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January 2010
Editorial
Kathy pic to come
Contents
W
elcome to the first edition of the new FMA UK magazine! I hope you share my excitement at this new venture and enjoy delving into all the news and superb features we have all presented in technicolour.
Meet the FMA UK Team..... 4
We kick off this New Year with an article on pacing and how to do it. Pacing is something we are always being told we should do, but what does it really mean in practice? And how do you go about it successfully? Sally Dixon’s article is full of practical advice and real life examples of how people with FM have benefited from introducing the ideas of pacing into their regular routine. Check out page 10. Our amazing front cover is courtesy of artist Madelaina Murthwaite, who is part of the Merseyside & Wirral fibromyalgia group and uses her talents to raise awareness and funds for fibromyalgia. The picture is called the 4Beats and has been painted in yellow and black, the colours of FMA UK. Recently she has opened a gallery and in this edition she tells us about the exciting events leading up to the grand opening and the celebrities she has managed to paint. Why not write in and tell us what you have been up to. Have you tried a new treatment that has made a difference to your symptoms or have you taken up an interesting new hobby? We would love to hear all about what your local group is getting up to and to feature your poems, stories and questions. Send all items to me at: editor.mag@fmauk.org I wish you a healthy and prosperous New Year and happy reading! Best wishes, (editor.mag@fmauk.org)
www.fmauk.org
Should I take the Swine Flu Vaccine? by Dr Jacob Teitelbaum ....................... 7 Local Group News .............. 8 Pacing and How to Do It by Sally Dixon ............... 10 The Lightening Process by Sally Mayor............... 14 The Northwest Conference by Alison Butcher ........... 17 Raising Awareness through Art by Madelaina Murthwaite ................... 20 Filming the NHS FM video by Suzanne Coutts ......... 21 Easy Hearty Soup for the Slow Cooker by Alyssa Savage ........................... 22
Kathy Longley
Fibromyalgia Association UK PO Box 206, Stourbridge, West Midlands, DY9 8YL 0845 345 2322 helpline 01384 895002 office fmaukoffice@aol.com fmauk@hotmail.com www.fmauk.org
The Year Ahead for FMA UK .......................... 6
Registered Charity No. 1042582 Benefit Helpline: 0845 345 2343 (Mon AND Fri 10 a.m.–12 p.m.) Advertisements: ads.mag@fmauk.org Subscriptions: subs.mag@fmauk.org
January 2010
Disclaimer The information given in this section does not necessarily imply endorsement by FMA UK. Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. FMA UK cannot be held responsible for omissions and/or errors. This section is copyrighted to FMA UK unless individual copyright is stated.
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Meet the
FMA UK team...
FMA UK is run by a dedicated team of volunteers together with two parttime members of office staff and the editor of the magazine. Meet the team…
The Board of Trustees Pam Stewart – (chair) Janet Horton
(benefits helpline)
Des Quinn
Gerry Crossley
(vice chair and website manager)
(national helpline coordinator)
Roger Leadbeater
(treasurer)
The trustees are responsible for the charity and all have a very active role in the day to day running of the organisation.
Medical Advisory Board Members Dr Kim Lawson
Dr Ernest Choy
Alice Theadom
Colin Beevor
(senior lecturer in pharmacology)
(consultant rheumatologist)
(health psychologist)
(rheumatology clinical nurse specialist)
Phillipa Newton-Cross
Dr Alan Edwards
Dr Raquel Rogers
Anne Johnson
(medical policy adviser)
(senior occupational therapist)
(senior physiotherapist)
(allergy specialist)
The MAB gives advice, oversees medical publications and inputs into All Party Parliamentary Group meetings. 4
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Regional Co-ordinators Jeanne Hambleton
Steve Westrop
Margaret Robson
Christine Brown
(South West, Surrey & Sussex and Berks, Bucks, Hampshire & Isle of Wight)
(Greater London & Essex)
(Kent)
Sue Strafford-Binks
Irene Logan
(Midlands, East Anglia, Beds and Herts)
Angelo Doherty
Jean Crossley
(North East)
(Yorkshire & Humberside)
(North West)
(Scotland)
The Regional Co-ordinators maintain contact with the local support groups in their region, help new groups set up and arrange regional meetings where possible. They often spearhead and support local awareness particularly with Primary Care Trusts.
Office Staff & Magazine Editor Chloe Southall
Laura Jones
Ann Tee
Kathy Longley pic to come
(magazine editor)
Shelley Chatterley Susan Pask-Hughes
The office staff are the ones that keep the information flowing and ensure our products are delivered. They are often the first contact people have with FMA UK.
Helpline Staff Sheila Keppie Val Mackeay Christine Brown Barbara Turley Yvonne Haycock
Jean Shirley Button Crossley Joan Smith Anne Seddiki Dee Stainer Wendy Jones
Julie Stephens Joan Leesley Antonia Morgan Denise Rhodes Janet McFarlane
These volunteers take calls on a rota system. Their empathy and knowledge are invaluable to callers who have often not talked to anyone who understands what they are going through. www.fmauk.org
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UK & World News
The Year Ahead for FMA UK By Pam Stewart
A
s I look back at what FMA UK has achieved each year, I wonder how we managed it and if we will be as fortunate in the coming year. Of course we can only do it with a lot of help and I’m glad to say this has been on the increase and has allowed us to do more and more.
improvements are made. We have a hard working passionate team that monitor the site and ensure a good service.
We always have targets for what we would like to achieve and then have to adjust these according to resources such as time, people and money.
We attended several professional conferences last year and have had an offer of shared stands for this year, so we should be able to go ahead with these if people can help. We have found professionals want to know more about fibromyalgia and are eager to talk to us.
