4th October

Woke up to another cold day. Really hoping it warms up for the away day but as long it stays dry I’ll be happy. Quiet night, still not sleeping, but I got some rest at least. Woke Dick up for work and he didn’t seem to want to move either. He’s so tired but it’s just all the stress of the last few weeks catching up with him. He’s a lot better to be around when he’s chilled. Once he left I poked the bear, I mean Joy, into life. God knows how she’s going to get herself up Thursday & Friday as I’m not here.

Logged on to see an email from Harvey.

H: Yes yes yes, not long now xxxx
Just back from the H long day… She is still on the ventilator and will be for the next 7 to 10 days. She had some cramp last night so that’s a good sign of nerves reconnecting.
Night babe, noodles and a glass of wine then bed for me xxxxx
Xxxxx

A: Sorry to hear she’s still ventilated but good to hear the nerves are reconnecting- hopefully this will soon improve and she becomes more comfortable. Thanks for the update.
Hope today is a better day and there’s some more improvement xxxxx

Went to work and cracked on with my boring job. I really must stop moaning about it. It’s a means to an end and most aren’t that fortunate. I saw an email from Harvey.

H: Morning, did you sleep?
Thank you for your kind words, things get a tiny bit better each day it’s just going to take months, now we have accepted that things are a little easier. I’ll speak to work today to give an update.
Xxxxxxx

As I was about to reply to his email, I received the update that he’d sent his boss & the colleague that visited him Friday. My colleague Nigel blind copied me in to the reply to him so I could see it.

Wife is still not breathing for herself and is paralysed from the neck down, she has regained facial muscles and was able to smile over the weekend, she also managed to touch her thumb and forefinger together on Sunday, although this has now diminished, Muscle cramps are starting to occur which is a good sign!

She is frightened whilst in a great deal of discomfort and very frustrated as she is unable to speak and it transpires I am rubbish at lip reading although it’s becoming easier as her muscles return.

She is on Day 2 of a ventilator weaning process and if her chest and lungs are strong enough then she will be off the ventilator in another 5 days (absolute best case), once off the ventilator the next stage is to strengthen her neck muscles to enable her to swallow and cough then the tracheostomy can be removed.

I am with her 12 to 18hrs a day giving Physio and massages every hour to give her the best and quickest chance of recovery, it’s not easy but I thank you for your support, every day is a small win!

The video attached is from the GBS foundation and may be useful to share with The Team and colleagues, it puts quite a positive spin on things, unfortunately we are in the bottom 10% of the syndrome symptoms and conditions. 

Once again thank you for you continued support and kind words.

Harvey & wife

I’m not going to lie it really upset me. I knew he was keeping how serious this was from me so I lost it when I read it. I’m a big girl, I’m certainly not stupid and if he’d only keep me up to date and be honest I’d cope with things a lot better. All I could think of was how on earth he could leave her to come away. I mean either he’s a stone cold heartless bastard that wants a shag and is willing to leave her for that, or he really needs a break and it’s an ideal opportunity and I’m an added bonus. I certainly don’t think I’m a factor in any of it, yes I’m a nice to have on the back burner and I’m a nice distraction from it all but there’s a little bit of doubt creeping in now. Why the burning need to explain how very terrible it is to the boss, to then come to the away day and why do I get the watered down version of what’s going on ? I’m very confused. I replied to his email.

A: Nigel sent me your update in confidence.

Sounds horrendous. I hope she improves quickly. I now understand why you only give me small updates eventually. I appreciate you need a break but I know you’re only coming to the away day for my benefit, I understand if you stay where you are, she sure as hell needs you there far more than I do and it’s completely understandable. I meant what I said, this can wait xxxxxxxx

H: Call you in 5 or 10 xxxx

A: I’ve got the CR until 11 so I’m alone if you need a chat xxx

I realized he could probably tell from the email that I was preparing to back away from this. Luckily the CR was free so I went in there and waited for 20 minutes for him to call me. We chatted and I spoke to him about the situation and how I felt that there was more going on than he’d let on. He said he was a completely selfish bastard and was doing it for him, not for me. Not sure if he was just telling me what he thinks I want to hear. We will see. I’m torn as to what to do. I so want to see him and have the overnight as planned but feel like a complete bitch to think I can do that when she’s so ill. And I know it’s his issue, his problem not mine but I can’t help but feel I’m a horrible person for wanting it.

I carried on and tried to get my head on straight. Went out shopping at lunch and bought stuff to take away for the away day, little snacks to keep my energy up, and more underwear as they too have a sale on. I took a photo of my shopping on the conveyor belt with the underwear front and center and sent it to Harvey while I waited in the queue.

A: More underwear xxxxx

H: Nice, for you not me I hope! I’ll have the chocolate and midget gems xxxx

A: Damn the midget gems are for you!! Spoiled the surprise now 🙈I plan to take care of all your needs………!

H: God bless dyslexia and small text, I read that as you were going to take care of my anal beads……

A: I’ve just pissed myself at my desk and gone way more than 50 shades of red thanks for that 😂😂 xxxx

H: Too funny, shame you can’t tell anyone xxxx

A: I’ll tell the blog that way we’ll never forget 😂😂 xx
Keep smiling xxxxx

H: Lol, I haven’t got he link since you I subscribed me, I’m happy either way xxxx

Went home, cooked tea, packed for my two nights & days away and generally took it easy. I sent him the link to the blog.

A: It all goes on there! If you want to read you can but it’s not exciting it’s just me emptying my head.

xxxxxx

Spent a very busy night, packing for the trip, cooking tea, washing, sorting Joy out for the next few days. Dick was really late home and came back in a shitty mood. Surprise surprise I’m going away with work so he starts acting like a complete twat again. I have this every time and although this time, for the first time ever, I will be misbehaving he doesn’t know that for that a fact and it’s quite ironic that he gets paranoid about it and this time it’s with a good reason. I sorted tea, sorted out Joy’s hair, I had a bath and when I came down stairs at 9.30 to sit down finally, I asked him to find something we could both watch and he consequently went to bed. Fucking marvellous, I’m not going to be here for 2 days so he fucks off to bed. It’s not like I expect any actual affection or genuine emotion, god forbid I actually need any but it would be so nice to think I’m going to missed or at least pretend but no. He’s fucked off to bed so I’m listening to music on my own. I might as well live alone. I’m sure I’m only here to look after them all. I won’t even be missed until one of them needs something. Joy will miss me but that will be all.

Feel more than a little bit sorry for myself tonight and well and truly under-appreciated! Let’s hope I get some sleep otherwise grumpy Ava will appear! I’m off to bed.

 

 

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