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 : ).
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 : ).
posted by Miss Fairy Sparkle at
2:03 AM
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