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Allergies

November 16, 2016

I’ve had to admit defeat. The fist of failure in the face. I’ve gone away for a few days. After this post, no internet, no phone until I can get my head back together.

It’s the new house. It feels like the Personal Budget all over again. I’ve written before how great personalisation is for Steven, for the support workers, for the council but a total nightmare for me. With all the bureaucracy involved in running a personal budget, my relationship with Steven and others has been seriously affected. I have no time. Since the move, it has felt like Groundhog Day. Fantastic for Steven as he loves the house and the close proximity to his family. But for me, there are so many problems with the house that need sorting, I’ve just added another layer of bureaucracy to my bow.

Do you remember that scene in Fawlty Towers where Basil is trying to get Manuel to understand and says despairingly, “I could spend the rest of my life having this conversation”? That’s my life at the moment. Monday was meant to be a peaceful day off. Stupid me, I actually started looking forward to it. In the event, I spent three hours on the phone to the council or one of their many sub contractors. The boiler continues to leak, which causes the water pressure to drop and then the heating and hot water pack up. This has happened every few days since we moved in. I can guess the details of the contract the boiler company has with the council – they get paid per call out. So to them, it is advantageous that we’ve had eight different engineers in six weeks. But not to us.

After the boiler, it was chasing up the council to see what they’re doing about the damp in Steven’s bedroom and the bathroom. Answer is nothing until 28th November.

So on Monday, after squeezing in a client in distress, doing the support workers’ wages and trying to sort out Steven’s council tax, it was 6pm before I noticed. I started at 9.30. My day of switching off.

I’ve developed an allergic reaction to the new carpet. I understand the symbolism and irony in that. I don’t have a leg to stand on.

With the advent of the Christmas adverts on the telly, Steven’s December anxiety has kicked in early. Yesterday, in the space of two hours, I must have repeated the timetable for 1st December over 50 times. Whereas this repetition usually eventually reassures Steven and he calms down, my head is currently mush and I kept getting things in the wrong order. With a clear head, I know that Slade appear before Jonah Louie on the CD we play whilst putting up the Christmas tree. Yesterday, I couldn’t remember the order and the anxiety cranked up. In the midst of this, the ninth boiler man turned up and I fruitlessly tried to juggle with dealing with him and telling Steven that Kirsty & The Pogues are track seven.

Something had to give. Whilst the support worker was doing Steven’s shower, I packed an overnight bag and sneaked out.

Normal service might be resumed as soon as possible.

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4 Comments
  1. Pauline Thomas permalink

    Mark there are many of us that know exactly how you feel and how difficult it is to keep focused when everything is going wrong. Not that this knowledge makes that any easier for you, but I, and suspect many others are feeling empathy for you right now.

    Yet you still can make us laugh with the carpet story

  2. emily permalink

    No fist of failure. Sometimes the body packs up after a serious event. Steven’s move was an epic, huge, beyond comparison event. You have every right to sit quietly somewhere and get your soldiers back in line. Take a breather Mr Neary…you damn well deserve it 🙂 xxx

  3. It will all be fine. All you or Steven’s advocate can do is report out of hours and make some noise politely for effective and timely repairs after so many incidents. Use the crap labels of ‘vulnerable and disabled’ liberally and mention any difficulty Steven has with regulating his temperature if applicable. Request alternative portable heat sources for good measure.
    The house is going to throw up loads of problems whilst adjusting to the new usage of water/heating ditto waste water ! , it may have been in a state of semi-use for years. Supporting Steven to run his new home is a massive extra workload obviously but no one else is going to keep the show on the road if you don’t. No net and no genuine alternative to you being the glue. Hope the play list comes back to you in time for tree trimming and that the boiler holds out for the remainder of the winter.

  4. Frances Steepe permalink

    So get it, enjoy your rest

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