Our main areas of work are: ●
Providing information about fibromyalgia
●
Being a national voice for fibromyalgia
The information is provided in many different ways to ensure we reach as wide an audience as possible and we are constantly extending what is available. As well as our information booklet, last year the booklet for young people was finally completed and printed and the booklet for medical professionals updated. Although we would like to provide information for employers and to children with parents with fibromyalgia, finances have not been forthcoming for these at present. We keep trying though. Of course this new venture of our own magazine is a very exciting challenge and we hope the mix we have included as a result of our recent survey proves to be successful. Please let us have your views so we can shape it into the magazine you want. The website has recently been updated and will continue to offer more services as further 6
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We still have a long way to go on the political front both in the UK and as part of the European Network of Fibromyalgia Associations. We will keep lobbying for greater recognition of the problems faced by people with fibromyalgia with our politicians and provide opportunities through meetings and events to meet with them face to face. As with any person with fibromyalgia, we have to pace ourselves and sometimes we do get carried away with what we want to achieve, but we have to be realistic. We cannot progress matters as quickly as we would like but we keep stepping forward and with your help, progress is being made. Thank you for all your support and for that which you are going to give in the current year. We wish you all an improved New Year. FMA UK
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Should I Take the
Swine Flu Vaccine? By Dr Jacob Teitelbaum
T
here has been a lot of publicity regarding the Swine Flu. Unfortunately, most of it has been sensationalistic nonsense, instead of educational and helpful. It is important to put the Swine Flu in perspective. The Swine Flu has been MUCH milder than the usual flu virus that hits the world each winter, which normally kills about 30,000-50,000 Americans – almost all elderly and chronically ill each year. Because of this, there is the usual yearly recommendation to get the flu vaccine. As of September 2009, the Swine Flu had caused a little over 500 deaths – or only about 1% as many as the normal flu – though it would be hard to tell this from the news stories. Sadly, the news media is learning that “fear sells.” On the other hand, truth is liberating. The bottom line? It is reasonable for people with CFS and/or FMS to get the flu vaccine, including the Swine flu vaccine, but not critical. For those who get severely ill when they get the flu, it is reasonable to get the vaccine. For those who get sick from vaccines or prefer to avoid them, it is best to skip them. For everyone else, it is simply a matter of personal preference. Still on the fence? Overall, I think the flu vaccine is a good idea for those with CFS/FMS who frequently get the flu (at least 1 year out of 3). Unfortunately, taking the swine flu may lower the effectiveness of the regular flu vaccine (and vice versa), so I would still simply get the regular flu vaccine instead. Most important to avoid the flu? 1. When it is going around, wash your hands after getting home from public places. The flu travels by “hitch hiking” a ride on your hands (when you touch surfaces touched by those with the flu) to catch a ride to your mouth or nose. Wash your hands when you get home to send the virus down the drain. www.fmauk.org
2. Get your 8 hours of sleep a night and take your Energy Revitalization System multivitamin to optimize your immune system. Especially important would be the zinc and vitamin C (both in optimal amounts in the powder). These not only help strengthen your immune system, but may even determine if the vaccine works (optimal zinc is important for vaccines to work). 3. If you catch a virus, take the ProBoost powder (1 packet dissolved under your tongue 3 times a day till the infection passes) as early in the infection as you can to jump start your immune defenses. This is good for children or adults, and I recommend a box in everyone’s medicine cabinet (the earlier in an infection you start it the better). 4. Another excellent treatment, if begun at the first sign of the flu symptoms (day 1), is a homeopathic remedy called “Oscillococcinum.” This can be found not only in health food stores, but even in many supermarkets and drug stores. 5. Meanwhile, avoid excess stress – like watching over sensationalized news reports. Remember, these are often geared to entertain and sensationalize (which is what sells ads) – not to give an accurate perspective. Energy Revitalization System multivitamin and ProBoost powder are products produced by Dr Teitelbaum. More information can be found at website: http://www.endfatigue.com/ Reprinted with the kind permission of Dr Jacob Teitelbaum.
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GROUP NEWS
There are hundreds of local support groups all around the country which put on fantastic events for their members and to raise awareness of fibromyalgia throughout the UK. Here are some reports of what some of the groups have been up to recently. It would be great to hear about what your group is doing, why not send in your newsletter to Kathy at: editor.mag@fmauk.org
The Nene Valley FM Group Raising Awareness At Weston Favell Shopping Centre
This was a two day event, ideally placed in the main upper mall’s walkway. Like most of the events, people were interested in taking away a flyer, having a more indepth discussion on their symptoms or the FMA UK booklet to show their GPs and find out whether they could have FM. The second day was Caption... just as busy as the first and by the time we decided to pack up it took us ages ending with a very slow push of shopping trolleys to put our equipment in the cars. We found the centre management extremely helpful and they even provided us with a display stand and tables. Once again our tombola was almost sold out! Thank you to Georgina & husband, Jackie, Joan and Tracy who came throughout the day to give Jackie, Roger and myself a break.
At Wellingborough Carnival
Last year we had a really successful day on a stall on the Saturday of this two day event, but as we also wanted to go to the Wooton event this year we booked Wellingorough on the Sunday. This proved to be an unwise move. Not only were there fewer small stalls as it was a day more like a music festival, we were placed just outside a marquee pumping out disco music (the bass being the worst as it made the ground shake beneath our feet and really affected Jackie and Marilyn who both said the beat was affecting their own heart rate). We complained and Caption... were moved about 20 8
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feet away from the offending marquee. This of course was not far enough to solve the problem but they were asked to keep the volume down, which of course only went back up as soon as the stewards left. People coming to the stall also wanted to get away from the loud noise and if it had not been for the Mayor of Wellingborough making a donation we would not have covered the cost paid for the pitch.
At a Walk in the Park event at Wooton Fields We only took our single gazebo to this event but there would have been plenty of room for our double-sized one, especially as the pitch was free. The day went very well and the weather was good (too good for some who suffered sunburn). The photo shows me (Heather) with the Mayor of Northampton who was very interested in our awareness raising and was particularly keen in the problems experienced in getting recognition, diagnosis and appropriate treatment from the medical profession. He was kind enough to offer his help by coming to open any future event we had as the press will be more likely to cover it. He even gave us his secretary’s direct telephone number so we could get straight through to his office if we felt he could be of assistance to the group.
Awareness Raising Grants for Medway By Margaret Robson
Grassroots Grants has awarded the Fibromyalgia Support Group (Medway) £2207 for awareness events during 2010. This grant is for hall hire, 10,000 of our own updated leaflets and 100 of our own Information Packs. It is also for refreshments at the events and for promotional material, as well as stationery to publicise the events. Grassroots Grants is a Government funding source for small charities and voluntary organisations that has been in existence for over 12 months and is administered by the Community Development Foundation.
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The Medway Support Group would also like to thank UK Fibromyalgia for the grant of £120 that they have been awarded for photocopying costs of articles for the events. We hope to hold the events in May for International Fibromyalgia Awareness Day and in September for UK Fibromyalgia Awareness Week.
