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Useful Energy Saving Tips

updated 06/01/17- if you have any more tips please
email Von
 
ME Awareness Leaflet and Comic Strip for public Care and Social Services Computer Phone Food and Drink Household Items/tips Mobility/Aids
Stairs Travel by car Travel by Air Preparing for and coping with power cuts and snow Emergency Coping with Christmas Miscellaneous

ME Awareness Leaflets for General Public

This leaflet (an A4 page printed both sides and folded to make an A5 leaflet) is for the general public ie it is simple, in larger print, and with bold and boxes to make it stand out.

Both this leaflet and the comic strip below are very useful to give to friends, family, carers etc and also ask them to put some in eg workplaces, waiting rooms, libraries, church etc. I try to give it to all callers to the house - even lost lorry drivers asking directions! My motto is 'No-one escapes without'.

Download ME Awareness leaflet for general public
NB You need Adobe Acrobat Reader to access it which you can download for free
here

or download Open Office version OO ME Awareness leaflet for general public

If you just want to see text (NB may not be up to date) because you have not downloaded adobe reader, click ME Awareness leaflet

ME Awareness Comic Strip for General Public

This A4 page comic strip is an excellent illustration of how Post Exertional Malaise affects people with ME, useful to give to friends, family, carers etc with the above ME Awareness leaflet.

Click here - to download the comic strip, created by Laura Chamberlain

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Care and Social Services

Assessment of Need
If you are having difficulties looking after yourself or preparing meals you can have an Assessment of Need by a social worker. Referral can be through your GP or you can ring your local social services department (number in the phone book) directly.

It is useful to make a list of bullet points of how ME affects your ability to do things and also of the care you need to save energy explaining and in case you forget.

Social Workers can provide meals on wheels or home care to help with bathing/dressing/meals etc. They can also refer you to other people, eg. an Occupational Therapist who can provide you with a wheelchair or stairlift or other energy saving equipment.

Occupational Therapy Department
Social Services Occupational Therapy Department can provide an array of energy saving equipment, from shower stools to wheelchairs, perching stools to stairlifts, recliner chairs to electric beds.

If you are not already assigned an O.T. you can be referred by your GP, through a Social Worker or you can phone direct (number in your local phone book) and ask for an Occupational Therapy assessment. It is a good idea to have an assessment as they can suggest things you may not have thought of!

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Computer

Abilitynet (a charity which aims to help people with disabilities by funding computer/communications equipment)

ITcanhelp.org.uk (a network of volunteers who are able to offer free local computer assistance to disabled people)

Computer setups for the reclining a disability website with useful tips - Alison H

Automatic Form filler - Cat
Use Roboform - a free download, to remember passwords etc. Saves a lot of hassle, not to mention typing (great for filling in name & address in when shopping).

Low level table - Von
Rearrange the furniture, put the computer and mouse on a low coffee table so you can sit in an armchair with your feet up and just move the mouse, with the keyboard on your knee if needed

Wireless keyboard and rollerball or mouse - Victoria
It is possible to get a "wireless keyboard" - with rollerball built in or wireless keyboard and wireless mouse.

Extension cables and Tracker ball - Kevin
You can get extension cables for your keyboard and mouse if you prefer a cable to wireless ones. I managed to operate my computer in bed that way. Its even easier if you use a tracker ball instead of a mouse. You can get a small one which clips onto the side of the keyboard. Don't fall asleep on top of it, it hurts. :-(((

Wall mounted monitor - Nick
Get one of those brackets for wall-mounting a television for the monitor; the angle of tilt and height can be varied in good ones, so it should be possible to lie down looking up at the screen and have the keyboard in one's lap. Of course it needs a wall near to where you lie/slouch.

Speech Software - Jo
Speech software reads any text in a variety of synthetic voices if you struggle to read long or complicated documents on your PC.

Reduce noise from your pc - Chris
If you are noise sensitive you can fit a super quiet power supply and CPU cooler to your computer. Details can be found at
http://www.quietpc.com


Finger Mouse - Mike
It fits on to your index finger and allows you to do the same as a regular mouse, but at the same time allows you to sit back in the comfort of your chair, and of course eliminating any compression with muscle pain etc.
The lead is much longer than a conventional mouse, and was originally designed for lap- tops and presentation, allowing the person to stand back from the computer. I got mine from Staples , but you should be able to get them in most computer stores, PC World etc.

