The Relationship Fairy

I don’t know what point I was trying to make yesterday, because it sounded V Grand in my head, and then – oh, well, anyway I hope it makes some sense.

The Relationship Fairy (RF)
‘So, about this hurt heart thing?’ RF
‘Yes?’ Me
‘Well, I’ve had a look, and you’ll be glad to know your heart has not landed splat on the ground. In fact, I put a trampoline there just in case. It cushions the blow.’ RF
‘Oh, Ok.’ Me
‘And the thing is that very soon you’re going to get asked out on a date.’ RF
‘Oh, right, Ok.’ Me
‘Right indeed. Fine. Now you’ll be needing this.’ RF
‘What is that?’ Me
‘Well it’s sellotape – in case part of your heart falls off and lands in your lap during the date. Just slap a bit of that on - you’ll be fine.’ RF
‘Blimey.’ Me.

Version Two – The horse of love.

Once upon a time you went for a very giddy ride on the horse of love. No saddle, no reins, and oh crap, you landed in a great bit pile of thorny thorns. Very very bad. In fact, a right pain in the epidermis, because the horse took you to the thorns several times before, and you said specifically, don’t take me to the thorns you damn steed, and the horse went la lee la lee la, and you went – you are FIRED horse of love.

Behold, in the field of thorns a pile of onions came beside you, and took off their coats, and you went – oh NO, the bit where I now cry my entire body weight. Yes, said the onions – and here is a book to write in and get the story of the thorns out into.

Behold even more – the onions summoned another horse, and the horse said – come on, let’s go, and the onions shouted;

Do not fear! Get back on a horse! We will always be here if you need cathartic food.

Except the littlest onion for he was frightened of being engulfed by real teeth, and he opted out of the whole you can eat me for solace and to help you reyhdrate thing.

ThE EnD

Lunacy v lunacy

Very Important Disclaimer.
I have had ME for lots of years. It is vital that ME gets better recognition as an illness where people have to be given allowances for what they cannot do, and not be pushed too far. At the moment, my life is not the best advocate for that. No parent at work knows I am ill, and I am aware if they knew I had ME then I too could be placed on the pedestal of ‘Oh, yes, I know this lady with ME, but SHE can work in childcare – so why aren’t you able to do a tiring job like that?’

Someone said to me recently that its not what you are able to do as a disable person that is important, it’s the choices you make. So, what I am advocating for here is merely my choice – it’s not a choice that everyone with ME maybe looking for, but I hope it makes sense.

I am realising that it is so important to me to be able to choose what I do with the limited energy I have, but to also have it recognised what I need when my energy levels are low.

I went for my medical this week from my GP for respite care for looking after children. I suspect that part of the success of her responses came because they find I’m tired but I want to do these conversations easier than I’m tired and I need help. I explained how much I was prepared to do in order to save up my energy so that one weekend a month I can look after a child in my own home. She was impressed – you have really thought this through – this sounds great!

Leading up to doing this, there has been such a lot of debate in my head. What if I project all my well bits, and then get the not well bits ignored when I really need it? What if I get accepted, and then one day if I have my own children have to fight for the opposite – I need help, and I have exactly the same symptoms? There is another lady with ME doing respite care that has been recently approved. The assessors are not deterred when you say you have DLA.

DLA is a benefit awarded on the basis of your ability to care for yourself and walk. I get low rate – and it’s awarded on the basis I have difficulty with both. Now, the more I’ve thought about it, the more confused I am. I feel like I am only able to define my disability on the boxes I have to fill in on that form – so what happens if I want to cook a big fancy dinner – or look after a child that requires both feeding and caring? According to the form – well, I need help with that all the time.

It doesn’t explain that no matter what I do, my concentration is poor and I feel ill – but that doesn’t stop me from being able to care for myself and another child. I just have to rest more, and adapt more in order to do it. However, no DLA, no WTC, and I would be unable to afford to live, as I am too unwell to work full time.

Being treated as a fully functioning adult at work, means when I do have to defend how I manage to look after children (you do know that they can run fast don’t you? you do know that they can have difficult behaviour?), is sometimes quite alien – as I have to find the words to explain to someone who is just looking at me with – you do know childcare is exhausting?

Looking after children can cost me a lot of time in bed. Now, I am not advocating self-destructive behaviour – look at me, what a good soldier am I, battling against the mighty ME by pushing my body to the limits! That kind of behaviour can lead to very bad relapses. What I am saying is – I would like to live my life in a way that if I have to spend days in bed to save up days of energy – I’d like to spend that energy on what I love, and sometimes that might be in a crazy way.

Pushing to do respite in my head is actually a sign of lunacy – but something tells me deep down – that it’s the kind of lunacy that works for me. Ironically – if I got approved, I’m already way more motivated to taking rests when I’d rather be doing things – because the goal looks so much more fun : ).

Ms FS’s really simple guide to doing well in interviews

1. Quite simply, turn up.
2. If when you are applying by phone you are asked whether you know the building where the interview is, it’s best not to confidently answer ‘yes!’, if you then are going to phone at once or twice later to ask angrily ‘tell me where your building is.’
3.If you do get lost, and then phone to ask for directions, it looks better if you then don’t turn up thirty minutes late, when you were only two streets away lost.
4.It may be wise not to reveal just before the interview starts, ‘Oh, I’ve just come back from working abroad because I found out I was working there illegally.’
5.Two not so hot selling points – I’m local, and at least you won’t need to give me maternity leave.
6.Tell me a little about yourself? Ok, if you pass the ten minute mark, that’s not little.
7.Complaining about your previous job for more than half an hour doesn’t sell.
8.Weaknesses that maybe better to hide include – ‘I’m actually quite gullible, but let’s not even go there!’

I have let my deputy manager know I will tell her when we have had a normal interview, in case both of us begin to lose the ability to spot it.

Concussion of the heart

Hearts really should come equipped with crash helmets. Then they wouldn’t get concussed so easily. See, that is what I have right now –concussion of the heart.
It’s kind of a shocking sensation and you wonder how you will cope with the bruises, and the swelling and the way the room seems too far away to focus on.

But, I’ve checked the warrantee and you can’t get a crash helmet, ever. In fact, you have to keep using your heart, even when it’s out of order. It’s the love law, or some crap like that.

In fact – you have to still keep loving, hoping and dreaming – even in the middle of concussion.

Like who decided that?!

I have been told I cannot do respite care on the basis of a doctors opinion I’ve never met. I protested. Now, I have to go to my GP, who apparently knows me very well, and be asked a huge amount of questions, and even have the size of my hips measured and recorded! I’m a woman – I have hips – but they don’t need labelled. Maybe I’ll get anaesthetic.

My heart must be like – ok, is there a reason you have to keep chucking me out of large buildings to see if I bounce? Life is an odd fish – all I know is I really believe I was meant to ask about respite – and maybe it’s to open up another opportunity.

After years of saying – but I am disabled, I really am – it’s an odd thing to be confronted medically with – yes, you are, and we need to see if you actually can do this. I am torn between defending what I can’t do – and defending – actually I’m really, really good at this.

Yes, I am ill, but yes, I am able. This week, I dealt with the police and social work again - and found that I have adapted over time to being able to do it without palpitations and sleeplessness. Playwork is a difficult job at times – because sometimes you have to involve a high level of adult intervention and yet make it look all normal. Luckily, I got a good game of Blood Soup with the littler pixies this week to fortify my creative inner, ‘please can we just play games instead of do real life’ child.