Thursday, 4 February 2016

Spoon Art

My name is Nick Lutes.

I'm from the Milwaukee area in Wisconsin. I'm in my mid thirties and have had fibromyalgia most of my life. I wasn't aware of it until about six years ago when I first started missing work because of it and also chronic fatigue syndrome and irritable bowel syndrome. By late 2010, I was unable to work at all and started seeing specialists. I was bounced around from one doctor to another because no one had a definitive answer or diagnosis for me. I felt like a guinea pig and a pin cushion because of all the tests, blood work, and trial n error with pharmaceuticals. I eventually made my way to the Mayo Clinic in Rochester, Minnesota in 2013, where I got an official diagnosis of severe fibromyalgia and moderate chronic fatigue syndrome (also known now as Systemic Exertion Intolerance Disease, or SEID), and irritable bowel syndrome. Other doctors have made mention of restless leg syndrome, Raynauds, and a few other things, but not officially diagnosed.
Since the trip to the Mayo Clinic, I've continued to research things on my own and have made progress by finding several supplements and other various treatments that have helped me find get some relief from the pain and fatigue. I'm nowhere near pain-free, but I'm not always maxed out on the pain scale.

Another revelation made at the Mayo Clinic is the fact that I've had fibromyalgia (and possibly CFS, too) since I was about 10-11 years old. I was always told to "suck it up", or the pain was downplayed as something more logical, like growing pains or sports injuries instead of chronic pain. I've had many doubters as well. I've always been one to help others and take on a lot of responsibility. I worked in the heating/air conditioning/refrigeration trade for nearly 15 years consecutively, I coached youth hockey for almost 9 years, played hockey for 20 years, and was always very busy with home repairs and renovations. Over the past year,  with the help of my very supportive fiancée Kim,  I've been able to increase my energy some and got sick of letting my skills and talents go to waste.  I decided I wanted to try and generate some income for my household again (still waiting on SSD), but since I'd be unable to hold a job with scheduled hours, I'd need to do something where I work whatever hours I want/can. I also thought making things for Spoonies (chronic illness fighters) would not only help raise awareness, but they'd be an understanding and forgiving customer base when I'm not feeling well. I make dog tags out of spoons that have inspirational things stamped on them. I also make bracelets, keychains, and several other spoonie items. I also utilize other silverware to make stainless steel sculptures like flowers, butterflies, dragonflies, and more. I make the personalized items to order, AND also make custom spoonie items and sculptures on request.

You can find me on Facebook at
I run two fibromyalgia pages on Facebook as well:
I'm on Twitter: @NickFFU & @SpoonArtNickFFU



















Parenting with chronic pain

We're nearing the end of the first week of the holidays and I've pondered a lot on the difference between term time and holiday time and the effects it has on my health. 7 years ago I would never have imagined being able to have kids, let alone be able to look after them, but with pacing, planning and good support I feel I do a good job of being the kind of mum I want to be. (If you're facing the tough decision about whether to become a parent, read my post Pregnancy and M.E)

Term time and holidays are hard work. The pain and exhaustion are relentless and without respite. Both make me anxious, in different ways. However, there is a noticeable difference in pace and enjoyment between the time in school and time out of it.

During term time with a teacher husband and two kids at school everybody has to be up and awake for a certain time and the husband and kids have to be ready. There is always work to be done, homework, deadlines, stress. There is no room for error or to push my limits as there are days when I am by myself with a baby for the majority of the day.

In the holidays we can arise at our leisure, stay in bed and in pj's as long as we want. We go out on trips, they give pleasure and are good for the soul, but they are extremely taxing physically. My limits are pushed often but with my husband at home all the time I can rest more and know all are taken care of.

I'm often asked how I cope. It's very hard to know how to answer that because sometimes I don't think I do cope, today I felt overwhelmed by looking at my three little kids and thinking of all the things I need to teach them. I told myself, as I so often have to do, that my best is good enough.

