ME Support (page 2 of 2)
1. Eat to beat fatigue - 2. Dealing with having ME

Thoughts and advice on dealing with having ME

These are some spiritual and practical thoughts I've had about ME. The shopping thoughts are practical, and the other one's spiritual!

You can also download each document as an RTF file that should open easily in WordPad.

Download Home Shopping suggestions (14KB)

Download article on Spiritual beliefs (7KB)

Jane's home shopping guide

Intro

Hello! I am a member of NorME, but you probably won't have met me yet, as I've only been to one meeting. Although when I keep to my limits I feel OK, the limits include shopping. The only shop I go to is my village grocery shop, where I can sit down!

For those of you who are in a similar position, or would like to save some energy shopping from home, here is what I've found to be useful. I've included catalogue shopping, crafty shopping (from those shops that don't usually do a home service, etc - 'ways and means') and for those of you with a computer, some Internet shopping. It's a very personal selection - other people may want to contribute their finds, too.

Food

I am lucky to live in a village with a shop, that does deliveries. I don't know what I would have done otherwise. It's worth investigating what mobile shops stop in your area - you'd be surprised! We have two fish men and two veg women who call to different customers in our village, not to mention a mobile library and mobile video rental! Support the small retailer that's what I say.

Organic and wholefood

Daily Bread do all sorts of wholefood groceries, specifying what is dairy free, what gluten-free and what is organically produced. They also do soap, shampoo and washing powder. They will post you a catalogue or you can print one off the Internet. Delivery is free if you order over £50 of items and their prices are competitive (Waitrose gluten-free bread = £3.50 for 800g; Daily Bread version £1.27 for 400g)
Daily Bread - 01604 621531
The Old Laundry, Bedford Rd, Northampton NN4 7AD
website: www.dailybread.freeserve.co.uk/home.htm

I also order vegetables from Organic Trail who are based in Stony Stratford. They deliver free and a box costs £12.50. If you're not on their route you may have to find someone else locally who will also take a box. I understand Leaf Cycles in Northampton do boxes too.

Organic Trail - 01908 568952,10 St Paul's Court Stony Stratford, Milton Keynes MK11 1LJ
Leaf Cycles Organics - 01604 628956, 24 St Michaels Avenue, Northampton

Other food

Tesco, ASDA and Iceland all do home deliveries. (With Tesco, this depends at the moment on whether you are near a Tesco store, but this service is expanding rapidly. Call your local store or consult www.tesco.co.uk for details.) There is a charge for this service - usually £4-5. For Tesco's, you order via the Internet or can get a CD from them so you can browse offline before sending in your order. They now do Towcester - hurrah!
Iceland send out a catalogue, which you can post in to them. They do all sorts of groceries, as well as frozen food.

Tesco - www.tesco.co.uk
Iceland - sorry have lost details - phone your local shop

Clothes

This is a matter of taste as well as money. The options I've found so far are pretty expensive. I can't lift the big catalogues, which are probably cheaper, like Freemans or La Redoute. And of course there's always Next, where you have to pay for the catalogue..

I use Boden, who do lots of ësmart casual' clothes as well as some office-like ones and also party ones. They have adult men's and women's clothes in one catalogue, and 'Mini-boden' for children's in another. They have sales and special offers from time to time, and also a web site which is currently offering 10% off. NB: if you hang on for the seasonal sales, bear in mind that they run out of lots of items later on in the season.
Boden 0181 453 1535. Mon-Sat, 8am - 8pm
Midland Terrace, Victoria Rd, London NW10 6DB
www.boden.co.uk

Racing Green are slightly cheaper and have nice jumpers and casual, sporty and office wear - for men and women.
Racing Green - 0990 78 88 98, PO Box 26, Ambleside, Cumbria LA22 0GG
www.racinggreen.co.uk

Hawkshead do outdoorsy casual clothes, cheaper than Boden. Haven't tried them, they look good.
Hawkshead - www.hawkshead.com or 0990 993344

Recently I've been mailed by Orvis, a US company who started out in the fishing rod trade... their clothes are a mixture of outdoorsy and old-fashioned indoors, plus furry slippers and silk longjohns for those of us eczma victims who feel the cold.
Orvis - 01264 349500

More warm undies from Bella di Notte who do some rather stylish ones. Wish I'd seen them earlier..
Bella di Notte 01423 872967

And now for the good news.... Marks and Spencer by mail!
Marks and Spencer 0845 6031603 8am - 11pm 7 days a week.