Break Reminder
software to tell you when to have a break from the computer available from www.cheqsoft.com

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Phone

Hands Free Phone - Jo
If you have trouble holding a telephone for too long you can get a hands free one. Call BT on 0800 800 150 for a free guide on help for disabled customers (you can also get priority repairs etc.)

Stop Junk Calls - Mags
I got Bt's TPS service on my phone and hardly ever get any junk calls now. You can register online at TPS to set it up


Cordless phone with headset - Jo
I have a digital cordless phone which I love, but find holding it to my ear really tiring. With much digging I found out that some Panasonic DECT cordless phones have headset jacks on the side.
For further information on suitable models contact Panasonic
If you buy a headset do make sure you buy a headset suitable for a DECT phone though, NOT a mobile phone!

Hang cordless phone round your neck - Von
I kept mislaying mine and wasted energy looking so have made a bag out of a pretty embroidered specs case that just fits and sewed on a cord so I can hang it round my neck and it is brilliant! You can get phone pouches on EBay too.


Answer Phone - Serena
so friends can leave a message while you are resting


Caller Display - Wend
so you can choose who to answer as some callers are more tiring


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Food and Drink

Avoid rolling out pastry etc - Von
My sister in law makes a fat sausage of Welsh cake mixture and chills it in the fridge or freezer till firm then cuts it into rounds with a knife.
I did the same with Jusroll pastry to make little pastry tops to have with stewed fruit or stew and froze them for later use. I put it on a tray and did it all sitting in bed!

Lemon cubes - Von
Squeeze lemons on a good day and freeze in ice cubes ready for cooking. I get several organic lemons, grate the zest and put it in the cubes before adding the juice and I also add fresh thyme to some of the lemon cubes.

Microwave Vegetable Steamer - Von
- saves getting up and down to see if it is boiling and turning it down, saves straining as you just take the basket out, saves washing pans and colendars
Fresh Veg:
Put a little water in the bottom and cook the veg. You just need to get the timing right!
NB.For potatoes, put in basket, cover with boiling water and cook for 15 mins.
Frozen Veg:
Put in basket, cover with boiling water and cook about 5 mins. I found they didn't steam well.

Slow Cooker - Von
My carer who comes twice a day, puts a stew in the slow cooker in the morning and it is ready in the evening. Otherwise she never has time to do a soupy meal!

Chopping Knife - Jan
Some months ago I bought a chinese style chopping knife as an experiment, to see if I could cope better with chopping veggies etc. I can - probably because the blade is wide and prevents wobble and you can apply extra pressure with the other hand on the back of the knife. The chopped bits can be slid onto the blade and dropped into a pan.

Not magic, but an improvement for me that seemed worth sharing. I bought a Judge knife, about 6 inches long and cheaper than Sabatier knives - too costly for an experiment.

Picnic plates to eat from - Kirsteen
Available from eg Sainsbury's

Bendy straws for drinking lying down - Jen
I found it difficult trying to drink while lying down, so I bought some bendy straws! I don't spill it all over myself any longer. (don't laugh, it was 10 months before I thought of this!)

Flask of drinks - Julie
To save getting up and down, make a flask for by your bed, sofa.

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Household Items/tips

Save energy answering the door - Von and Julie
You can get a keysafe to contain the key so selected friends/carers who know the combination can let themselves in - social services can supply them. Or look into a door entry system with intercom.

Save energy ironing
Don't stand up - just lie ironing board on the floor and kneel down to iron.
Even better is to make sure any new clothes you get don't need it!!

Perch stool - Von
You can also get a 'perch stool' via your social services. This is an adjustable sloping stool that lets you take the weight off your feet.

Kitchen Stool - Sam
An excellent stool for use in the kitchen is 'Dennis' from IKEA, cost approx £24. It is high enough to reach worktops, folds flat and looks fantastic.

Cleaning the house - Jo
Find reliable help to clean your home at Selclene.co.uk

Adjustable table - Von
a height adjustable 'bedside table' with the support on one side, not on legs, so the base will slide under the bed or sofa means you can pull it right up close. You don't need to lean forward, but can rest your back while you chop etc. Social Services provided mine after the Occupational Therapist recommended it.

