Getting to grips with fibromyalgia

9 May
Mum and guide high up in the Atlas Mountains

Mum and guide high up in the Atlas Mountains

The term multi-tasking was invented for my Mum. Granted it’s a slow start in the morning, but after a couple of mugs of Yorkshire Tea she’s like a whirling dervish. An average morning might involve mowing the lawn, throwing a casserole in the oven, doing a pile of ironing and checking her emails . Nothing that remarkable you might think for someone who has raised four kids and run a successful business – except she is in constant pain with a condition known as fibromyalgia.

Fibromyalgia is the term for a group of symptoms including intense chronic muscle pain, fatigue, headaches, sleeping problems, joint pain, numbness and tingling, restlessness in the legs (particularly at night), irritable bowel syndrome, problems with memory and concentration, sensitivity to cold, bladder complications, depression and a swelling sensation of the hands. With fibromyalgia the soft muscles and tissues around the joints hurt, as opposed to arthritis, which is caused by the immune system attacking the joints. The pain is inconsistent – you may hurt in one place one day and not the next. The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. Most people with fibromyalgia have sleep problems – either struggling to get to sleep, or not getting the deep restorative sleep needed.

The cause of fibromyalgia isn’t known, but it’s almost certainly something to do with disturbed pain messages from the brain. There isn’t a cure, or a one size fits all treatment for fibromyalgia, but there are a range of medications available which can alleviate the main symptoms of muscle pain, anxiety and sleeplessness. Like many long-term conditions, non medical approaches can provide relief such as warm baths, or applying cold packs to ease areas of pain, gentle exercise and complementary therapies.

I’m rather ashamed to admit that I’ve never really looked into fibromyalgia until now; not least because Mum always seemed to have it under control and never complained about the problem. This week I managed to sit her down for an hour in her busy schedule and found out about how it has affected her life…

Ten years ago, when the symptoms of fibromyalgia first reared their ugly head, the prospect of living an active and fulfilling life in her mid 60’s was hanging in the balance. Even sitting in the same position for too long was unbearable and activities such as knitting and playing the guitar were too painful. Despite being very understanding our family GP was flummoxed. Pain killers had little effect and a brief period on a drug (now prescribed for epilepsy) rendered her unable to string a sentence together.

It wasn’t ‘til she moved to France, a year later, that the term fibromyalgia was mooted and thanks to a referral to a rheumatologist who undertook a battery of tests – MRI scans, blood tests, allergies – the condition was diagnosed. By this stage she wasn’t driving as the pain in her shins was just too painful to control the pedals and she was often in tears due to the pain in her lower back and shoulders. The fear of ending up in a wheelchair was also making her even more anxious and depressed.

An aggressive cocktail of eight drugs was prescribed to tackle her symptoms and after three months the dosage was reduced. Since then she has continued to take three medications to relax the painful muscles, reduce anxiety and aid a restful sleep.  She also knows to listen to her body and moderate her activity accordingly. She’s learnt the hard way that overdoing things will result in excruciating pain the next day, and forgetting to take medication is just not an option. She swears by swimming, gentle walking and not doing a repetitive activity for more than 20 minutes – hence the multi tasking.

Crucially, a positive attitude has helped her get through some really tough days and she claims that she’s never let fibromyalgia stop her doing anything (although I’ve seen her crash and burn a few times). To her credit, since being diagnosed she’s scaled the Atlas mountains in Morocco, sewn an intricate lace wedding dress and sang lead vocals and played guitar in a rock band. My Mum’s just far too busy to let fibromyalgia get in the way of life! Which brings to mind the hilarious French and Saunders sketch of the two ladies bemoaning the fact that a concerned relative called an ambulance when they were unconscious. On a more serious note, I wasn’t at all surprised to hear that people with A1 (high achieving) personalities are more prone to fibromyalgia than the rest of us mere mortals.

The bigger picture is that fibromyalgia affects nearly 1 in 20 people worldwide. In England and Wales, there could be up to 1.76 million adults with the condition.

Anecdotally at least, it seems that awareness of fibromyalgia in primary care was pretty poor a decade ago, but my Mum concedes that as a temporary resident in the UK in recent years, doctors have been more ‘au fait’ with the condition and the medication she is taking.

