Tory Majority Day 48: Packing and Pacing, Spoon Theory, Dodgy Knee and The Day Before The Welfare Cuts

Before I write this, I want to give a big thank you to everyone who reads my diary and has sent me kind, supportive and thoughtful words over the last week. 

One of the things that I’ve found about the ME community is that everyone knows how it is better than ANY medical professional or lay person.

Because we get such off-again-on-again understanding and hardly-there treatment, it’s the nice things that happen between each other that makes this illness bearable. This week it’s meant a lot.

Thank you again, particularly to those who are struggling with their own symptoms and have taken the effort to reach out. 🙂

Packing and pacing 

How do you pack up your life when you have ME?  The answer is with a lot of help and very slowly, pacing every step of the way.

I’m moving in 3 weeks. This isn’t long by anyone’s reckoning.

How I’ve tackled it is to use up all my available energy on packing.

I’ve hardly had time to think, talk about or do anything else. My fridge is empty except for some salad stuff and fish fingers, I’ve eaten a lot of raw carrots like Bugs Bunny, I haven’t cleaned for over 10 days now so my bathroom is a shocker and this diary is going haywire.

People have been offering their help as well which has been a life saver.

Hello spoon theory! I’m living and breathing you at the moment…I literally have no spoons left for much else.

Tackling anxiety 

I’ve spent a lot of time having to tackle peaks and troughs of a different kind – peaks and troughs in anxiety.  I’ve been trying to think more constructively about things as a way of busting the negative, panicky spirals that are going through my mind.

I have to do this. Panic is not an option for someone with ME. It depletes our energy reserves like a faulty battery draining out. Anyone would expect to find moving home stressful. It IS stressful.

However the fact that I’m moving whilst on Housing Benefit, my landlord doesn’t know I’m on benefits, I have no credit available to financially buffer any sort of move and that George Osbourne is going to announce welfare reform tomorrow slap bang in the middle of getting this sorted out is not helping my anxiety.

It feels like some of the big anxiety provoking things are being ticked off the list one by one, though. I definitely AM moving, it’s been agreed, I know the date, I won’t have replacement tenants through my current home deciding if they are going to rent it, and I now know what I need to do with the council as I’ve been there before.

I’m trying 🙂 I’m taking a lot of rest breaks and doing nice things as well, like watching my favourite films and sitting my soon-to-be ex garden.

I discovered this morning on the news that the overall benefit cap will be £23,000 per year in Greater London 

The BBC reported that George Osbourne has announced some detail in the benefit cuts.

Here’s what that means for me:

Housing Benefit – £10,800 per year.

Council tax relief – unclear to be honest

ESA Support Group – £6,000 per year.

= total benefit burden on the government of £16,800 per year.

Can this mean I’ll escape any cuts? I don’t know.

Housing benefit system and lettings contract 

My landlord runs his business with the loosest set of admin systems I’ve ever seen. In the 2 times previous to this house move he’s not returned a signed contract to me prior to the move.

“Oh, OK.” I hear you say, “no biggie, it’s only paper, after all. You’ve got the flat so why does that matter?”

It matters because when you are on housing benefit, you have to take your signed contract to your Council’s housing department in order to be given the right amount of housing benefit for the property you are renting.

The housing department then processes that contract and decides what benefit you are entitled to.

In the 2 house moves previously the landlord has not returned that contract in time for me to be given the increased rent by the council in time for the change of rent being paid. Hence I’ve had to pay the additional rent from my ESA benefit.

Although the Council said they’d refund me the difference, they didn’t so I lost out financially.

When it’s been the difference of £20.00 or so, that’s bad enough. This time it will be a difference of £100.00.

Uh huh.

So here’s what I’m going to do. I’m going to use the old contract, amend it and enter the new information, print it and take it to the council in advance.

This will only duplicate what I’ll ultimately receive from the lettings company anyway and will mean that it can be processed by the housing benefit team in advance of the move.

Dodgy, maybe. A practical solution, yes.

MRI results and appointment at ME Clinic 

I had my MRI results last week. My knee is “not happy” according to my GP. Basically I have a combination of a cyst and a crack in my bone which is causing inflammation.

Tomorrow I have an appointment at the ME Clinic. Now I know what’s wrong, I am going to challenge what I was told in my last appointment when I brought up that I’d had an injury to my leg.

I’m sorry but no respectable or responsible medical professional should have asked me why having an injury would prevent me from doing exercise.

I’m still waiting to hear about other test results after having more blood tests last week. I’m at the doctors more than I’m in my home at the moment!

Focus on the goal 

In a month this will all be over.

I’ll be in a new home, one that has no mould, no problems with electrical, expensive heating and is much, much better for me and my health and well being.

I’ll be settling in, making a new home and having a place that I feel I want to invite people to visit me in. I don’t invite people to this place so that will make a big, positive change to my life as well.

Focus on the long term. I have to do this to heal.

© Lindy 2015 

2 thoughts on “Tory Majority Day 48: Packing and Pacing, Spoon Theory, Dodgy Knee and The Day Before The Welfare Cuts

  1. Sorry for all the stress you’ve been through. And I can’t even imagine having to pack up all your stuff. Even with pacing it must be exhausting and leave you no energy to do anything else at all.

    I hope you are able to recover once you get into your new home. Sending you lots of healing vibes.


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