Changing duvet covers
Clothes Pegs on top duvet cover corners when putting new cover on - Lis
If you live on your own but have always slept in a double bed, move into your spare room, if it has a single - it's far easier to change the bed linen! - Jen

Plastic Bidet - Von
If you cannot have a bath as often as you want then a plastic bidet is helpful and you can get one from Social Services

Dry or NoRinse Shampoo and other waterless bathing accessories - Julie
If washing hair or bathing is a problem, you can use dry spray shampoo eg Batiste available from pharmacy or Norinse shampoo, shampoo cap and other bathing accessories - see the Pharmacy section of the shopping page for suppliers

Lidded raffia baskets - Von
to keep books/tapes in and the lids upside down on top of them form trays for odds and ends beside my bed

Magazine files - Von
to hold my mail order catalogues in categories (eg clothes, gifts, charity, garden etc) to save having a huge heap!

Ringbinder for organising bills, receipts - Von
I have a ringbinder with dividers and transparent plastic folders inside to keep bills, receipts etc in and I have found it really useful as I keep it by my bed and as things come in I can file them

Pen and paper or post-its - Alice
for writing lists of things to do/remember

Magnifying pill cutter
If you need to cut up pills accurately, this may come in handy.

Table Top Dishwasher - Lisa
takes 8 settings and as I'm alone this is quite alot - I found it really hard to wash-up as it hurt me & I was running out of dishes with breakages LOL. Also much easier if anyone visits me & eats.

Smoke Alarm without batteries
If you can't cope with the DIY involved in fitting regular smoke alarms, or having the climb ladders to replace batteries, try Fire Angels. They just attach to the normal pendant light fitting and work off the electricity to your lights, needing no maintenance but the light does need to be on enough to keep it charged.

Remote Control - Convert lights and appliances - Lynne
Convert both standard ceiling lights and lamps to remote control dimmer operation with the Lighting Duo Pack. Simply remove existing light bulbs and insert the bayonet adaptors, then reinsert the bulbs (max 60W).

The lights can then be controlled independently using the 2 buttons on your hand-held remote control, from up to 80 feet away. You can gradually vary the voltage to achieve the required brightness and the adaptor will then automatically store settings for you.

For mains operated appliances up to 13 amps, the Remote control Plug In Adaptor simply plugs into any 3 pin socket. Use its hand-held remote to control a fan from your armchair, to switch on the kettle from the bedroom or lounge, to turn on your electric blanket from downstairs, or to control TVs, radios and more.
from EXPERTVERDICT


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Mobility/Energy Saving Equipment

Disability Living Foundation
factsheets on all sorts of aids
Justmobility - wheelchairs etc and miscellaneous aids with links to useful sites
Good Accessibility Guide
Directory of Services for disabled
Wheelchair Travel - adapted vehicles on self-drive rental
Try the Red Cross or St John's Ambulance for help with transport or escort (at a charge)

Shopmobility - lends manual wheelchairs, powered wheelchairs and powered scooters for shopping - a great help if you don't have your own wheelchair

Wheeled walker - Serena
with seat eg from Uniscan Walkers
quite apart from its benefits as a walker, it enables you to sit down in queues sit down in queues


Key to public toilets for when locked - Karen and David
The national key scheme provides keys for people with disablities to these public toilets and can be obtained by sending a cheque or postal order for £3.50* made payable to RADAR to
The Royal Association for Disability and Rehabilitation, 12 City Forum, 250 City Road, London EC1V 8AF
or from the Radar Shop

You really need to supply a declaration of disability to get the key VAT free - see www.radar.org.uk , go to Bookshop, then "National Key Scheme" and the details are on page 1. It's nothing that onerous - just something that gives your name and address with the very simple declaration they suggest.
* It is worth checking with your local council as some councils will give them out free to disabled people.

Scooter - Jo, Trev
Rent or buy an electric scooter - see the Medical/Aids section of the shopping page for suppliers. You can get one that folds in just a few seconds and fits into the boot of a small hatchback car

N.B. The size permitted on Arriva buses is 1200mm x 700mm, but it is safer to get letter from Arriva customer services which says that scooters are now allowed to travel on the bus to show the driver just in case!