New Groups Sittingbourne & Sheppey FM Support Group Group Leader: Maria Abbey Tel: 0845 458 3778 Email: sandsfibrosupport@googlemail.com
Barnstaple FMS Group
Group Leader: Carol Hand Tel: 0845 543 5654
Getting Active in West Cornwall
By Trisha Miners
The group has received a grant of £250 from the Coastline Housing Association to fund swimming trips for group members at the nearby Gwelanmore Holiday Park. Group members are also able to enjoy the sauna and Jacuzzi Swimming at Gwelanmore Holiday Park. facilities to help them unwind after their swim. This has been great, not only health wise but also for interaction and isolation issues. The pool team of the Lounge Bar, Camborne held a pool marathon of 24 hours and raised £480 for the group to pay for the purchase of T-shirts. The group held a competition for the T-shirt design, which has now been put into production so that each group member will
receive one and then some can be sold to create revenue to be put back into creating more products to raise FM awareness, the profile of our group and of FMA UK. The group sent a donation of £80 to FMA UK. Two members of the support group, Francis Long and Peta Redmore, did a sponsored walk of 12 miles from Devoran to Portreath together with friends and family. This, I feel was an amazing effort put in by all. We have yet to tot up the amount raised, Sponsored Walk. but it is approximately £200. This money is going to help with merchandise and a little for our Christmas bash, which after last year’s event should prove to be a great success.
Do You Need a H.A.N.D.? By Ann Tee
A new group, the Halesowen and District FM Support Group (H.A.N.D.), has been launched filling in a space in the bigger picture of dots around the country where support groups are sited. In fact you could say we have joined up a few dots! The group’s meeting place is at Zion Christian Centre at Little Cornbow, centrally placed in Halesowen busy town centre close to the bus depot. Zion Church has been asked a number of times about why there was not a FM group held there, as many community activities are located within the facilities already. Christine Brown, the Midlands RC and Dudley Community Voluntary Service (CVS) have been most helpful assisting me as temporary group leader. The CVS has provided us with information of various types and actually signposted us towards media access locally. I have previously been involved with another group and heard via HQ in Stourbridge, where I help out occasionally, that the person in Halesowen could not continue either as group leader or helpline operative. So, H.A.N.D. was born.
A 24 hour Pool Marathon.
www.fmauk.org
Meetings are being held on the second Tuesday of every month starting at 1.30pm and finishing at approximately 3.30 pm. Everyone attending will be given a warm welcome and support will be offered by current members to any new members.
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Pacing and How To Do It By Sally Dixon
A
s we enter a new year, many people will be taking the time to re-assess their lives, perhaps even making a list of New Year’s resolutions. For those with fibromyalgia, committing to regular gym visits may be out of the question. So what can we do in the coming year to improve how we manage this debilitating condition? Many people with FM are advised by medical professionals to practise pacing – yet few are actually offered training in this elusive skill. Some patients are lucky enough to be offered a course in pain management, where practitioners teach pacing skills alongside relaxation techniques and cognitive behavioural therapy (CBT). Emma, a stay-at-home mum of three, was taught pacing by an occupational therapist at a pain management clinic. “I used to rush around every Saturday, cleaning, doing laundry, taking the kids to and from football,” she said. “By Sunday, I would be exhausted and unable to get out of bed. My husband would look after the boys while I slept all day, so I got no ‘fun time’ with my kids at all. I’d spend the next few days feeling not only tired but also guilty about how little time I’d had with my family.” This sort of ‘activity cycling’ is common to many and it was only when Emma explained her hectic
schedule to the occupational therapist that she realised how irrational it was. “It suddenly dawned on me that I was rushing around trying to make a wonderful home for my family but was then too exhausted to enjoy either it or them!” she said. The therapist showed Emma how to plan a weekly routine which helped her spread the household jobs throughout the week, scheduling in rest time as a priority rather than an afterthought. Now she has adjusted to having regular rest periods, Emma finds she has more energy and therefore more quality time with her children. “I do a better job now of keeping on top of the housework because I do a little bit each day,” she explains. “Looking objectively at my routine, I could see that I was wasting time on jobs that weren't really necessary – or could be done by someone else! The kids now make their own beds, and my husband cooks the weekend meals – saving me a couple of hours a week!” In order to maintain her routine, Emma spends 20 minutes every Sunday evening looking at her calendar. She looks not just at the week ahead, but also the coming month. She marks in rest periods, activity periods and jobs that she must do that week. If she has a busy day coming up, she plans a longer rest period for the day before and the day after.
“highlighted sentence to go here...” 10
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David, aged 40, is unable to work due to FM but uses pacing techniques to manage his illness: “It’s easy to get stuck in a rut when you’re at home all day. It took me a while to realise that staying in bed all day was actually making me more ill, not less. The more activity I can fit into my day, the less pain I am in and the more I feel I have achieved. I have a carer who does the cleaning but I still do a little dusting each day. That way, if I can’t Being able to say ‘no’ (and to not feel guilty about it!) is a key component to striking a healthy balance, especially at a busy time. If you have difficulty in this area, counselling can help and can also teach us how to be more assertive about our own needs. It is also crucial that we learn to say ‘no’ to ourselves. Try to monitor your own thoughts and recognize the urge to do ‘just one more job’. Most importantly, prioritise your own health needs rather than leaving them as an afterthought. Get out of the house, I’ve still had some exercise.” More intensive pacing techniques involve timing how long a person can do an activity before causing an increase in symptoms. Sheila, aged 56, had to retire from her job as a support worker due to ill health. She was asked to complete a chart for a week, noting down each activity and her pain levels before, during and afterwards. She was then set limits on how much time she should give each activity, before switching to a different one. These limits were set by calculating the average amount of time Sheila could spend on a particular activity before a marked increase in pain; the final figure was given as 80% of that time. Sheila’s pacing times were set as 10 minutes standing, 8 minutes walking and 15 minutes sitting. By encouraging the person to gradually increase these times, the emphasis is placed on increasing activity overall, thus giving the person much greater control of their own life and a real sense of achievement. As many people with long-term pain conditions are also susceptible to depression, they are encouraged to strike a balance between activities done out of necessity and those done for pleasure. Sheila was advised that her standing time could be spent doing an activity that she enjoyed such as cooking, then she could do a sit down activity for 15 minutes followed by a short break before returning to her standing activity. www.fmauk.org
The aim was to create a routine which allowed Sheila to keep pain to a minimum whilst maintaining as much activity as possible. Not only did this create a balanced framework to Sheila’s day, it also allowed her to ration out her energy more evenly thus increasing what she could manage to do each day. A key component of pacing is ensuring that rest periods become a regular part of the schedule, thus preventing the pain from escalating. These rest periods should be quiet times, ideally without the distraction of the television or computer. Establishing a pattern of alternating activities is also important as it decreases the likelihood of pain caused by repetitive movement.
