Hi Everyone,
I hope you're all as well as can be expected and that you enjoyed all the sunshine we had in April. I love the spring (apart from the hay fever that is!) and the autumn, when it's neither too hot nor too cold and I can get out in my garden regularly and have some days out too. For my birthday a couple of weeks ago, I went to visit a garden near Colchester - a long way for a day trip, but I'd wanted to visit it for ages and it was worth the exhaustion the next day! As there's an ME connection, I've written a paragraph about it, which you'll find later in the newsletter.
This newsletter also contains the first articles in three different series - Thora's compilation of members tips and strategies for coping with ME; one I'm writing about living without chemicals; and one on hobbies which are restful enough to be suitable for people with ME. I hope you find them useful.
We've three more meetings coming up before the next newsletter comes out, so do make sure you put the dates in your diaries or calendars now, along with the times and venues, as they're not all the same as usual. For the first of these in May, a doctor from the Breakspear Medical Group will be coming to talk about their approach to treating ME, which should be really interesting. Do come if you can!
Gillian
Meetings
Please note different times and venues for the next three meetings!
May 19th, 7-8.15pm
Hilltop Carers' Centre, Primrose Street, Cambridge (parking in Green Street)
Dr Daniel Goyal from the Breakspear Medical Group, a private clinic specialising in environmental medicine, will be talking about their approach to treating ME. For more information, have a look at their website: www.breakspearmedical.com
June 16th, 7-8.30pm
The Plough, Fen Ditton
Social meeting - do drop in for a chat, even if you can't make it for the whole evening.
July 21st, 2-3.30pm
The Sunflower Room, Scotsdales, Great Shelford
We hope to have a talk on reflexology - for more details, please contact a committee member nearer the time.
All meetings at Hilltop Carers' Centre, Primrose Street, Cambridge (parking in Green Street), unless otherwise stated.
Everyone welcome – families, children, friends & carers.
The library, including Group and clinic information leaflets, will be at meetings.
A lot of our members have Multiple Chemical Sensitivities so please try to avoid wearing hair spray, body spray, perfume, or any strong smelling scents at meetings. For more information about MCS visit www.chemicalfree.co.uk |
Last Meeting Rosemary Humby
Having tried very hard, but without success, to persuade some city pharmacies to let us borrow a pharmacist for the March meeting, I was very grateful to Sean Gage, the pharmacist at the chemist in Great Shelford, for coming to my rescue! Below are some of the comments he made to us.
* Apparently ME tends to 'slip under the radar' for pharmacists, since they won't necessarily know what the patient is suffering from when dispensing for them. It's therefore helpful if patients tell their pharmacist that they have ME, as this is useful background information.
* Someone asked about Melatonin, which is sometimes considered helpful for people who have sleep disorder as part of their ME. Sean explained that Melatonin was unlicensed until about 18 months ago, but is now available on prescription as a licensed product.
* ME patients might consider using the pre-payment prescription scheme if they have a lot of prescriptions – this costs £28.25 for three months and £104 for a year (see www.nhsbsa.nhs.uk/1127.aspx or tel. 0845 850 0030 for more details).
* Sean spoke about the current move towards electronic (ie rather than paper) prescriptions.
* Someone asked about remedies for stress and anxiety. Sean mentioned St John's Wort and Bach Flower Remedies, but pointed out that there are not many remedies available over the counter. He pointed out that herbal remedies are not necessarily safe just because they are 'natural'.
* We discussed ways in which problems with medicines are reported back to the relevant regulatory authority, including the 'yellow card scheme'. This applies to herbal medicines too. We also discussed the way in which prescribing is becoming personalised, ie 'tailored prescriptions'.
* Finally, Sean recommended Boots' new website WebMD, which gives lots of useful information about health issues. It can be found on www.boots.webmd.com This could be interesting if you have access to the web and can cope with using the internet, or possibly a friend or relation could have a look at it for you.
Members Tips For Feeling Better Thora Blondal
At our meeting in January we talked about what we have found beneficial and what has helped us feel better. Here are some of the things our members said:
"Having practical help with chores and pretty much everything has made my life easier"
"Watching funny TV programmes"
"Learning to play guitar has given me a sense of achievement"
"Reflexology is lovely"
"Sometimes I just need to be sad and good cries clear the system"
"Using EFT for managing my pain levels"
"CBT has helped me"
"Seeing the M.E. clinic"
"Using taxis instead of spending energy driving, even though I don't consciously find it tiring"
"Subliminal Positive Thinking CDs"
If you have any other suggestions that you would like to share with the group, please email thorablondal@yahoo.co.uk
Please note that the committee cannot take any responsibility for the suggestions listed here, which are not treatments for ME as such, but simply ways of helping people to cope with the condition.
ME Hobbies - Reading
Reading as a hobby (as opposed to reading the paper, or reading school books) is obviously ideal for people who don't have much energy, and as its also cheap, its good for anyone on benefits too. If you've never thought of reading as a potential hobby before, here are a few ideas to get you started ...
