Independent Living - First Steps in stopping your house eating your energy - Thinking

A house is a big thing. Lots of square feet, lots of things filling the square feet. And depending on who lives in it, it gets used in different ways.

One of the first things I realised when I got this ill was, that the way a healthy person uses a house and the way an ill person (called Meeps from now on, short for people with ME, as in ME people = meeps) uses a house is completely different.

Healthy people can use all the space, they can rummage to get something out, use it, and put everything back without even noticing that's what they're doing. Meeps are so knackered by the initial rummage, or even getting to the cupboard, that nothing gets put back or even used. So Meeps end up with an astonishing amount of 'stuff' surrounding them that they use often enough to not want to have to stagger a few meters to a cupboard to locate (they might not even be able to get out of bed) but not so often that it's used all the time. Depending on how knackered energywise the Meep is, this minor chaos spreads outwards like ripples in a pond. Healthy people can say, spend a day tidying up, at the end of it they're tired, but hey, it's done. Meeps can't. So this 'decluttering' I'm doing will eat my elephant a bite at a time - Meeps have to be smart about finding ways to do things differently, cutting a task into chunks that can be tackled bit by bit.


Which is why I'm finding the Appartment Therapy January Cure useful. Cos that's their approach. Albeit for healthy people. This first week, what's been most useful so far was Day 2 - here all about THINKING about your house. The task was to spend an hour walking around your house looking at all the areas that need fixing, whether for DIY, or decluttering, or they don't work for your lifestyle.

Papers littering half the sofa bed. Regularly trampled by cats, and makes it hard to change the bedding and to find anything. That's a troublesome area to be sure!

STEP ONE - THINK ABOUT YOUR HOUSE - WHERE ARE THE TROUBLESOME BITS?

1. Stay where you are right now. Don't move! DO NOT actually DO anything to deal with what you see.
2. Look around you just in the ROOM you are in. 
3. Write down (or get carer to, or dictate a note on your phone, whatever works for you) the areas that need dealing with and why. Maybe they are dirty and need cleaning, or something is broken and needs DIY, or something is cluttered, or furniture is in the wrong place.
4. If you can or want to. Take pictures of the room so you can see 'before' and 'after' progress eventually.
5. If you are well enough, after a break, travel to another room and do the same thing there. If you aren't well enough, then ask your carer or someone to take photos of the room going slowly from one side to another until they have taken pictures of it all, including floor and ceiling if necessary. Then look at those to make a list for that room.
6. Aim to eventually have a list of 'troublesome bits' for every room in your house.

   

   Christmas decorations are still up, and there's a pile at the end of the sofabed that needs dealing with. Another troublesome area!

STEP TWO - THINK ABOUT WHAT HELP YOU NEED FOR THINGS ON YOUR LIST?

If you can't do things yourself, how are they going to get done? Have a think about what help you need and where you might be able to get it from.

For example:

DIY jobs - can partner or family or friends help?

Does your landlord or housing association or council have a responsiblity to fix anything? Look on the Shelter Charity website for information on the new rules about how long a landlord has to fix it before you can ask the council to step in, do the work and bill the landlord.

For things that are not the landlord's responsiblity, does your local council have a Handyman Service (ask your social worker, often if it is a health & safety issue, for example putting up curtains needs a ladder, you can get this done for free. Other jobs may cost £10 per visit (for 3 jobs in Northumberland). Look under Housing and Repairs type headings on the Council website.

Do you have friends or family who can recommend a handyman if the Council can't help? Sometimes Age Concern will help on a one off basis if there's no other alternative even if you're under their normal age range.

Cleaning - Is cleaning included in your Care Plan? The new Care Act includes keeping the environment in a reasonable state, your Social Worker can either authorise regular or one off cleaning calls from their appointed care agency, or incorporate it as part of your regular carer calls (which is what we've done).

For example, since the new Care Act, 2 tasks - hoovering the living room because I spend so much time on the floor cos of the crawling and, ironing bed clothes and pyjamas cos I spend so much time in bed so it's important to help prevent skin problems - have been added to my Care Plan and the carers now have an hour a day 7 days a week so these have been scheduled into it.

And because the carers don't manage to do things like dusting, the Social Worker is asking for on additional half hour a week to be added to my Care Plan so that I don't end up with respiratory problems.

Sorting - Again the Social Worker can authorise one off calls to help with sorting out/ decluttering under their 'enablement' procedures. This doesn't mean you are put onto an 'enablement' path (which presupposes you will be better soon), it's about making your living space habitable and about health & safety for you and your carers. However, budget cuts are biting! So that might not be possible.