“highlighted sentence to go here...” It is important to recognize that pacing does require work – it is not a skill that comes naturally. Rachel, who works with autistic adults, attended a pain management course at her local hospital. Over twenty sessions, the course covered subjects such as the impact of positive thinking, posture and pacing. Despite her training Rachel often finds the urge to ‘do’ over-rides the knowledge that she must not ‘overdo’: “I get really depressed if things aren’t the way they should be,” she says, “so as soon as I feel ok, I rush around like a mad woman doing all my jobs just in case I’m ill again the next day.’’ This will be a familiar story to many people with FM. However, for those prepared to make the effort, the rewards can be substantial. By making a conscious effort to use pacing techniques, we can still manage to complete tasks – in fact, those who practise pacing effectively often actually achieve more.
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So, as we move forward through the year, how can we use pacing skills to greatest effect? Firstly, take the time to plan ahead. Consider using a pacing diary so that you can plan the weeks and months ahead carefully, striking a balance between activities, exercise and rest.
Wishing you a very happy new year. For further reading, please follow the links in these references:
Delegate tasks to other family members – even young children can do their share. Little ones get a great sense of achievement from helping mum and dad with basic tasks such as sorting laundry and dusting. Older siblings can learn to prepare a simple meal or assist with household duties. If family and friends cannot understand your need to protect yourself from over-activity, consider sending out a short letter or email explaining that you have made a New Year’s resolution to manage your condition better. Say that you would prefer to have quality time with loved ones rather than spending it ill in bed, and therefore you will be making a conscious effort not to overdo things. Explain that taking regular short rest periods will give you the energy to really enjoy your family and friends.
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Action for M.E, (2007). Pacing for People with M.E [online]. Available from http:// www.afme.org.uk/res/img/resources/ Pacing%20booklet%2019%20March%2007.pdf [Accessed 18th September 2009] Jenner, Dr C.A. MB BS, FRCA (2007). Pacing and Chronic Pain [online]. Available from http://www.londonpainconsultants.com/ articles/2007/06/16/pacing_and_chronic_pain/ [Accessed 19th September 2009] Sternbach, Dr R., (1987). Mastering Pain: A Twelve-step Regimen for Coping with Chronic Pain, London: Arlington Books Ltd. © Sally Dixon 2009
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The Lightning Process By Sally Mayor
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n a cold Saturday evening last January, in the centre of London, surrounded by tourists and people going out for the evening, I found myself crying on the tube. People looked at me oddly and I smiled back at them. At my stop, I leapt off the train and ran up the stairs to the exit past scores of people, I was literally overcome with happiness that I couldn’t keep in. The week before I hadn’t been able to walk up the stairs in my house and had ended up crawling up to bed on my hands and knees, sobbing. That Saturday, on the tube, I had just completed the first day of the Lightning Process. I suffered from fibromyalgia for almost 5 years before I recovered and was used to the pain and fatigue and not always being able to walk. At the age of 28, when it hit me, my life was transformed. I had been outgoing and sociable with a full-time job, doing lots and having lots of fun. During the Christmas of 2004, I got flu and I felt dreadful but instead of stopping and resting I carried on and tried my best to ignore it. The flu went after about a week but I was never able to sleep deeply again after that and I always woke up tired no matter how much I slept. For months I was exhausted until, in March 2005, I got a chest infection. My GP gave me three courses of antibiotics, but nothing helped, and I became more and more ill until I couldn’t walk from one room to another without being out of breath. I'd already stopped doing lots of things - playing squash, walking along the Brighton seafront, going out and I'd been signed off work for weeks. Eventually I couldn’t go to the supermarket, cook or look after myself at all so, in June of that year, very unhappy and scared, I moved back to my parents’ in Leicestershire.
So, fibromyalgia pretty much ravaged my life. I read everything out there about it and I knew that there was no cure and that I could expect to be ill for the rest of my life. I knew too that time might improve my symptoms but I’d never get my life back, not really.
I was diagnosed with fibromyalgia in September 2005 and at about that time I had my first experience of being unable to walk. I’d got used to only being able to sleep on my back because of the pain of lying on my front or side, was used to taking several types of medication and I was living one day at a time. It could take me 6 hours just to have a bath and get dressed because my body simply wouldn’t work. 14
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Fibromyalgia took its toll on me mentally too and on one occasion I flipped out, smashed up a few things and jumped into my car, not knowing what I was going to do or where I was going but knowing that I couldn’t go on with this body that didn't work. I ended up on the east coast with police forces from two counties looking for me, worried that I was going to take my own life. About 2 years later, I had another breakdown and needed a lot of support from doctors, counsellors, friends and family once I’d been discharged from hospital, having being found by police and an ambulance crew after an evening of alcohol and painkillers.
I heard about the Lightning Process after I’d been ill for about 2 years from a family friend who knew a young woman who had recovered by doing it, but it took me 3 years to actually do it myself. At the time I heard about it, I’d invested so much physically, emotionally and financially in trying to get better I simply didn’t have the strength to try something else. I’d seen an infectious disease specialist, a rheumatologist, a neuromuscular specialist and two GPs. I’d taken six
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different prescription drugs and was on three types of medication a day. I’d tried aromatherapy, homeopathy, acupuncture, counselling, therapy, reflexology, reiki, yoga, swimming, meditation, eating certain foods, not eating certain foods....the list goes on and on. And then, in January 2009, something in me switched: I’d had enough. I’d met someone, fallen blissfully in love, and was starting to think about my future and what I wanted. I’d also done some coaching in 2008 and one night I came across a quote from the course:
“
Begin taking action now, while being neurotic or imperfect or a procrastinator or unhealthy or lazy or any other label by which you inaccurately describe yourself. Go ahead and be the best imperfect person you can be, and get started on those things you want to accomplish before you die.