My fear is that recognition of fibromyalgia by the medical profession is still patchy. I recently spoke to a man whose wife was convinced she had fibromyalgia, but her GP refused to believe otherwise and continued to treat her for depression. She may well have been suffering from depression of course, but which came first, the chicken or the egg?

Fibromyalgia Association UK are doing some fantastic work providing information and support networks for people with fibromyalgia and anyone who feels their GP needs educating can request that a medical information booklet is despatched to them.

For my part, I hope that my Mum’s story provides solace to anyone who’s just been diagnosed with fibromyalgia, or indeed any long-term condition. So please do share this post with anyone who might be interested and let me know if you’ve had a similar experience. I’d love to hear from you.

Related links:

NHS Choices – Fibromyalgia

Dr Kevin White, MD, PhD, author of Breaking Thru the Fibro Fog

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A gentle reminder

3 May

baby bracelet

Last week, my former landlady sent me my daughter’s hospital bracelet. The bracelet must have fallen out of the shoe-box stuffed with baby mementoes as they were hastily packed away ready for the removal van.

I was so touched by this gesture, I immediately emailed her to thank her for her trouble. It would have been so easy for her to simply throw away such a small and apparently, trivial item (particularly as I had left the country), but instead, she reflected on what this small plastic band, bearing my daughter’s name and date of birth, might mean to me, and took the time and effort to package it and sent it on.

Every day is filled with these small, fleeting opportunities of goodwill which have the power to restore someone’s faith in human nature, help someone put their problems in perspective, or let someone know that they are appreciated. Sadly, we are often too busy and pre-occupied with our endless ‘to do’ lists and own needs to act with kindness and compassion to others. This thing is, it’s amazing how a small gesture such as sending a greeting card, or stopping to pass the time with a neighbour can boost your own happiness and wellbeing too.

Simply smiling, not only makes those around you happier but has been proven to release endorphins – chemicals which help reduce stress.

Here in France the word for kind is ‘gentil‘ and their ‘gentilhomme’ was originally synonymous with ‘nobleman’, this is, a man of wealth and status. As with our ‘gentleman’ it now describes any man of good, courteous conduct.  Today, ‘gentle’ behaviour is less about etiquette, but is still essentially about acknowledging others, being courteous and putting aside your own wants and needs for a moment.

Far from being a paragon of virtue myself, I have a caustic tongue to rival Anne Robinson when I’m riled and admit to a streak of schadenfreude, especially on ski-ing holidays despite being a novice myself (admit it, unless there’s any real damage it’s pretty hilarious watching people fall over). As such, I know that there are frequent times when I should, or could, have acted more ‘gently’ towards others – especially now that I need to show a good example to my DD (‘darling daughter’ to the uninitiated). I have no doubt that every ungenerous word or sarcastic eyebrow raised is being processed by that cute little brain, only to be regurgitated, usually at an inappropriate moment.

In my defence, teaching the importance of kindness to a toddler can be a challenge, especially once your little cherub begins to realise that they have desires and ideas of their own. Deprive him/ her of that extra biscuit and you are branded a ‘meanie’, and why on earth would any sane two year old want to relinquish the biggest, noisiest percussion instrument in the playgroup when they‘re having so much fun? Also, how can you teach your two year old to be forgiving, when some great oik twice their size pushes them for no apparent reason other than to get a reaction? On these occasions its okay to say ‘stop that’ very loudly , tell a grown up or walk away – bad behaviour should never be tolerated.

The general principal is this: life can be unfair, and bullies do need putting in their place, but on the whole, you’ll not only rub along more easily with others if you’re kind, life will just feel better if you’re polite, treat people the way you expect to be treated, and act without prejudice. Above all, the joy and gratitude generated by seemingly small acts of kindness should never be underestimated – as I can testify by the surprise return of my precious little plastic bracelet.

Bringing library closures to book

25 Apr

reading

My heart sank this week to learn of the demise of the local library – with more than 200 libraries up and down the country closed last year due to Councils’ spending cuts, 170 so called community-run libraries being kept afloat thanks to unpaid volunteers, and hundreds more facing closure.

Since arriving in Brittany a couple of weeks ago, myself and the little one have already acquainted ourselves with the excellent local library here (albeit for a nominal fee). Reading the likes of Le Petit Chaperon Rouge (Little Red Riding Hood) and Le Lapin (The Rabbit) are not only quenching my daughter’s thirst for a story, but improving both our French.

