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Limbo Limbo Land

August 14, 2013

I’m not in a good place – literally and mentally.

The awful feeling of uncertainty is very claustrophobic. For the past four months we’ve been expecting to move tomorrow but now all of that is up in the air. And we’re stuck in this horrible place (literally and mentally) for the forseeable future.

The symptoms of limbo limbo disorder are:

* Feeling of total exhaustion and that my body is breaking down.

* Uncertainty over the smallest decisions

* Fear of uncontrollable rage.

Steven is feeling it too. Early mornings used to be a difficult time for him – all that empty space lying ahead that could trigger off a sensory underload meltdown. For the past two years, myself and the support workers have worked so hard on this and we’d reached a point where Steven has so much focus in the mornings, we haven’t had a meltdown for over a year. The last two weeks have compromised that and he needs so much reassurance just to start his day. He is getting by on very little sleep as he is regularly waking up at 3am with a concern about his future. Usually it’s about being taken back to the Unit – that always comes up when a big change is looming.

I don’t like the idea that we could have at least another three months of Steven’s distress. Provoked distress. Easy to alleviate distress. Intentional distress.

Practical matters seem like huge mountains and require so much energy. The council have created such chaos but refuse to accept any responsibility or accountability for it. That’s hard. The furniture for Steven’s new flat is being delivered tomorrow and thankfully I’ve got it sorted with the help of the fabulous support workers but the energy it has taken has been very consuming.

I’ve got a couple of hours this morning before I need to be at work. Going back to bed for a while and let myself indulge in the fantasy of what life might be like if I never had to encounter Hillingdon Council ever again.

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From → Social Care

4 Comments
  1. Kathryn permalink

    You have brought tears to my eyes – tears of understanding, frustration and disbelief. Such mixed emotions churn within me; I have three disabled siblings. They are not my problem, what is my problem – I expect the professionals to do their jobs.

    However you are doing a remarkable job and your son is so lucky to have you fighting his corner. But that is what so often saddens me most – those who don’t have an ‘us’!

    Keep fighting and keep focused what you know is right.

    • Edna permalink

      “I expect the professionals to do their jobs.”

      EXACTLY.

      A, web based, definition of a professional:

      ” following an occupation as a means of livelihood or for gain: a professional builder”

      Can you see the analogy with social work?

      At least you can sue a builder when their work is bad and causes harm.

  2. Meg permalink

    I am so glad you have really good support workers. We aren’t a bad bunch and we often are frustrated too by decisions made on high that make no sense to us either

  3. Sally permalink

    What you are going through is cruel. I am burning with rage.All of my friends are following your case with disbelief.
    I’m sure you know that you are describing some of the symptoms of (totally understandable) reactive depression. We are most at risk of depression when we feel powerless-and there are few things better to create this helplessness than dealing with waiting and waiting, with deadlines given then changed or abandoned.
    Legal cases such as you have already recently endured run a close second for creating stress/depression.And you are moving-most stressful of all experiences, without any extra torture. Oh, and the Housing Worker is on leave, you’ve just been told.
    Why doesn’t the Head of Hlingdon just come over and kick both of you to finish off ?
    That Steven is coping so well is a testimony to your care and that of his support workers.
    Please don’t give up. Keep shining a light., keep the newspapers informed-especially Private Eye (This deserves a section all of its own in their magazine.)
    All the support of this household.

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