”
The late Japanese psychologist Shoma Morita. That was it. I had to try and get myself better. I immediately started researching the Lightning Process. Knowing what I did about fibromyalgia, at an intellectual level I didn’t think it would work but at a deeper level I believed it could. I found out everything about it, contacted the family friend and signed up for the next course in London, which was happening later that month. The course takes three days and costs £600-£800. When you apply you have to prove that you are open to it working or you can’t do it. There’d be no point in trying to cure someone who’s determined not to get better so you have to be mentally ready. And you have to be prepared to work. It doesn’t happen to you and it’s not a magic pill but however ill you are you can do it. The course is a mixture of neuro-linguistic programming (NLP), self-hypnotherapy, osteopathy (viewing illness holistically) and counselling. You don’t have to know what those things are or have done any of them before, you simply have to turn up with an open mind. On the first day you learn what the Lightning Process is and how to do it. Essentially, it is a simple combination of movements and speaking out loud to counsel yourself and change whatever it is you want to. It works on the premise that when a person with fibromyalgia experiences a minor stress their body produces too much adrenaline, this then tires the adrenal system and translates into the pain and fatigue. The process takes about 30 seconds to perform and breaks this cycle. www.fmauk.org
As soon as you recognise that you are feeling fatigue or apprehensive or worried or angry or impatient or pain or anything that you don’t want to feel (the process can be applied to anything) you do the steps, which are easy to learn and follow. NLP allows you to tap into your brain, you can stop the adrenaline production and rather than reinforce the neural pathways of the negative experience you have become used to, you can create new neural pathways. By repeating the process over and over again whenever you need it, the new neural pathways are strengthened and the previous damaging neural pathways become weaker and weaker. This may sound hard to understand or believe and most of the first day is spent discussing and exploring how it works. Our practitioner explained how NLP is becoming more and more commonplace and that counselling is changing as mental health practitioners recognise that we can control far more of our brains than was ever thought possible. Instead of strengthening negative pathways by, for example, talking about the same negative experience over and over again, it is better to create new positive neural pathways and reinforce these. The next two days of the course are spent exploring the process further and understanding when and how you can use it. I was better at the end of the first day; I ran up the stairs of that tube station and I’ve been well ever since. A couple of weeks later I jumped out of a plane at 12,000 feet to remind myself I was alive, something I wouldn’t have dreamt of doing a few weeks earlier. Now I live in London with my partner, I work full-time and I have my life and my future back. I still cry with joy regularly especially on the way to work when it strikes me just what I've achieved. I don’t take any medication, I have no pain, depression or fatigue beyond the normal for a busy life and I haven’t had a single day since when I couldn’t walk, something I give thanks for every day. I urge you to take back control of your life, do the Lightning Process and ‘get started on those things you want to accomplish before you die.’ © Sally Mayor 2009 For more information see website: www.lightningprocess.com Please note that I am not affiliated to the Lightning Process or any of its practitioners in any way.
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The Success of
FIBRODUCK
Fibroduck has captured the hearts and imaginations people throughout the UK, popping up in all kinds of places to raise awareness of FM and adding some light-hearted humour to many an event. We have witnessed his intrepid adventures in the magazine with reports of sightings at Land’s End, the Blackpool Tower and even the Fourth Plinth in Trafalgar Square. Fibroduck’s travels started gaining notoriety on the Internet through Facebook, thanks to LisaK (Lisa Knowles) and her now 600 strong group of duck companions (check out Fibroduck’s Facebook group at http://bit.ly/fibroduck). This and items on the FMA UK website helped to inspire the creation of fibroduck.com, where Duck is currently preparing to launch his first video on You Tube to be released in time for National Awareness Day in May. Jamie Goodwin tells us more about the creation of fibroduck.com and Duck’s every increasing popularity...
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few years ago I was a successful stand up comedienne working the London circuit. My health (which had never been great) deteriorated to the point where I had to stop all bookings. I couldn’t be relied upon being well enough to turn up and when I did, I found myself unable to remember my set. Two bouts of pneumonia in 6 months meant that I also had to quit my day job. We had decided to relocate outside of London and moved North in September 2008. As the removal van was being loaded, I nipped to hospital one last time for blood tests. Two weeks after moving and still submerged in cardboard boxes, a letter arrived. It stated that I had chronic fatigue syndrome and fibromyalgia, with recurrent viral infections. In utter confusion we turned to Google for answers, ending up at FMA UK's website. Suddenly it all made sense, everything started to add up, and one by one the blanks were filled in. The thought of having to give up my comedy career devastated me, and that was my lowest point. Our internet research made it clear I would never be that person again. Slowly I started to accept the situation and I’m now writing freelance when health allows.
When I came across the Fibro Duck idea that FMA UK had begun, it appealed to my sense of humour. I decided to create a site (by way of thanks) especially for Duck, with the added ingredient of laughter. All the ducks sent out by me are identical – small, yellow and covered in black spots. The idea is to create the illusion that it’s the same duck in every photo. Since fibroduck.com launched on September 1st 2009, I’ve had over 300 photos submitted from people all around the world. So many people have left messages, saying that looking at the photos gives them that feel good feeling. So not only are we all raising awareness, but we’re also raising many a smile along the way. I’ve also started a weekly competition: participants have to photograph Duck with a named person or object, e.g. a policeman or road sign. The first to submit the winning photo wins an exclusive prize such as a fibroduck.com car window sticker or bumper sticker. Plans have recently been announced to create Duck’s first video. The idea is to get lots of groups filming themselves singing the classic children’s song ‘There once was an ugly duckling’. I’ll edit the clips together to produce our video, due to be released on You Tube in May 2010, in time for national awareness day. All we ask is that you add an element of humour to your photos and that your duck looks identical to ours, spots can easily be added with a black marker. Tell us your name and where your photo was taken, we'll add it to Duck’s destination list. Please email your photos to fibroduck@live.co.uk .
Jamie’s favourite photo of Fibroduck ‘Living the Student Life’)
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Fibroduck is available to purchase from FMA UK priced at 5 for £2. Contact the FMA UK office at: PO Box 206, Stourbridge, West Midlands, DY9 8YL or by e-mail at fmaukoffice@aol.com
January 2010
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The North West Conference 2009 By Alison Butcher
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ow, wow, wow, what an amazing day! The North West Regional Conference has left me feeling all excited, inspired and uplifted by the whole experience. One of the things that struck me as I drove home was that Sue (our esteemed leader and conference organiser) had brought together not just an amazing mix of professional people, but a group that care about the fact that we have fibromyalgia and they want to do something about it, to help try and improve our quality of life. As patients we often feel we don’t get the treatments, drugs, responses from medical professionals that we want. Well, this group may not have all the answers or the cure but they do care, they do believe us and they are listening and trying to improve things. If we could bottle their passion and enthusiasm and hand it out all over the country, around the NHS and the government I have no doubt we could achieve amazing things! I arrived at the conference in good time and it was lovely to be greeted by the lady who runs the venue where it was being held. Registration was quick, simple and well organised. Upstairs the sponsors were all there to talk to us about different products that may help us. I had a glass of Cherry Active from John and saw
Sue Strafford-Binks presenting the Mayor of Wirral, Councillor Andrew Hobson and his wife Karen, with a conference bag
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Committee members who helped on the day. From left to right: Maddie Murthwaite, Karen Oliver, Karen Hobson, the Mayor of Wirral, Sue Strafford-Binks, Alison and Jaki.