Debenhams have a similar Christmas selection of clothes and gifts.
Debenhams - 0800 0288266
Index catalogue - very good value and also brands, clothes/homeware etc - 0345 552211

Wacky idea from the internet - Orkney Angora who are a family in the Orkneys who knit jumpers, socks etc - very warm!
Orkney Angora - 01857 600421, Orkney Angora, Isle of Sanday, Orkney KW17 2AZ
or www.users.zetnet.co.uk/angora/

Body care

I did a deal with my local Bodyshop in Milton Keynes, so that I can buy by post from them. From their website it looks like they are in the process of developing mail and website ordering, but for now, either look up products on the website (full descriptions given) or try asking someone in the shop for something suitable. I found them very helpful and they didn't charge a lot of postage either. NB: Once you've ordered you can join their loyalty scheme, giving you £2.50 off for every £50 you spend.
Bodyshop - 01908 663738, 24 Midsummer Arcade, Milton Keynes MK9 3BB or 01604 34762.
For luxury presents I have been looking at L'Occitane catalogue - they do perfume, bath things, aftershave & soap made with plants grown in Provence. Not cheap but looks nice.
L'Occitane - 020 7290 1421

Penhaligon's have classic English colognes and scents, for men and for women. £5 gets you a sample box so you can choose what to buy more of.
Penhaligon - 0800 716108

A cheaper source of ideas - Crabtree and Evelyn do a mail order catalogue with bath goods, skincare etc.
Crabtree and Evelyn - 020 76031611, or 55-7 South Edwardes Square, London W8 6HP

Baby things

I ordered a Mothercare catalogue to get a toy for someone's baby, then rang one of the shops to get it sent out to me.
Mothercare - phone local store

House

John Lewis will take phone orders if you know what you want. They can send an order form out to you for you to sign, then they will order the goods and deliver free.
Habitat charge £6 for the privilege of receiving their catalogue, including postage. I was not impressed!! They then charge £20 to deliver unless you buy over £750 of goods. Who do they think they are?? You could always pick things out of the IKEA catalogue then bribe someone to pick them up. IKEA also deliver for a fee, but you have to go to the store to pay them, first.
Argos things can be collected or delivered for £3.95, or free if you buy over £150 of goods. Loads of electrical and household goods.
Creative Kitchenware has a cheapish cook- and table-ware catalogue and Divertimenti is the luxury version with Delia-recommended saucepans.
John Lewis Milton Keynes - 01908 679171
Habitat - 01865 790313 (Oxford store - ring for catalogue)
IKEA - Brent - 020 8208 5600
Argos - 0870 6002020
Creative Kitchenware - 01302 752733
Divertimenti - 0181 246 4300

Christmas

I ended up getting crackers and cards and some presents even from the Oxfam catalogue - they do quite a range of things like sofa 'throws', vases, jewellery, china, toys and games, as well as Christmas decorations. Good value.
UNICEF do very good cards, Action for ME have a selection and ActionAid - a 3rd world charity like Oxfam, have cards and gifts.
Oxfam - 01392 429428
UNICEF - 01245 476315
Action for ME - 01749 670799
ActionAid - 01460 238000

See also clothes section - Marks and Spencer and Debenhams.

I have just got a book called Mail Order Made Easy which was originally Christmas Made Easy - how to buy all your presents etc by post. It's by Leslie Geddes-Brown and is published by Columbine Press. It has lots of ideas, including food to order by mail.

Art

So far I have used The Wheatsheaf Art Shop who do a huge catalogue of artist's supplies. Prices are not particularly cheaper than shop prices, but there is a discount if you get a special order form for clubs and societies (up to 25%, which is for over £200-worth of goods).
The Wheatsheaf Art Shop - 0171 935 5510. 9-5.30 Mon-Fri; 10.30 -5 Sats.

Books

Where do you start?! There are so many book clubs offering discounted books, including TSP where you don't have to commit yourself to buying more books, and Cygnus, a friendly club stocking 'New Age' books, where again there is no obligation to buy.
NB: TSP will send you a monthly selection, though, if you don't send a form back in time.
Alternatives - 'second hand books by or about women' sounds interesting.
The BBC now does books by post. You have to order by Dec 10th for Christmas.
THE bookshop I have found is through the Net - Amazon.com. Their service is excellent and they've never failed to find any of the books I've asked for.

TSP - The Softback Preview - currently advertises in all the papers.
Cygnus - 01550 777701 or www.cygnus-books.co.uk
Amazon.com are at amazon.co.uk on the Web, for UK-based service and prices.
Alternatives - 01209 716557, 49 Vyvyan St Camborne, Cornwall TR14 8AS.
BBC books and videos - 0870 6007080, 8.30-6 weekdays or www.bbcshop.com

Office supplies

I have 2 catalogues: Office Star and Staples. They seem pretty similar to me.
Office Star - 0800 980 9094 or 01635 299094
Staples - 0800 141414 (NB this may be an order line) also www.staples.com.

Music and videos

Try HMV.co.uk. Their service was terrible early in '99 but they assure me this has all changed with a new computer programme!
Amazon.co.uk/music/ is worth a try - Amazon are now selling CDs.
http://catalogue.barclaycard.co.uk/cgi-bin/nme.storefront is the site of the NME CD store, accessible from barclaysquare.co.uk which also has lots of high street shops. NME don't charge postage.