Folding seats/sticks - Jo, Hels
I've found a very sturdy but lightweight folding seat/stick. The Linden Leisure Maxi-seat opens out into a proper round seat with 3 pronged feet. Expensive but well worth the expense. I take it out with me to sit on when in queues, or use it in the bathroom so that I can sit whilst washing and cleaning my teeth. Email sales@lindenleisure.co.uk for local stockists.
or a walking stick that folds into a seat from www.flipstick.co.uk - it cost less than twenty pounds including postage

Portable Sunlounger - Von
As I cannot sit up in a wheelchair for longer than 2 minutes and a reclining wheelchair needs two people to lift into a car, if I go out I take a portable sunlounger to lie on at my destination.

Use friend with digital camera/phone to take pics of things you can't get to see - Lucy

Electric reclining chairs and bed - Jo
After 6 years of being bedbound I found a fantastic electric chair/bed which enables me to sit/lie in my lounge. It looks like a regular recliner chair, but the arms drop down, it goes totally flat and also contains a 'topper pad' which is like a duvet which you lie on, making it really comfortable. Very expensive but your local social services dept or health authority may be able to assist you with the purchase. Contact Theraposture on 0800 834654 for a free, no obligation home demonstration or further information.

Comfortable mattress
can help prevent pressure sores from Repose Direct

Water the patio plants without standing up - Von
I have attached a 6 foot baton to the hosepipe with masking tape and so can lie on my sunbed and still reach the tubs - like a fishing rod.
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Stairs - tips on coping

Stair Climber - Vicky P
Stair Climber Lifts and places the weight on each stair

Having two of necessities - one upstairs and one down - Lis
If you have to use a stick - have 2 - keep 1 upstairs & the other down. (just don't do what I sometimes do & go down leaving 2 upstairs - SILLY ME!!)
Ditto above if you need glasses for your pc & its upstairs - leave a pair by it and another downstairs for reading or whatever

Pillowcases - Keryn
are great for getting things down the stairs without having to carry them down..erm no breakables though :0)

Plastic baskets preferably with handles - Lucy
keep one at the top of the stairs and the other at the bottom for things to go up/down

Stairlifts - Julie, Von, Serena
They are quite slow but you don't have to sit bolt upright - you can lean forward in 'Thinker' pose, or sit slightly sideways with feet up on seat - I hold one foot up as can't fit both feet on seat!
See the Social Services Occupational Therapist to get help with funding if you are eligible.
Care and Repair can help get quotes from local suppliers and make sure you don't get over charged etc. They give companies a set time to get their quotes in and if they don't they lose the work.

Make sure they have taken everything into consideration - eg do you need handrail moved to other side or radiator or other fixture at the bottom of the stairs moved, or platorm built if there is an extra step at the top - and make sure it is included in the price.

N.B If you plan new staircarpet it is better fitted before stairlift as rail is attached to stairs. If you have some fitted later make sure the distance of the fittings frm the wall is measured accurately in case the chair is put back too close to the wall and marks it.

You can also have a button or remote control at both top and bottom of stairs to call the chair up or down. The stair lift is useful for other things sometimes the Hoover is put on the foot plate so its easy for people to clean the stairs or take things up and down

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Travel by car - Hazel, Jan, Jane, Jenny, Kath, Lajla, Orla, and Von

  • work up the length of the journeys gradually - it uses energy as your muscles are constantly compensating for the motion.

  • lie on mattress in rear of estate car or
  • on back seat of saloon car with feet up leaning against door (and doors locked!) with pillows/sleeping bag/bean bag for padding (or curled up on your side) - a larger car is more comfortable and individual seats with protruding seat belts are most uncomfortable!

    NB You can't wear a seat belt lying down but you can get a doctor's certificate from your GP to exempt you from the legal requirement to wear one in a vehicle where a seat belt is fitted.

  • a duvet underneath can cushion the vibrations.

  • recline in front seat as far back as possible with feet raised by eg cushions, light weight yoga blocks etc. With a Toyota Corolla it is very easy to recline the front seat and adjust it back again as there is a lever to pull.

  • using a back support might be a help

  • get your driver to drive smoothly and not too fast (as the sensory input is worse when fast), and go slowly and smoothly round bends and roundabouts

  • plan a route to avoid twisty roads and lots of stopping and starting at junctions. Cars vibrate more at certain speeds and you need to find out at which speed the vibration is worst in your car.