Our regular library visits (which date back to her very first months) by no means precludes a burgeoning book collection of her own, but the benefits of learning about borrowing books from a library extends beyond the cost savings. Flicking erratically through the array of titles (invariably starring an animal as the main protagonist), and sitting on her own to ‘read’, while I peruse loftier titles (ahem), is particularly rewarding for mademoiselle. Even returning the books is teaching her a valuable lesson about looking after borrowed items and sharing with other children. Not forgetting the social aspect of meeting and greeting other library users and staff.

My personal passion for libraries is relatively recent, admittedly. This is perhaps, in part, due to the fact that as a child books were readily available in our house, and in my teenage years, my passion for reading was fuelled by my grandmother – a voracious reader, with whom I could freely discuss not only books, but music, fashion and my latest crush.

As an English Literature undergraduate in the early ‘90s I developed a love/hate relationship with my university library – not unlike the haunted library in Ghostbusters, mysteriously catalogued and with an eerie quietness which made me want to blurt out some profanity, Tourette’s style, to break the uncomfortable silence. Where the student grant allowed, novels, plays and poetry would be purchased, untouched by human hand, from Blackwell’s and devoured back at my digs. Countless afternoons spent curled up on my ramshackle sofa, never far from a boiling kettle and the biscuit tin; far more conducive to literary digestion than sitting straight-backed and silent at a rigid desk.

Aside from a brief encounter with an academic library in the name of professional development, I pretty much managed to put the sweaty-palmed experience of libraries behind me until 2010. I didn’t give up reading– I just preferred to pick up books on Amazon, or on a whim in the airport WH Smiths.

The combination of tightened purse strings and an expanding belly forced me to venture tentatively into the local library to swot up on baby-rearing techniques. Of course I consulted the internet too, but physical books by recognised authors, with their forewords and friendly pictures, seemed to provide greater comfort and reassurance in light of the challenges ahead. Greeted by a cheery face and intuitively displayed books, I could easily find everything from romantic fiction, to travel books and indeed, baby manuals – with comfortable seating to boot! (In actual fact, mother’s instinct was never far wrong, but Tracy Hogg’s Secrets of the Baby Whisperer provided a good foundation).

Later, with a pram in tow, the local library had even greater appeal, – with nursery rhyme CDs, ‘bounce and rhyme’ classes and information about local playgroups and activities.

Library visits and our nightly reading sessions continue to be met with gusto by my daughter and I am relieved that I overcame my library phobia in good time for her to enjoy this particular habit.

I also count my own blessings for having been given an early introduction to reading and books and strongly support efforts to protect our local libraries, which are such an important gateway to reading and ergo, life chances, for many young people who may not be able to access books so readily at home.

How challenging misconceptions could save lives

19 Apr

79082-20130419 jab image

They said, “If you teazle
A sneezle
Or wheezle,
A measle
May easily grow.
But humour or pleazle
The wheezle
Or sneezle,
The measle
Will certainly go.”

An extract from ‘Sneezles’ by A A Milne

A A Milne died in 1956, seven years before the introduction of the measles vaccination. In 1988 the MMR (measles, mumps and rubella) vaccine was introduced, to protect against three significant childhood diseases in a single combined vaccination. A subsequent booster jab was found to provide nearly 100% protection.

A decade later the MMR vaccine came under close scrutiny with the publication of the findings of a small study of 12 children, which revealed a potential link between the MMR vaccination and autism and bowel disorders. The scientist responsible for this controversial research, Dr Andrew Wakefield, published an article in The Lancet recommending that the MMR vaccines be administered separately to avoid any risk.  With a group of impassioned parents of autistic children championing his theory, the story could not fail to make the headlines.

Since then, Wakefield’s claims have been discredited by subsequent research studies, but the impact of his work on the public’s consciousness has been far reaching. Only this week, the news of a measles epidemic in south Wales affecting over 750 children (those aged between 10-18 worst hit), has been top of the health news agenda.

Although Wakefield’s credibility has subsequently fallen on stony ground, the Welsh outbreak reminds us that efforts to allay people’s concerns about MMR have been insufficient.

For many parents, who perhaps recalled the thalidomide scandal, the persuasive testimonials (backed by a report in a serious academic journal), were sufficient to convince them that the MMR vaccine posed a greater risk, than protection for their offspring. In reality an astonishing 16 youngsters died of measles the year before MMR was introduced.

