, have you tried an indwelling catheter, I’m hoping I’m suitable as skin integrity is very important to me, hope you heal well, I use medicated talc to help prevent my skin breaking down, it’s wonderfuk stuff 😜
    Hope you find the right balance for you to feel more like yourself 🥰 your still in there, Your worth fighting for 🥰💪🥰😘

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  5. I too struggle with knowing what to say, Sarah, but I’m guessing that it’s better to say something than nothing. I’m grateful that you have this blog as an outlet, and I’m grateful for the insight it gives us into your world. For the billionth time, I find myself wishing I could do something to alleviate your pain and frustration, and cursing the cruelty of this illness. Love you, mate xxx

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  6. Sar, your honesty is something anyone reading your posts will admire. I know I certainly do and I’d rate that above bravery any day. Xx

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  7. Sarah, am so glad we had the opportunity to meet you. I have total admiration and you are an inspiration for many. Sending lots of love to you and Sue ❤❤ xxx

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  8. Hi Sara There is no denying you have had a few horrible  days I cannot stop relating to how brave you really areYour life has changed dramatically  and the will power you have is unbelievable I often think of you when I’m in bed (in a good way lol) and think how it would be in your shoesI pray for you that a miracle or a cure will come so you can get betterYou more than anyone  deserve to have a miracle Sue is your angel at this moment  in time as true love knows no boundaries  She is your strength  and your willpower the reason not to give up on the struggles  of lifeTo focus on trying and not giving in is definitely  on your agendaKeep on writing  about your days as it is well appreciated  by myself and all who want only the best for youLove Tina 

    Sent from Yahoo Mail on Android

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  9. Hey lady! Nope, not going to accept your comment about not being Brave!! Shit happens – you ARE brave!! and funny and amazing! (And sarcastic!!). Always was and always will be. You have had the ‘fanny’ to take this on and enjoy all you can out of each day while sharing the truth of the downright horrid times. In lieu of the huge uptake on ‘wonderfuk’, perhaps if there are any musicians out there they could get together for a virtual concert and do a remake of ‘wonder wall’? Umm? Well it sounds great in my mind… love you! 😘💕

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  10. Hi to U Two Luvly Ladies… am missing seeing u and only been off work for 2 days! I am (and All who know u girls) are struggling with u both..wishing we could do more.. hope the meds are sorted very soon..💞 u are an amazing talented funny person and a pleasure to know..and Sue too.. and of course yr gorgeous fur babies x

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