Gardening

Seeds
- Chiltern Seeds, 01229 581137
- Thompson and Morgan 01473 688821

Plants
- Bernwode Plants - 01844 237415 - good quality plants and apple trees
- Scotts Nurseries - 01460 72306 - fruit, roses and plants
- David Austin Roses - 01902 376376

Bulbs

- Orchard Nurseries - 01354 638613

That's it for now.... A final idea - the Virgin book of home shopping - borrowable for 2 weeks only from Action for ME. I'm still waiting for it so I don't know what it's like.

Action for ME library - for AfME members - 01749 670799. Send £15 to join, 50p - £1 for each book/cassette.

Happy shopping!

Jane Harries

Article re spiritual beliefs by Jane Harries

ME is a big opportunity for reflection. I've had it for 12 years, however in the last year I've had to give up work and am mainly housebound. I believe I am getting better, but recovery is very slow and erratic.

The experience of ME has prompted me to ask questions. My spiritual researches have led me to either answer the questions for myself, or live with the questions better. The questions I had were:

Why am I ill? Is it something I've done that has helped trigger this off? If so, how can I heal and...

What can I learn from this experience?

When will it end? Will I ever get better and if not, how am I going to live a satisfied life?

How can I cope with pain and inactivity?

What am I worth now that I don't work?

What are my relationships with other people based on? I want some appreciation of my situation, but I don't want pity.

Here are my reflections on the questions above:

a) Why me?

This is a huge and sensitive subject. There is a spectrum of belief existing today, between the Western medicine view of 'it just happened', right up to 'this is your fate to endure' or 'your fault'. I do think many illnesses don't just 'happen', however it's pointless and harmful to consider oneself as 'guilty' for being ill. The meaning of illness is something different for everyone, and also different from a medical 'cause'. My illness is a crisis that I can choose to respond to positively or negatively. I'm not easily positive about feeling grotty! Exploring what it means to me in a spiritual context helps me look at it more positively.

The 'reason' for my being ill, I think, is that after a long period of stress at work, I was contemplating leaving work but put it off for financial reasons. I hadn't even enjoyed my job, on the whole. My body had had enough! I'm not saying that ME is always to do with stress, by the way, just that this was the case with me.

Stress becomes destructive if you get angry and bottle that up. Since I've been ill, I've read a lot about the power of forgiveness and I've realised that holding on to anger is bad for me physically. To move on, I need to let go of that anger, of the need to see that 'justice is done'. When I'm angry, I would like God to come down and say, 'JANE, YOU WERE RIGHT AND THEY MUST BE PUNISHED!' I can still keep my views on what's right and what's wrong, however I don't have to worry about it. God's justice is what matters, and s/he knows better than me who 'deserves' what consequences.

I've had to adopt a vastly different lifestyle. The ME doesn't allow me to pursue anything very intellectual, so I've been painting. It's as if I've got to spend a while doing 'right-brain' activities rather than 'left'? You could express this situation as 'God wants me' to balance my life, or that 'my heart wants this'. What is important is that

a) the experience means something to me I can act on and
b) something bigger than my rational mind is telling me something, to which I must listen.

b) Will it ever end, and what if it doesn't? How can I handle inactivity and pain and what am I worth, while I'm ill?

'Your worth is not established by what you do or think or make, ..or by teaching or learning. It is established by God.' Course in Miracles

I have always rated my development by what I achieve - or even, though I would rather not admit it, by what I possess, including relationships. Finding this phrase in the Course in Miracles, along with other teachings on 'self-worth', gave me hope. I could forgive myself for being inactive, not earning money and being alone, and stop trying to be 'normal'. And I could 'be nice' to myself rather than constantly pushing myself to achieve. This also helps me to stop relying on physical progress for my measure of personal success, with resulting yo-yoing moods.

For me, ME prohibits achievement orientation and is a chance to 'be', in the here and now. Actually, when I am still, and focus on different parts of my body, a lot of the parts feel fine. Right now, I can be OK. It's the prospect of 'right now' extending into the future that I am scared of. As long as I focus on the present, I'm all right.

c) How can I be alone all the time, and what have I got to bring to friends and family?

This is a big issue for me, as I spend a lot of time on my own: I get ill when I socialise with more than one person. Spiritual beliefs, meditation and prayer help me feel close to others even when I am alone. As a result, I have realised that I am stronger than I thought I was, and can motivate myself. The source of my motivation and strength is God/the 'life force' acting through me, rather than my personality.

Remembering that other people have problems too does help. I can listen and support my friends; that just because I haven't earned money today doesn't mean I have nothing to offer them. And I am finding that they will give me fantastic support when I ask for it. It's a matter of give and take.

As well as asking for support when I'm despondent, I work at appreciating what I do have. If I didn't do this, I would disappear down a black hole! Appreciation - gratitude - to whatever God you subscribe to, for the sun, birds, view of the sky, whatever - I find really helps. Even when I'm feeling cynical or upset, I eventually give in and laugh about something. That's the final benefit of 'spirituality' - an appreciation of life, which helps you see things in perspective, and laugh.