  • frequent stops may help tho for some that could prolong the journey too much

  • use an air filter in the car, to prevent breathing in too many fumes. You can get one from the Healthy House (www.healthy-house.co.uk) which plugs into the cigarette lighter socket.

  • no music or radio

  • Earplugs- to soften the sounds and the constant 'humming' of the car

  • sunglasses with anti glare - can help even on a dull day

  • lots of water and snacks at hand.

  • a car with air conditioning can be better than having the window open

  • have a meal - not too large - before travelling to help settle the stomach and avoid a low blood sugar episode

  • have peppermint sweets to hand for when bloating or painful wind might build up.


Avoiding Travel Sickness

Travel sickness tablets - issues to consider before taking them:
  • Some of them are contra-indicated with anti-depressants
  • They make you very drowsy, which is fine if you can/want to sleep.
  • If the person is very sensitive to medication these taking tablets is probably not a good option so best try other things

Other things that might help.

  • wristbands that you can get at the chemists for preventing travel sickness - not as good as the tablets but help a bit.

  • take breaks about every 45 minutes

  • the front seat is supposed to be better to sit in than the back.

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    Travel by Air - thanks to Dr Charles Shepherd's 'Living with ME', AfME's InterAction 49, August 2004, Rosemary from MEchat, Karen, Nadia from Imega

    • Remember airports are exhausting even to fit people, with long walks, crowds and delays

    Before you book

    • contact the flight operator and find out their arrangements for disabled passengers well in advance, eg Ryanair needs 48 hours notice so best to check ASAP, and check if there is a charge for what you need.
    • Explain your needs (eg wheelchair assistance, electric buggy, seating with leg room and room to lean back, special diet etc) and that you need the same for the return flight .
    • ask if you need proof of disability eg blue badge or any disabled ID - often no need to mention ME, as 'disabled' will do.
      NB. one member without a form who stressed to airport staff how ill she was, worried staff so much they insisted on contacting her GP before they let her fly!
    • Ask the airline as you may get free upgrade by faxing a doctor's note or other disablility proof in advance
    • if very cheap flight you could book 3 seats
    • Ask if you can check in late to minimise delay
    Before you go
    • Get doctors letter or if more severe, incapacitated passenger's handling (INCAD) form stating your disability and confirming you are fit to travel, and remember your blue badge
    • arrange to stay overnight to break journey if possible for you and partner/family’s sake
    • get to airport via car if you can - don't exhaust yourself first on trains and buses etc
    • Stock up on medication, ear plugs, eye mask, folding walking stick, replacement parts for any equipment, healthy snacks for journey, sweets to suck while landing, etc.
    • Pack well in advance and rest up for a couple of days beforehand
    • wear baggy comfortable clothing in layers easy to take off /put on
    • pack what you need for flight in a small holdall or knapsack

    Long Haul
    • a supplement called melatonin can help jet lag
    • consult your doctor about injections, herbal supplements etc
    • sleeping tablet may help you sleep
    For Noise and Ear/Balance problems
    • airport chemists carry strange little earplugs which 'balance' out the air pressure and handily reduce noise as well.
    Getting round Airport
    • even if you don't have a wheelchair, inform Airport in plenty of time and ask to borrow one - you may need a doctors letter or INCAD form stating your disability and confirming you are fit to travel.
      NB. occasionally airport can let you down and not have wheelchair available straight away.
    • be assertive and ask for help - never carry your own suitcases etc
    • carry a folding walking stick as it says 'I have a mobility problem' in any language in case wheelchair unavailable so you can queue jump if needs be!
    • Once in the check-in queue, show the steward your Blue Badge and if you're lucky you'll get escorted to the front of the queue - same at the security queue.
    Choosing a seat
    • Flying upgrades: it's worth requesting a free upgrade or extra legroom (bulkhead seats) due to your disability when flying long distance. Call the airline directly, although some are more helpful than others
    • window seat means people won’t need to step over you
    • if you prefer seat in front with legroom – remember it can be used as corridor
    • try to choose a seat that you can recline without annoying the people behind.
    During the flight
    • If you have them would recommend sleeping pills.
    • walk around the cabin from time to time as this eases the leg muscles and reduced the risk of DVT. While sitting in your seat tense and release the leg muscles every so often as well.
    • Drink plenty of water to avoid dehydration.
    • Avoid alcohol as this will encourage dehydration
    • suck sweets to avoid pain frm air pressure on landing

    Further Information on Travel with disability
    See Flying with disability

    AA's Guide for the disabled Traveller includes advice about car, ferry and plane too.

