Just keep swimming…

As a general rule, when people do the whole “I don’t know how you stay so cheerful” speech I just look (and feel) uncomfortable until they’ve run out of metaphors. I just attempt to get on with life and splurge all my frustration out in my blog instead of at real people. But this evening I’m awake past a reasonable hour yet again and wondering if I just don’t sleep anymore.

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I’m not going to lie, despite it being half term and being at home, this week has been quite shit so far. We’d just got to a place where I could step back and assess the spoon situation and start looking at ways to maybe improve my health, then something unexpected and more than a bit scary starts tapping on the tank. Wake up fishy! Why are you sleeping?? Probably because I was blogging at 1am again.

I’m not my generally perky self right now. This could be related to having fully dislocated my shoulder last week which is still bothering me, this new work issue, increasingly dramatic looming threats of Ofsted and a general sense that I actually have no control over my personal standard of living. And there we have it in a nutshell. I am a control freak. I’ve lost control.

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Each morning I need someone to help me get up and dressed – I hate this, but it’s a fact of life. Right now, Mr Geek does this at a time and speed that generally suits my needs. What if he couldn’t do that? Do we have the financial reserves for a carer? Would the kids cope? If we did have to rely on a carer, could I be sure that I’d be ready for work on time every day? Would it be dignified or would I get yanked out of bed by someone constantly watching the clock and tutting at someone too young to be needing help from others?

My appetite is sporadic at best. I fly from nothing to everything and it’s not based on hunger, but my emotional state. I rarely eat from hunger anymore. What if Mr Geek wasn’t here to remind me to eat? He cooks the things he knows I will eat and that won’t make me ill. He sneaks vegetables into my soft, bland carbs. He accepts that me sipping on slimfast is better than nothing when my stomach doesn’t want to play. What if he wasn’t here to regulate my diet? Can I live on slimfast and gluten free pretzels?

Financially, we need me to stay working. We’ve looked at it objectively and are acutely aware that I’m fading fast in terms of stamina at the lower end of the year groups. Being in a chair doesn’t command the same type of authority as much as I used to and I arrive home exhausted. Where I once would put in another 3 hours of marking, I lay in bed on a heated blanket letting the oramorph do its thing. If Mr Geek wasn’t there to help me undress and crawl into bed, what would I do? I know the kids would help out, Tinypants has certainly helped me undress a few times and lives sitting in bed watching Netflix with me in our PJs. But how awful for them to not be shielded from my worst.

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We’d created a routine that had not only shielded the kids and the world from how bad things had got, but also me to an extent that I hadn’t realised before. Mr Geek does so much for all of us so discreetly that it isn’t until there’s the concept of him being taken away that it hits home.

It’s not just that I’d miss him (and I would, because he is my lobster), but this once fiercely independent woman actually can’t get out of bed without his help. Even if that’s because mentally, I’m not ready to let someone other than a very few select people see me naked. Of those handful, distance and health rather scupper any backup plans. Welcome to the inner selfish thoughts of the physically ineffectual.

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I wish there was a way to wave my magic wand and make everything better. I wish I could stick my usual fake smile on and keep going, but when Mr Geek being happy looks on rough ground, my lioness instincts kick in and I get frustrated that I can’t kick arses like I used to.

The previous me would’ve got angry. The current me just feels anxious and isolated.

The only thing to do is just keep swimming…

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9 thoughts on “Just keep swimming…

  1. Oh goodness….. I can relate to everything you say 100% and more (if that were mathmatically possible, which even I know it isn’t). Being ill like this – and not seeing an end in sight – sucks, it really, really sucks. The only thing that I can reassure you on is that haviing a carer – or several – in your life is really not that bad. Yes you have to get used to more people than you’d like seeing you naked, but surprisingly you get used to that pretty quickly and almost every single one of the twenty,maybe thirty, odd carers that I’ve had in the last 6 months has been just that – caring and you know what most mornings that helps to put a smile on my face. In the end though, you’re right, all we can do is ‘just keep swimming’ xxx

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  2. Your first sentence really hit me hard. It reminded me so much of when my husband was so far into depression (for several years, no exaggeration) that he was in bed most of each day and basically non-functional at any other time. People would tell me “Oh, you’re so strong” thinking they were being kind and supportive. I could never explain why, but hearing that phrase made me want to punch faces right and left.

    I was on the carer side of the equation for a very very long time, and yet I still recognize the anxiety you’re describing here because I had similar worries, only on the other side of the fence.

    In the end I don’t have any words of wisdom – there aren’t any, I know, that will make much of a difference. I just wanted you to know your words touched me. And that I’ve been following your story all along and think of you quite a bit. Sending (very gentle) virtual hugs and positive thoughts.

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  3. This post really spoke to me, I can relate all too well. Thank you 🙂 I hope at the very least your shoulder is able to heal and the work stress goes down. Take care, xoxo

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  4. If you’re in the UK and have savings under a certain amount, the council pays for carers. In my case as a single woman the threshold was £21000. Having carers is a huge thing to get your head round but they can make things so much better. If your husband didn’t have to get you dressed,how else could that time be spent? My lesson from carers, was get them in early so they don’t jump straight into doing personal care, that was a bit intense! Instead maybe get them in to help with cooking, cleaning, house stuff first. It’s a huge and scary thing to consider so message me on Twitter if you want to talk about it more x

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