There have been times in my life where I have lost my independence whether this has been through past relationships or my health. I have had to rely on family, friends and ex-partners to look after me and get me through the worst. There were times I could hardly move and years where I spent the majority of the year in the hospital.
Around this time I would say I also lost my voice, my confidence was low and I was unable to advocate for myself. I became a shell of who I was; barely existing. Upon leaving a relationship a few years ago, I moved into a flat. It was scary at first, but soon I realised it was the making of me and therapeutic. Finally, I had a place of my own, the way I liked it, and I slowly started to build my confidence back up. My voice began to grow, and I realised how important my independence was.
At this time I was having a lot of prolapsed ileostomy refashion surgeries and sepsis, so the majority of my time was in the hospital. One day a social worker came to see me and told me about ‘Direct payments’
“Direct payments are local Health and Social Care (HSC) Trust payments for people who have been assessed as needing help from social services, and who would like to arrange and pay for their own care and support services instead of receiving them directly from the local trust.”
I live in Bournemouth, but my family live in Wales. During that time I realised I was putting a lot of pressure on my friends who would look after me when I was discharged which wasn't fair to them. During one hospital admission, Direct payments were mentioned two years ago, and I was in charge of hiring a personal assistant/carer.
I was 29 at the time and at first, I felt like a total failure having a carer come in for an hour every day (mainly to clean and lift the bins/bed sheets) However over time I saw what a blessing this was and in order to keep my INDEPENDENCE I needed this help. I know that without Yvette the last two years I would have had to move in with somebody or back home to my family so in accepting a PA/carer it allowed me to continue living on my own which is so sacred to me.
[Picture with myself and Yvette]
I pay towards my care every week which was worked out from my income. Although it was a bit high, I worked around it because I needed this help. A month and a half ago after a financial assessment, my weekly payment was increasing by £25 which I couldn’t afford. That meant for the month an increase of £100 on top of what I was paying a month which I was already struggling with.
Unfortunately, there was no way around it, and I have had to cancel my direct payments. I am grateful to my social worker who tried to get around it and for a wonderful guy Alan who was the budget officer and supported me throughout.
So now I move on to my next chapter minus this support (although my PA and I are still good friends) which is scary but with the help of friends and routines, I think it will be ok.
Due to the prolapse, I am not allowed to hover, lift bins or change beds I am grateful I have amazing friends and Steve (who hovered my flat on the weekend without me asking).
I know it will be ok and I understand direct payments are getting harder to get and contributions are increasing enormously. I know that if I have surgery soon for the diversion colitis that I could go back on to this if needed in the future.
I have worked hard to find my voice again and what matters to me the most is keeping my independence throughout my chronic illness and not losing myself like I did a few years ago.
We have all maybe at times had to have a carer or somebody to look after us while recovering from surgery. On the 11-17th June is Carers week where we celebrate official carers and people who have cared for us whether spouses, family or friends.
I would love to hear from you if you have a carer whether this is formal or informal?