If you're buying books (new or second-hand), its worth checking out several different websites if you have internet access, as the big online stores such as Amazon (www.amazon.co.uk) and Play (www.play.com) compete with each other to offer the cheapest prices. If you use the library, you may not need to pay anything at all. If you're not able to get to your nearest library, you might be able to access a mobile library - have a look here for details of where they currently stop: www.cambridgeshire.gov.uk/leisure/libraries/access/mobile/default.htm or call 01223 718356 to see whether it will be possible to arrange for one to stop nearer your home (you might need to find other people who want to access one there too). If you are housebound, the library can arrange for books to be delivered to you (you can either reserve these in advance or take pot luck), and you can borrow them for longer periods; housebound people and those with disabilities which affect their vision also pay no reservation fees for audiobooks, DVDs, CDs etc - more information here: www.cambridgeshire.gov.uk/leisure/libraries/using/charges/concessions.htm
If you have blurry vision or problems with light sensitivity which limit your ability to read, it's worth getting hold of some audiobooks, or perhaps asking a friend or family member to read to you sometimes. If your level of brain fog means that you can't take in anything very serious, why not try to find the books you enjoyed as a child and re-read those, or investigate some more recent childrens books? - from J K Rowling's Harry Potter stories to Meg Cabot's Princess Diaries, there's a wide variety of books out there which are fun and easy to read even when your brain feels empty of everything except cotton wool.
If you are well enough to go out and your brain is not too foggy, you might be able to join a local book group, a good activity for people with ME, as it's quiet and involves very little energy - your local library should be able to advise you about one near you, or you could try looking here: www.bookgroup.info/041205/directory.php There are also online book groups, so it's possible to join one even if you can't get out.
If you don't think book groups are for you, but you are having difficulty finding books which suit you, or you just want to try something different and don't know where to start, it might be worth investing in a book about other books, such as the Bloomsbury Good Reading Guide, which costs around £7 on Amazon (less for a second-hand or older edition) and should give you plenty of ideas. (I should perhaps declare an interest here: the original version was written by my late father-in-law, but I dont get any commission for recommending it!). As well as suggesting and summarising a range of interesting books, it also cross-references them so that you can find books which are similar to those you already know you like (eg if you enjoy Georgette Heyer's stories it might direct your attention to Jane Austen; if you're a fan of Ursula le Guin it might point you in the direction of Margaret Attwood).
It's also worth reading other peoples reviews on Amazon if you are trying to decide whether or not to buy a particular book - and if you've found any books you love (or loathe) perhaps you could contribute some reviews of your own.
Do you make patchwork quilts, collect stamps, paint watercolours, have a Second Life, or have any other hobby you think other people with ME would enjoy? Would you be willing to write a short article about it? This is (hopefully) the first in a series of articles on different hobbies suitable for people with ME and I'm looking for people to write some more! I'm already planning articles on digital photography, card-making, and (armchair) gardening so, though I'd be happy to hear from you if you think you might have anything to add to these, I'd particularly like you to get in touch with me if you could write something about any other hobbies. Please email gamcleish@yahoo.co.uk before you start (to make sure no-one else is already writing something on the same topic). Thank you!
ME Awareness Week
This years ME Awareness Week runs from 9th - 15th May, with International ME Awareness Day on 12th May. Various events are being organised by ME charities and by individuals, some involving more energy than others! There are details of Action for ME events and opportunities here: www.afme.org.uk/gettinginvolved.asp?id=63 - or call Nicola on 0117 9307293 for their fundraising ideas. If you don't feel up to any of these, perhaps you could use one of RachelCreatives suggestions of simple ways to raise awareness, such as writing a blog post, sending a link to a video about ME to all your friends, or just displaying a blue badge on Facebook or MySpace. You can find Rachel's blog here: http://meaware.wordpress.com/
Living Without Chemicals # 1
Many people with ME have some sensitivities to chemical products, while a few, like me, have severe MCS and find it impossible to live with chemicals at all. This article is for those struggling to find alternative cleaning and household products which don't set off allergies - but also for those who would just like to use items which are better for the environment, wildlife and everyone's health. I'll write another article for the next newsletter about chemical-free toiletries and personal products.
White vinegar is an incredibly useful substance - it can be used to clean kitchen and bathroom surfaces, bathroom suites, metal sinks, mirrors, windows, tiles, chrome and stainless steel. It can be used as a rinse aid in the dishwasher, to get rid of limescale on taps or in kettles, and to remove mould from around upvc window frames (don't try using it on painted surfaces though as it also removes paint!). Its very cheap and readily available in supermarkets - although if you haven't come across it before it can be hard to find as its labelled "distilled malt vinegar" and its clear, not white.