Maddie with information about her amazing exhibition of paintings which she uses to help raise awareness of fibromyalgia. Jaki and Karen were busy selling raffle tickets. All the committee members and speakers then greeted the Mayor of Wirral, Andrew Hobson and his lovely wife as they arrived and, as designated photographer, I took lots of photos of everyone. Sue Strafford-Binks, regional co-ordinator of the North West was introduced by hubby and sponsor Chris. Sue has spent 2 years organising the entire conference but because it all ran so smoothly it’s hard to comprehend the sheer amount of work she had to put in to achieve it. (As we don’t have regional funds Sue even used her own money to pay for everything up front and took a big financial risk!) The Mayor then talked about the importance of groups like ours and how volunteers, like Sue, help to make our communities work. It was great to see Sue being recognised for her efforts, in fact all the speakers said lots of nice things about Sue and the relationships that have been established over so many years. Dr Andrew Logan, consultant in pain management from the Countess of Chester hospital, was our first speaker. It was great to hear his perspective on pain including the biological, psychological and social causes and consequences of pain. He gave us lots of useful, detailed information on all the drugs available and how they work, plus the consequences of taking such medications and the side-effects that often seem to get missed! A whole variety of treatments were discussed and Dr Logan emphasised the importance of looking at the whole person and treating them as an individual as
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compelling reasons why we should be doing it – including improved health and isn’t that what we all want? Finding a way to make exercise FUN has to be one of the most important messages (Wow – exercise and fun appearing in the same sentence – hope you send that fiver in the post Dave.....just kidding).
Left to right: Dr Nina Bailey, Dr Andrew Logan, Karen Hobson, Dr Clark Noble, the Mayor, Sue Strafford-Binks, Dave Cooper, Dr Yee Chui and Pam Stewart.
there is no “perfect” treatment plan applicable to all patients. It was refreshing to hear a consultant talking about the importance of listening to and educating the patient and how care should be provided in the community not just in hospitals. Our next speaker, Dr Clarke Nobel, is a dentist whose Mum has fibromyalgia. Clarke had clearly spent a lot of time trying to research fibromyalgia, but found there is little information available relating to dentistry. Clarke is far from being a scary dentist, in fact he even has a sense of humour, as shown by his entertaining slides which made the audience laugh! Unfortunately, whilst fibro patients can’t hold their mouths open like Hippo’s we can certainly experience more pain from even simple procedures. Through his experience of treating fibromyalgia patients he explained simple things we can do to help and the things dentists can also do to improve our experience of going to the dentist, reducing both pain and discomfort. Those gum disease slides and hearing we are more susceptible to it is a good enough reason for us all to invest more time focussing on our oral health. I shall definitely be having words with my dentist on my next check-up and I will never again store my toothbrush in the same room as the toilet after learning that thousands of germs fly into the air every time the toilet gets flushed! Dave Cooper, personal trainer at Total Fitness certainly had his work cut out trying to convince over 100 fibro patients that we should all be exercising on a regular basis! Let’s face it, none of us are fit. Raising and waving a hand was a good way to prove we can all exercise and after a few minutes he had us all on our feet marching on the spot with our arms in the air laughing – and yes I took photographs for evidence! There always seems to be lots of reasons/excuses for us not to exercise but Dave put forward far stronger, more 18
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Pam Stewart, chair of FMA UK, took us through the key things the charity has achieved over the last year from all the lobbying that we have done, writing to MPs and MEPs etc, including the signing of the European declaration and a debate in Parliament. It’s so important as members that we write to our MPs telling them about the problems we have living with the condition, accessing treatments and benefits etc, and asking them to sign up to the Fibromyalgia All Party Parliamentary Group (APPG), as this is our opportunity to make a difference. They aren’t impressed by “template” letters. If we want MPs to act for us, we have to take action as individuals (this can also be done via the internet)! I was very impressed by all the services available through head office and was staggered to hear the forum on the FMA UK website has over 5000 members and in August the FMA UK website had 3,450,681 hits! The morning was so interesting that before I knew it, it was time to have lunch! I sat with a couple of lovely ladies who run the East Lancs group whilst I tucked into a lovely lasagne, followed by a huge wedge of fudge cake and cream (hmmm all that talk of exercise must have worked up the appetite – oops maybe I should have gone for fruit salad!). The raffle was drawn after lunch and we raised £100 for FMA UK with lots of great prizes for the lucky winners! After lunch, consultant rheumatologist Dr Yee Chiu, explained how our fibro symptoms cross over with many other conditions and how symptoms can be grouped together to form classifications rather than distinct diseases. I have a better understanding now about why medical professionals may struggle to reach the correct diagnosis. We often hear that there isn’t much research for fibromyalgia so it was interesting to hear about various studies that have taken place and refreshing to hear of a consultant actively involved in researching fibromyalgia. We can take reassurance that doctors should not dismiss us as neurotic although managing a patient’s expectations through a treatment plan can be a challenge! There are big differences around the country regarding the availability of treatment and funding so we are lucky in this area to have both Dr Logan and Dr Chiu evaluating how these services for patients can be delivered most effectively albeit within a smaller budget
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then they would like and this topic formed part of the panel discussion later on in the afternoon. Our last medical professional to speak was Dr Nina Bailey, who works for a company called Igennus who have researched the importance of fatty acids in the diet. She explained how we all need fats in the diet but they need to be in the correct ratio of Omega 6 to Omega 3. We learnt how levels of the wrong sorts of fat have increased in diets overtime and what we can do to restore that balance and how that can lead to an improvement in our fibromyalgia symptoms. Stephen Hesford MP’s talk complimented Pam’s earlier talk by explaining in greater detail what APPGs are and where they fit into the government. The first ever debate on fibromyalgia was held in the House of Commons this year, and the importance of it was explained. Any debate held must receive a reply from the appropriate person and for us it is the Minister of Health, Ann Keen MP. Stephen Hesford explained how our access to the treatments that are available for fibromyalgia varies across the country. The day was rounded off with a panel debate, giving those present the opportunity to direct questions to the speakers. Bringing this group of diverse, influential, professionals together on a panel all discussing
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fibromyalgia was fascinating. I felt it gave an insight into the potential for improvement, for example, to access of care that could be achieved for fibromyalgia patients if we have the right people in place (including GPs) with sufficient funding and support from the government. At the end, after everyone had left, tired and aching, I sneaked back out to the sponsors stands and lay down on a vibrating massage bed that Adjustamatic had brought to demonstrate. Sue came out to see her secretary having a sneaky rest and a foot massage! Even though the conference had gone over time and I was exhausted, I felt the day had flown by and I still wanted to hear more so it must have been good! This conference was the best fibromyalgia event I have been to and full credit has to go to Sue for organising such an amazing day. You truly deserve the Pride of Britain Award we nominated you for as you are our local champion! Thanks to all the sponsors, everyone who helped including the education centre and the patients who came and supported this conference. Of course the day would not have been possible without all of the fantastic speakers who were so passionate about their subjects and focussed on working to improve the lives of fibromyalgia patients. Thank you all for such a special day.
