Well the time has come to say goodbye to hospital and come home. People may think the hardest part of my journey is over- but it's intact just about to begin.
You see, in hospital there is a safety net of healthcare professionals all around you. There is someone to hand at the end of a call bell 24/7. If you are worried, there is someone to give reassurance, if you are sick or in pain there is someone to help, day and night.
But at home that disappears,myes I will still have carers, but they won't be here constantly. There is no doctor sitting close by or a nurse to dispense medication. It's us as a family that will now face the battles and a majority of the time that will be a lone.
Just because I am out of hospital, putting on make up and smiling brightly, it doesn't mean everything is better- everything is far from it. I am still very very unwell, I am constantly in pain and exhausted. I have no movement in my legs at all. I cannot eat or drink and I am running my feed so slowly it gives me none of the energy I so desperately need.
Our house is just not suitable for my needs which desperately needs to change. We cannot have me sleeping in the lounge forever, we cannot have me using the shower at my mans house and having no toilet facilities at home. It's just not good enough.
This is why we need my 'house' building so desperately, I just need space to live comfortably. I need independence and a space to call my own.
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