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    Preparing for and coping with powercuts/snow - Von, David, Bernard, Booly and Kirsteen

    N.B.1. Keep things to use in a power cut somewhere where you can find them in the dark!

    N.B.2. As soon as power goes off dress up warm - don't wait till you start to feel cold as hypothermia creeps up gradually and it is hard to warm up again.

  • Register with electricity/gas company as a priority user and you get through quickly to a human not an answer phone.
    Some issue a pack to vulnerable users to use in emergency with blanket, gloves, re-usable handwarmer and torch with battery.

  • Keep candles and matches handy - nightlights in small jar are safer than long candles that might tip over. Jam jars are useful to hold candles if you are short of candlesticks tho you need to melt bottom of candle to fix it.

  • A wind up or squeezy dynamo torch is handy as does not need batteries.
    A head torch keeps hands free. Keep spare batteries handy!

  • An accessible corded phone as it will work in a power cut while a cordless one needs power and a mobile needs recharging.

  • Keep handy a list of phone nos of emergency and friends who can help as no good if they are only in the memory of a cordless or powerless mobile phone!

  • A wind up mobile phone charger available from Amazon to charge phone and even touchpad and kindle
  • camp stove (and spare gas cylinder) to make hot meals/ drinks.

  • battery operated, carbon monoxide alarm and make sure it is working as camp stoves etc can cause problems with limited ventialtion!

  • keep dressing gown, warm socks and other extra clothes downstairs just in case.
    A slanket or snug rug is much recommended.
    I have an old down sleeping bag in a pillow case on my bed downstairs so always acccessible.

  • My carer daily fills two 1 litre flasks with hot water in the morning as well as making drinks etc to reheat as my doc recommends drinking 2 litres water on top of normal drinks - specially handy in a power cut

  • Always keep spares in case cut off by snow as well. I do this all year on a separate shelf and replace as used.

    - regular kitchen supplies like tea, sugar, coffee.

    - breadsticks keep for several months in case bread is in freezer during cut.

    - tinned foods and a tin opener. Tinned beans and tinned fruit are handy and easy to eat.
    - longlife milk or soya milk and longlife fruit juice
    NB. always check use by date
    before winter to make sure they are in date if you don't often use them!!

    - spare gas canister for camp stove.

    - spare batteries for radio/cd/torch etc

    - spare candles and matches or petrol for lighter

    - easy ready meals in freezer in case snowed in with no help but power still on!

  • A bag of rock salt or similar may be worth having if you may need to clear your path (or get someone to do it for you).

  • a spare electric heater if you have gas heating and in case of gas or boiler problem

  • or a portable gas heater with own propane cylinder - but be careful of ventilation - see carbon monoxide alarm above!

  • Consider a heating breakdown contract so you get priority - parts and labour for repairs is covered and most include the (highly recommended) annual service for your boiler. May cost £14 a month.

  • Consider an uninterruptible power supply (UPS) for your computer, unless you use a laptop, where the internal battery does the same job giving you time to save your work and shut down. It's not a whole lot more expensive than a good extension lead with a surge protector.
    Another use for a UPS is one that you keep turned on permanently for devices like cordless phone base stations and your broadband router, keeping them working during short power cuts (DSL based broadband will keep working during a power cut, cable broadband often doesn't work as the cable system often lacks battery backup). You could also have a lamp with a low energy bulb connected for tasks where more light than a torch is useful.

  • Consider a portable generator - you can get some nice ones with (battery operated!) electric starters now for under £1000 which run for over 12 hours. They are very heavy and noisy so if you get someone to place it appropriately in an outhouse, all you have to do is press a button to start it and run an extension lead to wherever you need electric power, and you have electricity for as long as you need it, providing you have a fuel supply.
    Anything over 2000w (and ones with starters are usually more) should be enough to run at least one convection heater or boil a kettle.
    Click here for more information on how to instal a power transfer switch safely.