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Raising Awareness of FM through Art By Madelaina Murthwaite Madelaina was forced to give up her teaching career when she developed fibromyalgia in 2007. Having previously only ever painted the bathroom, she decided to have a go at copying pictures she had taken on a digital camera and soon discovered a natural talent as an artist. An art tutor pointed out her natural ability for portraiture and encouraged Madelaina to pursue her talent. Her first portrait of Ringo Starr was snapped up when it went on display at the Academy of Arts in Liverpool as part of an exhibition. Since then, Madelaina has been doing a superb job of using her talents to successfully raise awareness of and funds for fibromyalgia. This year she is celebrating a year in the public eye as an artist, fund raiser and fibromyalgic with her own exhibition entitled ‘Icons in the Picture!’. Here she tells us about the exhibition and her new exciting project of opening her own gallery….
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he exhibition was opened by international vocalist Miss Laura Critchley, who I had coaxed to attend by including four paintings of Miss Critchley in my exhibition! It was from here that I was approached by Clayton Square shopping centre and asked to exhibit in one of their empty shop windows. Clayton Square is in Liverpool city centre and a great location for the public, so I seized the opportunity! During my time in Clayton Square I appeared on BBC Radio Merseyside discussing fibromyalgia and my new talent as an artist. I was also invited to talk live on the Radio City’s formidable Pete Price show! It was here that listeners contacted me and I was able to offer them advice and introduce them to the fantastic support group, Merseyside and Wirral Fibromyalgia Group! Shortly after the broadcast comedian and entertainer, Mr Ricky Tomlinson, contacted me and arranged for the portrait I had painted of him (so aptly named: ‘Royle T!’) to be signed and auctioned to raise funds for fibromyalgia! To date I have three portraits in my repertoire of celebrities, which I hope to auction for fibromyalgia when I have at least ten signed! Names include Mr Ricky Tomlinson, Miss Laura Critchley and the gorgeous
Modfather: Mr Paul Weller! I am constantly seeking out celebrities and trying to win their approval, a hard task even in good health! However, I will not be beaten as when one door closes on I am determined to open another one!
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During my 6 week stay at Clayton Square it dawned on me that this location would be an ideal place for a gallery! It would be a gallery that abolishes stereotypical pretensions of others and brings art into all areas of the community and one that will support local talent able or otherwise and be ideal in raising awareness of fibromyalgia. So, on 31st October 2009 at 11.30am I opened The Gallery, Liverpool’s Best Kept Secret and I am all set to develop links with the community. I know that realistically The Gallery won’t run on thin air and I’m searching every avenue to gain support from benefactors or sponsors. This month I’m organising a variety show in Liverpool to raise funds for The Gallery and fibromyalgia, and I’m very fortunate to have the support of local variety artists, who are all sensational! The artwork on the front cover is my ‘4Beats!’ which has been painted in the colours of Fibromyalgia Association UK. This original design has been printed onto black unisex T-shirts and is being sold to raise awareness and funds for fibromyalgia. The T-shirts cost £20 and can be shipped to your home.
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Madelaina can be contacted at www.madelainartz.com and you can find her on Facebook: search for The Gallery, Liverpool’s Best Kept Secret! So why not show your support and join the group?
January 2010
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Filming the NHS Kathy’s Wedding By Pam Stewart choices video on FM
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By Suzanne Coutts
first saw the advert for the NHS choices video in the FaMily magazine. It appeared again on the FMA UK website and I thought, “Oh I wonder if I ought to apply, I’ve got quite a positive attitude and Fibro is not the end of the world and anyway it’s not likely that I will be picked as there must be loads of fibromites across the country applying.” So I gave it a go. Boy was I surprised when after a few weeks I had an email, as I’d forgotten all about it. I opened it thinking it would be a ‘sorry we’ve had so many applicants and you have not been successful' email, but it wasn’t, it was: “We’re delighted to tell you that you have been chosen because of your positive attitude, if you would like to go ahead please confirm” I didn't know what to think, it was ‘wow’, joy at being picked but also ‘help’ this is scary. Will I be able to do what they want? After a few phone calls with the NHS and the film maker, I suggested that rather than filming at my home, which was the usual format, they could come to the hydrotherapy group run via our support group, which I thought would show a positive aspect of what you can do with fibromyalgia. So the filming day arrived. I was quite nervous at the prospect, but I needn’t have been. I arrived and met a lovely young lady who was to do every aspect of the recording. She really put me at ease and we filmed for about an hour in the pool and the jaccuzzi with the other members of my group, and it was almost as relaxing as usual. Then afterwards we did an interview with just me answering questions for about 20 minutes, although we did have to go back over what I’d said a few times, as fibro fog was kicking in at every opportunity! Then eventually ‘it was a wrap’. The worst part of all was waiting for it to be released as I wouldn’t get chance for a preview. It would be straight onto the internet, all rather daunting! But eventually after quite a long wait, I logged on one morning and there I was in full glory. Pictured on the first page of the section on fibromyalgia! With intrepidation I clicked onto my picture and watched the 3 minute interview. It was okay, I looked not too bad and I sounded okay. What a relief! So finally I’ve had my few minutes of fame, all be it on an internet website. But it was certainly worth having a go. I believe that with fibro if you have a positive frame of mind it really helps you to do more and be more and if you haven’t got that positivity then there are courses like the Expert Patient Programme run by the NHS which will help you to start moving in a positive direction. It does take a little effort though!