Do you have friends or family who can come and show you items so all you have to do is say 'keep, bin, recyle, sell'? Or can your carers do that with one or two items a call? Are you capable of sorting through, say a small pile of papers, if your carer brings them to you and also sets up a set of 'keep, bin, recyle, and sell' bags or boxes so you can just drop the items into them by the side of your bed?

You don't have to be a Roman Catholic, but they have an organisation called St Paul de Vincent where someone can come and use their energy helping you declutter. You have to make the decisions, but they can do the handling. They might be able to take items to charity shops for you etc.  If you are a member of a church or other community organisation, they might ask their members if anyone is willing to help.

Your carers should be perfectly capable of taking rubbish and recycling to the main (wheelie) bins for you.  Some items can be recyled but not via the bin men. If you don't have anyone who can go to the main tip/ recyling centre for you, either (a) don't fret, do what you can and that's enough. Just put it in the main bin for landfill or (b) phone the council and ask them about big items, they might let you put a few bags of smaller items at the same time if it works out that way for you in with the single collection price.

Some charities come and collect large items or furniture - British Heart Foundation take electrical items for example.  You may get bags put through the door, to fill for charities.

One thought with this, it's very very embarrassing asking for help, and difficult. For a start you have to actually ask, and then what if they don't understand and try and rush you or criticise you. So part of this 'thinking' stage is about coming to terms with both asking for and using help.

Another big thing is the anxiety about having so much stuff, not knowing if you'll need it, hoping to use it in the future, it representing who you used to be etc. Don't worry about that now. All this stage does is help us to quantify what needs looking at and dealing with. We're not actually doing anything yet.

The parentals got me a shade for the lamp this week, the lamp came downstairs because that's where I want it to live. Except there's no space, so it's living on the food trolley. Which I need to get my dinner from the kitchen to the sofa. The boxes on the bottom are recent purchases for DIY for others to do Oops! Definitely a troublesome area!

STEP 3 - LOOK CRITICALLY AT YOUR LIST

Decide

• which things you need help for a whole task
• which things you need help with for some of a task
• which things you can do yourself.

Maybe if you have family or friends or carers, you can go through the list with them and they can look with fresh eyes and see if anything has been missed off that you didn't see. Or if they have any bright ideas on who or how they can be tackled.

STEP 4 - STOP AND HAVE A REST!

That's it!

The table. Every inch covered with stuff that doesn't belong there. So that the lamp can be put on it. Another troublesome area!

So for me, I'm in the Living Room. This is what I see:

• I have the right pillows for support and bedding on the sofa bed and the floor is clear (yay!)
• Half the bed is taken up with a litter of papers (including christmas cards still not sent)
• My christmas decorations are still up
• There's a couple of coats on a chair that have no home
• There's piles of 'stuff' in bowls that need sorting
• The 'instructions' for household items file has no home and sits on the floor making hoovering hard for the carers.
•  The table is covered in stuff that is currently homeless or needs to be sent to someone.
• My wheeled drawer unit is cluttered on top and chaotic in the drawers.
• I own curtains and a rail, but they're not up and in a month or so the developers will be in the field building houses so I need them up. The curtains are in a wooden chest that will be empty space afterwards.
• There's a lamp on my food trolley that needs a home so I can use the trolley. 
• Nothing's been dusted since before christmas
• There's spider webs all over the ceiling
• Patio door windows are covered in cat & dog nose & paw prints inside and out.

PS I should say that the Living Room has already been periodically 'attacked' and sorted, so it's my least disasterous room. It's 'nearly' there...

Wheeled drawers used as 'bedside cabinet' aka dumping ground by the sofa. Final troublesome area!

So my list of things that need doing is:

1. Get curtain rails and curtains put up - by someone - work out who!
2. Get decorations taken down - need help from mum, and think about where they will live til next christmas
3. Think about a home for the coats, instruction booklets etc. cos I know they need to be kept - think about it.
4. Sort out papers into stuff to be (a) binned, recycled or shredded, (b) put in a pile for filing and (c) put in a pile to be dealt with - can do myself.
5. Do christmas cards and send them out, send out stuff promised to people but not yet sent - can do myself and family can take to post office.
6. Tidy up the drawer unit, top and drawers - carer needs to help to hand me drawers.
7. Sort out bowls of stuff - to sell, bin, recycle or keep and find a home - carer needs to hand to me.
8. Sort out top of table and decide what else will live on it as well as the lamp - carer needs to hand to me.
9. Surfaces need dusting - carer will do if I get the extra call time
10. Ceiling needs sweeping - carer will do if I get the extra call time
11. Windows need cleaning - ask dad.

And finally, I'm not entirely sure that the furniture is in the right place in the room to make it easy to move around and use it. But that's for another day!