Bicarbonate of soda is also readily available in supermarkets and is a cheap and useful all-purpose cleaner. Although not as easy to use as the vinegar (which can just be decanted into a spray bottle), as you have to mix it with water, it is much milder and can be used to clean softer surfaces such as fridges, as well as for handwashing clothes. Soda crystals, which can be found in the laundry section of supermarkets, can be mixed with water to clean tiled floors and lino, and can also be used to keep drains clear and to clean things like flower pots and birdbaths.
Obviously there are a number of speciality chemical-free products on the market, as well as others which may be environmentally friendly but are not necessarily completely free from chemicals and other allergens. If you have MCS or other allergies, it's worth trying different ones to see which are suitable for you. Im unable to use Ecover products (which may be environmentally friendly but contain synthetic perfumes) and Earth Friendly ones (which are entirely organic but contain scented essential oils). I do, however, use Clear Spring laundry liquid (which smells quite strongly of natural rosemary) and dishwasher gel, and Bio-D toilet cleaner (which smells of vinegar and citric acid) and polish. These are available from ethical sites such as Natural Collection (0845 3677003, www.naturalcollection.com) as well as from their own sites, www.faithinnature.co.uk and www.biodegradable.biz
For big cleaning jobs though, it might be worth investing in a steam cleaner (from around £40), which will tackle everything from greasy ovens to dusty curtains - some can also be used to strip wallpaper or to clean carpets, depending on the attachments.
People with even mild MCS often react very badly to air fresheners, especially the ones which spray synthetic scents when there is any movement. If you can't make do with opening a window (and if you use these air fresheners, you should open a window too - ironically the packaging tells you to use them in a well ventilated room!), there are a number of alternatives. Some chemical deodorisers, such as neutradol (the original unscented version) work by absorbing odours rather than by masking them with perfume and may be suitable for people whose allergies are not severe. Otherwise, try a metal smellkiller, such as those made by Zielonka or Ecozone (www.ecozone.com or via Amazon) - or just put a cup of bicarbonate of soda in a room and it will absorb smells.
I can't hope to cover all available products in this article or it will get far too long, so Ill just say a final word for Ecos paints (01524 852371, www.ecospaints.com), which are organic, water-based and solvent-free - I can't go into a room for about six months after its been painted with anything else, but I can paint with Ecos products myself without even wearing a mask. I thoroughly recommend them.
Green Island Gardens
I was really inspired by my visit to Green Island Gardens, near Colchester, not just because the gardens themselves are beautiful, but also by the story of the woman who owns and designed them. Fiona Edmond, a Cambridge graduate, former golfer and professional garden designer, was a high achiever with a busy life until she developed severe ME in the mid 1990s. She was seriously ill for three years, for six months of which she was bedbound, really sensitive to light and unable to be in the same room as her two children. She and her husband needed to get out of London, so they bought a house in Essex with a 20 acre garden (wish I could afford that!), but she wasn't in a fit state even to notice the garden when they were house-hunting - she was barely in a state to notice the house. Then she started to recover from ME and found that doing a design for her own garden was a good therapy (her husband and father were doing the physical work). Now she is more or less completely recovered and manages the gardens herself, opens them to the public, has a little nursery at the side selling her plants and is working as a garden designer again - and she and her husband have had another four children! If you are well enough to travel and are ever in the Colchester area the gardens are lovely and well worth a visit. They are woodland gardens so not ideal for wheelchairs, but there is disabled parking right by the entrance and plenty of benches throughout the gardens. There is also a small tearoom. More details, including opening times, are on the website: www.greenislandgardens.co.uk or call 01206 230455.
Please Read This - Its Important!
We have only received subscriptions from HALF of our members so far this year. We really rely on your membership subscriptions to keep the support group going and send out newsletters and, while we understand that for a few people even £5 membership fee is difficult to find, we can't keep subsidising all sixty of the people who haven't paid! If you haven't paid because you can't afford to pay, please let us know - otherwise, please send a cheque to Thora as soon as you can. If you can't remember whether you've paid, please ask! Cheques for £5 should be payable to the Cambridge ME Support Group and sent to Thora Blondal, 206 New Barns Avenue, Ely, CB7 4RG.
Grant me the serenity to accept
the things I cannot change,
the courage to change the things I can,
and the wisdom to know where to hide
the bodies of anyone who ever said
"You're perfectly healthy: it's all in your head" |
Member Contacts
From time to time we get members contacting the committee asking if we can visit or make regular contact with them. Unfortunately, we feel as a committee that if we do this for one member we should be able to do it for all of you, but due to either being sufferers of ME ourselves or being carers we just don't have the time or energy.
However, we've taken an idea from Action for ME and decided to try a contact scheme - if you want to get in touch with other members, send your contact details to a committee member and we will publish them in the newsletter in our Contact Column - then it's up to you to pick up a phone, write a letter or send an email to whoever you want in the column. Please remember this newsletter gets posted on our website too so if you don't want your information there, let us know when you give us our details.
The Cambridge ME Support Group takes no responsibility for the members who contact you.
Current contacts on the list are:
Mireille Depledge 01223 416326 (10am-6pm)
Bryony Smith brysmith3@hotmail.com
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