Difficulties Ahoy!

Just to make you all fully aware regarding the precarious situation me and Mum are in. In a matter of weeks, Mum goes in for a hip replacement operation which will necessitate 6 weeks to 3 months to recuperate. During this time she won't be able to look after me whatsoever and with no familial support, we rely on paid care.

Not only does my Mum have the hip problem to deal with but she also has arthritis in both of her shoulders and requires regular injections in them. My own health also is seriously compromised by having 11 kidney stones which cause pain and frequent urine infections - in fact, I have one at the moment and was unable to have my regular 6 monthly bone treatment because of the associated side effects. Moreover, I should be drinking more water but I'm unable to do so because that leads to needing the toilet more and hence, I need support to do so. It really is a 'Catch 22' scenario all round.

It's easy for certain people to claim that I need to be more flexible by going to bed earlier but how can I go to bed earlier when I may need the toilet during the night? Also, why should disabled people have to compromise their lifestyle to accommodate those who see you as nothing more than a set of hours to be completed? Or those who believe your life is far less important than theirs because you're disabled and hey, that's the way society is. Not to mention others who haven't any comprehension of Disability Rights, our history and politics, which understands that everyone has the same quality of life, regardless of impairment issues.

So why are disabled people expected to live on a meagre budget determined by a body of people whom they never see? Faceless bureaucrats from behind a desk deciding your fate which boils down to a set of hours and an account. It's quite a cruel joke is it not that those most vulnerable within society aren't treated with more decency and regard. Able to determine their own fate without falling foul of authority figures and going, "over budget".

I don't know what will happen in my case. Hearing about friends up and down the country living independently and using carers really doesn't fill me with much hope at all. I can only assume the Manchester/Oldham region is a very poor catchment area for PA's as we still haven't got anyone to cover a lot of the workload. I know I'll be damned if I'm being treated like an elderly citizen in an old folks home because people don't like working late or at weekends. All I can say is that I must be doing something wrong in comparison to my other disabled friends who enjoy life to the full without feeling like Cinderella and constantly watching the clock.

Mum was almost on the verge of cancelling her operation this morning because of everything still being unresolved. I can't honestly see a way through the fog unless someone pops up who is honest, reliable and trustworthy. Failing that, I may have to seek plough the den of iniquity that is agency care and I don't fancy that. Lord knows who is going to cover the additional shifts when Mum goes into hospital and comes out as the scant 35 hours a week isn't fully covered by any stretch.

One day I might finally be able to draw a line under this mess and have a set of carers and a budget that fully meets my needs. I'm holding my breath until that time comes.....