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    Emergency

    Emergency Bag - Kirsteen
    I keep a bag near my door filled with emergency supplies, fruit bars, chocolate, small bottle of water, first aid kit, change of clothes, money, ID, phone numbers etc - not just for winter, but if I ever had to get out in a hurry because of a fire or anything,

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    Coping with Christmas - Von, Katya, Kitty, Serena, Bernard and Janet

  • Start early - see shopping page . Remember mail order can take a month to arrive and if unsuitable you are back to square one!
    N.B. filing mail order catalogues in categories in magazine files as they arrive is easier than having one huge muddled pile!

  • Online list - start a list during the year adding ideas for Christmas presents as they come to you and also keep a record of what you get for people so you don't send the identical thing next year due to brain fog. Include ideas for yourself as it is often hard to think on the spot if asked! A gift suggestion is a donation to ME biomedical research eg ME Research UK

  • order Christmas cards (and gift wrap) first so you can start early and pace yourself (ones for abroad first!) - or you can send e-cards and save postage
    NB Don't forget you can get ME Research UK
    (formerly MERGE) Christmas cards - the biomedical research ME charity.

  • Prioritise make a list of presents and cards and decide what you can manage in case you cannot manage a gift/card for everyone you would like to

  • if you have a database like Works, as well as addresses you can have marker fields for those to whom you send cards, newsletters, and gifts so that you can print a list and cross off what you have done.

  • write and print off a newsletter to save re-writing news

  • print address labels for the cards - you can also print your greetings on labels to save energy. <

  • Put a return address on envelope so PO will return it if undelivered. Also so recipient can be sure who it is from if two friends have the same name or writing not clear. N.B. Make sure return address is small so the machine does not read it as the TO address. Your name, house number/name and postcode are enough.

  • Pre-printed address labels with your own address from eg Able labels to stick on Christmas card envelopes

  • wrap (and label!) parcels as they arrive to avoid last minute rush. You (or someone else!) could make re-usable cloth bags for family gifts, or use pretty paper bags

  • order online and get them sent straight to recipient eg wine, or get companies to wrap for you - cost varies but can be cheaper than postage

  • order online and get them sent to recipient's family and send paper and card separately so they can wrap up for you

  • be environmentally friendly and leave in original bag :-) - you could stick a bow on it!

  • put parcels in different boxes/bags for different destinations eg different members of the family, to avoid a tiring last minute sort out

  • you can agree not to send presents and cards at all, or to send a donation to charity instead

  • you can agree to 'swap' presents eg each put what you would have spent on the other's gift to (or towards) something you would like and - most important - tell each other what you are spending it on so that it becomes their gift to you and vice versa and so you will each think of the other when you see/use it!

  • don't be too pressurised by time - anyone over 12 doesn't usually mind if warned that a gift is going to be late!

  • make sure as much of the food as possible is prepared well in advance to save last minute rush

  • beware of standing too long eg when decorating Christmas tree or hanging cards

  • try to space out visitors or other activities so you have time to rest in between

  • warn people of your limits well in advance so they know if you will need to rest, leave early etc

  • don't defend yourself if anyone complains if you do go and rest or leave early - waste of energy and anyway they were warned!

  • have Christmas dinner on Christmas eve if you have kids, so more energy can be spent with them on Christmas day

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    Miscellaneous

    Address Labels - Jen
    I do lots of prize crosswords etc, I have printed out sheets of labels with my name and address on, I also print out sheets bearing the competition addresses of the ones I do regularly. You don't really need labels, you can use paper and stick them on with glue stick
    You can also get them printed for a reasonable price from Able labels

    Library fines - Anwar
    My local library doesn't fine for overdue books if you're registered disabled with them, and they only charge half the normal fee for reserving books. They don't advertise this, and I'd been paying hefty fines on the fifteen plus books which I wasn't able to take back on time or had forgotten to renew by phone due to bad memory. But also ask about Housebound Library service - see Hints for the Housebound

    Free loft insulation and draught proofing - Hels
    This is available for your home if you are disabled or on a low income. Tel (0800) 952 1555 for more information

    REMAP volunteer engineers, craftsmen and occupational therapists
    may be able to help solve some of the practical problems of living with ME. They design and construct otherwise unavailable equipment for people with individual needs due to disability, eg. a computer keyboard support to be used lying down.

    There is no charge to the person supplied with equipment though donations towards materials are welcomed.
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    More Tips
    Zoe Williams, a chronic sufferer of severe ME, has compiled a very useful page of tips for the severely affected - click here to visit her site.
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