disability

Life, bringing a cripple home

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So, another cripple post. Im fast approaching that magic number of 137 so my partners going to need something to read. At least something she might have some interest in reading.
So today’s is the next step, bringing her home. After a month of hospital she was finally allowed to return to us. She was excited and we were happy about it, it had been an intense month of working, driving, looking after two kids and having nanny around. Nanny being there was an immense help, but it also added it’s own complications because she’s insistent on spoiling the kids at every opportunity. Not that that’s bad- it’s a grandparents right- but it makes parenting so much harder.

So my partner comes home and hobbles in to be met by ecstatic children. Things weren’t easy, we had a combination of my partner feeling useless about being essentially useless, combined with her stubbornness and insistence on doing things and overdoing it, plus her natural ability to fall out with her mum at every opportunity. It’s strange, they clearly love each other but just wind each other up far too much. Honestly I’m sure it’s an equal thing, but I see my partner getting grumpy more often so I can see how it escalates to tears.
Things changed massively, especially once nanny returned home. At times I was left with essentially three children as my partner just couldn’t do a great deal. This increased her feelings of frustration about being ‘useless’ which shortened her temper and made her snappier. Especially when she overdid it (see stubbornness) and was exhausted. I was struggling at this point as work was taking a lot of my energy and attention and becoming more stressful, whilst the most Important thing – my family- was getting all that I could spare with regards energy, attention, time.
Things then got harder as money became tight, because I was working the state benefit support was minimal and we were left to work it out. As it stood once rent and bills were paid from my wages I was left with £30 to spend. This is before petrol, food, additional bills. And also before leisure spending. It reached a point where my partner was using online selling sites to sell something in order to free up a few quid to buy some vegetables for dinner. At this point out savings disappeared, followed by our overdrafts.

It was a tight time, but we managed, somehow things picked up and we coped. My partner was able to return to work which of course brought extra money in- though childcare costs of course ate into money too. The sacrifice there was my partners energy, she was exhausted by a days work which made her more frustrated and wore her out, so she wasn’t able to do much. This in turn frustrated her and there was a vicious cycle.

Through all of this I felt helpless. I wasn’t able to increase the money coming in, the money that was wasn’t enough and I didn’t have the energy to do enough to look after my family to the level they need and deserve. Helplessness is a strange feeling, Iv never really felt helpless, there’s always a solution, always something that can be done. But not this time. And it was a damaging thing. As Iv mentioned in another post I’m always right. There’s a certain confidence/cockiness/arrogance that comes from that, but this knocked my confidence. Made me feel like I didn’t have the answers, I couldn’t provide solutions, wasn’t able to look after those around me. The effects of that I’ll cover in a future post.

Bitterness. Bitterness is a strange one. Several times Iv been asked if I feel bitter. Bitter about the disability. Bitter about the effect it had on me. Bitter it’s changed how my life works. But I don’t know, I don’t feel bitter. Of course there are moments of anger, disbelief, even denial about the situation, but no bitterness. It happens, it would be better if it didn’t, or of it at least happened to someone else (selfish? Yes, but tough). Maybe there is some bitterness deep down but I don’t think it’s surfaced, or even really had an impact, there’s been far too much to worry about without it.

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Blog news, a refocusing

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So, I’ve realised that whilst Iv exceeded 100 posts (not sure if that’s all posted yet, but definitely scheduled) and only once have i actually specifically posted about my partners disability.
This isn’t necessarily bad because it means her being disabled isn’t necessarily controlling out lives, but I think also I’m skirting around it and not putting into words it’s effect on myself, so for those of you that care, more will be coming on that. For those of you that don’t, I apologise, more will be coming on that.

This blog was something I started to be able to vent, write, express and create I think if I continue to skirt around one of the biggest changes on my and my families lives then I miss a major venting and expressing opportunity.

Life, despair and always being right

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So, today my partner was in tears, disability and the restrictions or brings are getting her down- this is obvious but recently it’s been more so.
She doesn’t have the energy levels to do all she wants to and is too stubborn to take it easy or relax until it’s too late.

This creates a few problems for me,

Firstly, it reiterates my recent post regarding always being right and not knowing what to do, I don’t know how to help her. Or when i do, I don’t know how to switch her ears on to make her listen.
Second, her despair leads to my despair leads to us both struggling, and you can’t be struggling with two kids running around, they sense it, and play up to it
Finally, guilt kicks in again. She has repeatedly referred to me as her rock, the stable calm crutch to her crippled body, and now I feel as rocklike as jelly. I don’t have answers, or even supporting words, you see, all that time I was her ‘rock’ I was just cheating, by constantly reassuring her all would be ok, because all was calm it was. But now, when that doesn’t work I don’t have the answers for her, or the words.

It’s tough to reassure her and keep her spirits up when mine seem so crushed and non existent, but I do feel as though my recent lifestyle changes have had an immediate impact on my mood and temperament, I’m on a fitness kick and I’m making social steps, so with any luck my reserves will stock up again, and I’ll firm up to rock level again

Life, why can’t my partner read my blog?