The NICE target is for 95% of the population to be immunised to gain ‘herd protection’, but the measles statistics speak for themselves, with over 2000 cases last year – four times the number of cases than in 1998, when Wakefield’s findings were first published.

In Wales the finger of blame is wagging at the South Wales Evening Post for reporting the concerns of parents back in the late ‘90s. But this does rather smack of shooting the messenger and potentially alienates an important ally in the war against inoculation avoidance that needs to be fought.

A programme of emergency clinics is now underway in south Wales, but in addition, it is now expedient to address the misconceptions about the risks of the combined MMR vaccine, as well as general ignorance and apathy towards childhood inoculations on a national scale.

In short, those delivering public health information (now under local authority control), have a responsibility to get the vaccination gospel out to the masses. This will be no mean feat: Dr Google cuts more sway with your average Joe Public than their local GP. Add into the equation differences between rural and urban populations, transient, and multi ethnic communities and you begin to comprehend the complexity of the PR task in hand – this isn’t going to be as simple as putting out a Department of Health press release

As with any successful communications campaign, propaganda alone will not cut the mustard. A thorough understanding of audience and current perceptions, effective communications channels and influencers needs to be mapped out. Consistent messaging needs to be disseminated across a comprehensive network of health visitors, nurseries, childminders and schools to ensure that no-one slips through the net.

Crucially, the healthcare professionals interacting with parents every day need to be ‘on message’. How many organisations forget to adequately engage their staff before going ‘public’?

Competing priorities, budgets and bureaucracy will have to be negotiated to get the right resources in place; but doing nothing may result in the newspapers having a fresh headline – the death of a child who could have been protected with a simple jab.

Photo courtesy of David Castillo Dominici. FreeDigitalPhotos.net

Letting go to let in new possibilities

19 Apr

crochet web image

I’m about to begin a new chapter in my life. It’s time to step off the treadmill. A temporary hiatus in Brittany will allow me time to take stock and investigate how to set myself up as a freelance PR consultant and writer. It will also give me a precious opportunity to spend more time with my two year old daughter.

Surrounded by empty packing boxes a few days before the removal van is due, I survey the task in hand. I am struck by how much ’stuff’ I have accumulated, not only in the last year (since my separation), but in the last 20 years, when I first flew the nest.

As I contemplate this uncomfortable truth, I spy a green and blue striped vase, a relic from university days, staring pleadingly at me from the corner of the room. But its not just a sad old chipped vase, which has overstayed its welcome, there is a plethora of much less functional items filling up drawers and cluttering shelves.

Of course many of these odds and ends have a sentimental, if not functional value: old photographs of loved ones (taken before the advent of digital cameras); a miniature reproduction Christ the Redeemer (dear Rio de Janeiro, how you stole my heart); and ‘yellow bunny’, who has ‘stood’ by me, literally, for as long as I can remember.

My argument being that one man’s junk may be another man’s precious memory, point of reference, or inspiration.

I tentatively open up cupboards and peer under beds to discover that this theory has its limits.  I am in denial about much of my possessions such as clothes that no longer fit or are suitable for a 40 year old mother, or the fantastical notion that I will become a dab hand at crafting. And please tell me I’m not alone in getting only as far as actually watching the pilates DVD from the comfort of my sofa – admiring the tutor’s rippling abdominals and the stunning backdrop?

But there are bigger ‘skeletons’ in the closet. The wedding dress, stuffed uncomfortably into a small box, a reminder of my ill-fated union. And the moses basket, now functioning as an oversized day-bed for my baby’s doll. But its not just letting go of the crib, is it? It’s accepting that my baby-making days are dwindling.

Biting the bullet, I quickly snap and upload photos of the dress and crib onto Ebay. Bags of trashy novels and baby toys are bundled into carrier bags chartered for a charity shop. Now that really wasn’t so hard was it? Energised, I start throwing away shoes – yes shoes, for heaven’s sake!

The decluttering is far from complete, but at least I’ve made a start. The need to reduce my physical baggage forced me to address the mental baggage I was still carrying – of shattered dreams from a previous chapter in my life. So as well as reducing removal costs, my mental ‘decluttering’ has created the space for new possibilities that may be just round the corner…

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