Monday, 10 June 2013

Carers Awareness Week

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Hello :)

I haven't been on here for quite a while, mainly for good reasons :) I did my zip wire for AYME and raised £557 in the process which is amazing. I've been working hard for exams, and hopefully will finally have both my maths and textiles A level next year if health stays good! And at the moment, I am resting up ready for my trip to London which I am super excited about :) Health wise I took quite a dip, then been up and down, and hopefully heading in the right direction now :) Stable-ish I like to call it ;) I don't really think about my health in too much detail though, it's what I have and I just want to make the most of what I've got :)

 Linking on to this, I really wanted to do a post tonight. I don't really talk about the help I need, but it's Carers Awareness Week starting today, and a lot of people don't see what hard work and dedication these carers have. I have 7 main carers, which are all fab :) They do so much for me, from making food to taking me out, and so much more in between. Being a carer for me is a tough job, with my ME it's not like being a carer for someone 'just' with mobility problems or anything like that, you need to be a mind reader as well. My carers need to be able to know when I need things, when to leave me and when to help me without being asked. They need to take one look at me and decide whether I am well enough to talk today, whether to let me sleep or whether I can sit up in bed. It's an huge task, and when I am bad, I am not 'with it' and sometimes so tired I cannot communicate properly so all these decisions are critical. It's a balance between stretching me but not making me worse. It's deciding why I am extra poorly that day, and if they need to phone the doctor or hospital. Being a carer is a 24/7 job, and you don't get to choose when I will need help. You have to try get a balance between being a carer and caring for yourself, and this is really hard when you have someone with such an unpredictable, and sometimes very scary, illness. Some people you wouldn't have a clue had so much on at home. Any one of my carers always have a smile on their face and you would never tell they have such a hard job when they get home! So I just want to single out my 7 carers who care for me every week who I wouldn't be here without (quite literally). I can't care for myself, it's hard to admit, but with the help of these beautiful people I can live more of a 'normal life'.

My mum, Tracy. My dad, Steve. My sister, Abi. My boyfriend, Michael. My 3 daily hired carers, Charlotte, Terri and Emma. They are all fabulous. Not one of them has ever complained. Not one of them has not ever been scared seeing me at my worst. All help me daily in so many ways, and really have made a huge difference to my life :)

Lots of love, kate xx