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So, Iv recently topped fifty posts on here, I’m probably around the 50 if I ignore the test posts towards the start, and so far my partner hasn’t read any of it.
It’s not a secret, Iv told her about it, why I’m doing it (as best as I can) and even give her some topics I’m writing about. But I haven’t given her the address. Why not?
I don’t know, there’s very little written that she doesn’t already know so what’s the difference? I mean, sure, there’s a few posts that she might be a bit grumpy about, but I have no secrets from her, at least as long as she asks the question. Maybe that’s it, maybe I’m too guarded and the blog gives me a barrier to hide behind, but I haven’t really delved too deeply into my psyche, at least not yet.
Maybe it’s that it’s out there, it’s on the internet, maybe it’s a test, how well does she know me and how soon can she identify me? Well, I know me better than anyone and when i searched I had trouble finding me.

I think the real reason is that this is my dumping ground for venting, talking, recording, it’s not a place for her to upset herself. She suffers with enough self imposed guilt over the effect of her disability on my life (strangely she’s not so apologetic about the changes having a baby had on my life).
Whilst reading she might click at something and discover some other way she can upset herself over.

So if you do find this, this is stuff I feel you should feel guilty about

Breaking my things with your bottom
Farting constantly
Telling me off for trivial matters
Getting grumpy when I don’t have an opinion
Stabbing me with your toenails
Putting your cold feet on me
Apologising for cooking dinner
Not straightening the wheels of the car when you park
Not just chilling out sometimes
Nagging me when I drink beer

And here’s a list of things you shouldn’t feel guilty about

Being a cripple
Being tired
Not waking up for the boy in the night (although I would like to have a full nights sleep one day)

Understood?

Life, gaining a cripple

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So, here it is. Finally, all you fake followers that have been fake reading my blog have been waiting for it, so here it is.

How did my partner become a cripple.

Firstly, I should reassure you that cripple is her term, not mine.

About a year ago, i got a call at work from my partner, who’d put her back out lifting one of the children, I head home to help her and that’s where we start.

I should also point out that my partner can be a bit of a hypochondriac, always fearing the worst, the worst case has to be the obvious case. And she’s had a bunged up nose pretty much everyday since we met. Unfortunately, she does also get genuinely ill a lot too so it’s hard to be sure when it’s real or not

So I head home to find her in tears in bed where she’s essentially crawled.

this is a common one, she’s a sleepy nap loving person, but to find her in tears normally means pain, or exhaustion

After a little time of pain and pain relief wearing off, she asks to go to hospital, so we load up the car and get her there. She limps in through the front doors and i take the kids home

I’m not an arse, the kids were due dinner and bed

had I known how serious it would be then of course there’s no way she’d have gone in alone

I’m busy for a while feeding and bedding the kids, when she tells me it’s getting worse and the doctors are keeping her in.

still no real worry for me, it’s Sunday night,

Cue probably the most unsettled night of my life, with two constants,

1. The girl in every hour or so clearly worrying about mummy, only to be retucked in and reassured she’ll be home soon

obviously I wasn’t going to tell a 4 year old the truth (not that I knew much), by the end of the night she was expecting to be disappointed “what can those doctors be doing with mummy still, don’t they know she has to come home for breakfast”

2. Constant updates from my partner as things develop. I say develop, in reality it’s the opposite, her legs were numbing, she couldn’t feel her feet and couldn’t poo.

her not pooing actually sounds like relief to me

The hospital decided she needed a scan, but because it was urgent and their department wasn’t going to be open until 9am the next morning she would be blue lighted across the county (literally across the entire county) to be scanned there and then.

first point of worry, it’s serious enough to start spending resources on her

This I gather was a traumatic experience for her, she was indeed blue lighted south, in a bumpy ambulance

this can’t have helped

As it happens, she got the scan after 9am so there was no need to move her. I visited her in time to be told she was going to be transferred back.

no pain relief on this one, so even more traumatic

Next up is a visit from a neurologist to see my partners now completely immobile lower body, fully catheterised and deep vein thrombosis socked up.
He transfers her to his hospital

She then spends a month ‘glued to the bed’

this is how she explained it to the girl, who seemed to accept this happily.

I say happily, clearly she was terrified, but her behaviour the whole time was incredible, and then she had nanny looking after her so it probably seemed more exciting without mummy

The major worry point for me was a day I planned to take the boy to see her for the first time in about a week, she was excited of course, but the hospital parking was a nightmare, the entire hospital has a set visiting time, so for an hour each day there’s a queue up the road to get parked in the most ridiculous car park in the world.

We couldn’t get parked and this upset her a lot, clearly the fears of a lifetime of not being able to use her legs was hitting her.

I got parked, I risked a ticket parking infront of a building site entrance because there was no way she wasn’t seeing the boy that day

After that month I wake up to a text saying “my legs work,” she was able to stand, to fold her legs, and she wasn’t having to use a commode to poo

this was a major issue for her

A couple of weeks later she was home, I had a cripple to cope with and care for.

Ok, so not much real information for you there, but bear with me, there will be more to come