You can see the NHS FM film Suzanne is in at: www.nhs.uk/conditions/fibromyalgia/Pages/Introduction.aspx
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his eagerly anticipated event captured the essence of Kathy and her new husband Paul. It was meticulously planned, lovingly executed and was thoroughly enjoyed by all who attended.
Both Kathy and Paul looked magnificent in their wedding gown and suit, with colour co-ordinated bridesmaids and waistcoats. The service in Kathy’s Baptist church gave opportunities for people to offer advice and support to the couple and the singing group performed excellently whilst the register was being signed. The first reception was in the church building with canapés and the cutting of the cake and a chance for the congregation to throw confetti and watch Kathy not get chocolate sauce down her wedding dress. It was then on to the formal meal at the country hotel and the speeches. The classic of these was the bestman’s with illustrations that had everyone in stitches and gasping at Paul’s antics.
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In the evening it was time for dancing and Kathy was still running on adrenalin as she and Paul started the dancing. Kathy was still going at the close at midnight. I think it must have been the chocolate fountains that kept her going. A wonderful day for a gorgeous couple that I am sure was enjoyed by everyone. We all wish you health and happiness in your life together.
January 2010
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Easy Hearty Soup for the Slow Cooker By Alyssa Savage
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s we all know, having FM can be a big issue when it comes time to preparing meals (that is unless you are lucky enough to have somebody do them for you!) and with the credit crunch, not to mention many of us being on benefits, finding meals that are easy, go the distance and are cheap too, can make things a bit more of a challenge. A few things that I have personally found that have made a huge difference is investing in a large slow cooker (mine holds 9 litres), and from this making meals stretch a long way. So, in making something different once a week, from soups to stews, I start having a really good variety of meals sitting in my freezer ready to thaw and heat. The other thing that I love with the slow cooker is that things don’t burn! And I don’t have to constantly babysit it – just a stir here and there every few hours. On top of a slow cooker, the other thing that I have always made sure I have had is a good sized freezer – and when I haven’t had one, I have traded neighbours/ friends with a bit of the meal that I have made in order to get some storage space! In regards to storage containers, I have just saved over time large ice cream containers with good lids and they have stood the distance of time. Not good for microwaving, but FREE!
don’t work... and I was constantly throwing fresh veg out from not getting a chance to use it up – something I hate to do. Therefore, we rarely buy fresh vegetables at all anymore, and in turn buy a variety of frozen – from mixed veg varieties, stir-fry and things like green beans, carrots, cauliflower etc. There is NO wastage, we eat what we need, and although obviously not as great as fresh, I would rather have the ease of using frozen, no waste, no hassle and keeping our budget low in doing so. Here is one of the staple recipes I make once a month. It is a thick soup, full of lots of good things – great for taking to lunch if you work (or for family who do) or just as nice with a bit of bread and cheese for dinner or a hearty lunch. For this recipe I use frozen vegetables, but of course fresh are great (and are listed in amounts in brackets). This is enough to fill a large slow cooker, but you can cut the recipe down to fit the size of pot that you have.
When we are well, it is hard to imagine that peeling things like carrots and chopping onions is such a big dea... but when we are not well, it is jobs like this that certainly make things more of an effort, not to mention the repercussions (pain and soreness) after the fact. Perhaps for many of us, it stops us from making foods that are good and healthy for us and for our families.
In addition, I always go through my fridge, cupboards etc, and add things here and there to change the soup – from a tin of baked beans to a bit of leftover rice or meat. I hope you enjoy this soup as much as we do and find it easy to make, too!
This year, in reducing our budget for food dramatically, I have found shops like Farm Foods, Iceland and even some freezer sections in bigger grocery stores offering a plethora of frozen, prepared vegetables and many fruits, too...and from my experience, in many cases they are just as cheap (if not cheaper) than buying fresh and having to prepare them myself.
(at least 15-18 servings)
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Easy Hearty Soup for the Slow Cooker ½ package of dried mixed legumes (barley, lentils, peas etc) 2 cups frozen chopped onion (or use 2 fresh, chopped) 2 cups frozen chopped carrots (or 4 fresh, chopped) 1 cup swede chopped 3-4 potatoes peeled and chopped (optional) 1 tin chopped tomatoes (optional)
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Put all of the ingredients into slow cooker or pot and fill with water three-quarters of the way to the top, then add: 3-4 stock cubes Meat of your choice (optional – but bacon, leftover chicken, ham all works well)
Seasonings:
I personally use a lot of seasonings, as I think that is what makes a good dish great. Please use the amount you feel comfortable with, you can always add more... but you can’t take it away once in there! Experiment to see what herbs and spices you like, too! 2 Tbsp. dried oregano 1 Tbsp. dried thyme 2 Tbsp garlic powder (or 3-5 fresh chopped cloves or a few tablespoons of bottled chopped or pureed garlic, to taste of course!)
Mix all of this together and add some salt and pepper. Generally it is best to let everything cook for a few hours, then season again when close to done to get the right amount of seasonings that you like. In a slow cooker, cook on high for at least 5 hours or on low for at least 8 hours – make sure you get it up to the boil, so that the barley etc can fully cook and absorb the water. Stir every few hours and make sure that you have enough water added so that the soup is able to absorb, yet not stick to the bottom. When everything is fully cooked, ladle into containers and let cool completely before putting into the fridge and/or freezer. This is also nice pureed (I just use a handheld whizzer right in the pot). The soup is lovely and thick, and full of flavour. It is always better the next day after it has had time to sit and the flavours have had time to develop.
Poetry Corner Finding FMA UK By Jane Hampshire
Today I awake with pain in my body, Knowing the day will become more and more shoddy. Tomorrow I may wake, feeling a little better than today, But this damn illness we all have will never go away. Popping the pills to take the edge off the pain, Praying that one day, I may wake up and feel sane. Family and friends who try, but can’t understand, I want to scream, please HELP and take my hand. Kids who want and need their Mum, To play ball and run around in the sun. Frustration and upset to say yet again ‘I cannot’, I'm sure they all wonder why Mum has ‘lost the plot’. From years gone by when I could run and climb trees, To being a crumpled heap with knackered flippin knees. Finding FMA, is like a dream come true, To talk and read about people who feel just as blue. Maybe now the future won’t be as bleak, As there's a place I can come to speak, speak, speak.
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