It led me on to thinking about all the parents who feel overwhelmed at the task of rearing the next generation. It seems especially hard if you're tackling a chronic illness and chronic pain as well, and so I compiled a short list of how I manage to keep going each day:

1.  Not expecting more of myself than I can give.
2. Accepting that I am going to be in a lot of pain and feel terrible. 
Instead of worrying and feeling self pity, which adds to the stress. 
3. Meditationto enable proper resting and de-stress. 
4. Eating healthy. It doesn't cure, but gives me a better chance of having health than eating junk.
5. Telling people how I feelNot for their sympathy, but to let them know my limits and how I need their help at that time.
6. PacingEnables me to do some little activity each day and not a big activity that leaves me incapacitated for days after. 

Everyone will cope in different ways and it takes time to work out what works best for you and for your family. 

Are you a parent dealing with chronic illness as well? What are some of the ways you cope? Leave a comment below. 

You can achieve through practise

I want to take up art again. 
I'm not even counting how many years it's been since I last gave it a go, but I am feeling the effects of a long time of neglect. It seems as though I will have to re-teach myself many of the skills I once had. Thankfully the Internet can make that job easier for me.

At first I felt down hearted that I'd lost another talent,  until I became conscious that I could use this situation to teach myself, and my kids a valuable life lesson.

I'm not somebody who has a gift at anything in particular. I'd call myself pretty average, and my old school reports, that my parents found, said the same. I wasn't the brightest at my grammar school, but I showed ability. With art, music, cooking etc I'm a jack of all, master of none. 

During my childhood and teenage years I settled for that, I settled for average, but I don't think we're supposed to. We all have within us the capabilities to improve and I believe that's what we're here to do. (For an inspiring story of someone who's following her dreams despite chronic illness read this post on ChloeClik Art)

I read about Heber J Grant, a latter day prophet, who mastered skills that he had little talent in, through hard work and determination. When he was boy he wasn't a great baseball player and was picked last for the baseball teams. so he saved up his money and bought himself a baseball and would practise for hours on the side of a barn. Eventually he was able to be on the winning teams for California, Colarado and Wyoming. As a youth he had a goal of being a bookkeeper. Good penmanship was expected of a bookkeeper, yet he had sloppy handwriting. Again he practised, and became so good he taught penmanship in the local school and achieved his goal of being a bookkeeper. One of his favourite sayings was That which we persist in doing becomes easier to do; not that the nature of the thing has changed, but our capacity to do has increased.”

We all have different strengths, different experiences and different opportunities, but we are expected to make the most of them. James E. Faust noted "Some of us are too content with what we may already be doing. We stand back in the “eat, drink, and be merry” mode when opportunities for growth and development abound".

Living with a chronic illness isn't what I'd call "eat, drink and be merry", however I can still use this time to my advantage by making the most of the hidden opportunities to grow and develop my talents. There are so many of you wonderful people who are already doing this and inspiring me to do the same. I need to remember to not give up when progress seems slow, but to carry on through, like the little engine saying "I think I can, I think I can, I think I can". 

Then maybe one day I'll be brave enough to share what I've produced :)

What's your story? Have you discovered a new talent after chronic illness? Have had to overcome obstacles? Or had to give up talents? Share your experiences in the comments below 


by Helen Germanos, author of 'Silent Pain. How stress and Trauma may lead to Chronic Fatigue Syndrome'. This post is an excerpt from her book she has kindly shared. Read Helen's experiences of ME/CFS and writing her book here.

At first, I thought Reiki and spiritual healing were one and the same thing. They are not, though both are a form of energy healing. Reiki was developed by Mikao Usui in the early 1900s. He devised this therapy as a form of self-healing and spiritual development. Initially he called it a ‘Method to Achieve Personal Perfection’, and it was rooted in Tendai Buddhism, which provided spiritual teachings, and Shintoism, which gave methods of working with and controlling energies. In the West, even in Japan nowadays, Reiki is considered a form of alternative therapy rather than a self-healing tool. Reiki (pronounced 'Ray-Key') is a form of energetic healing.

A Japanese word, 'Rei' means universal and 'ki' means life force or energy, which flows in and around every living thing. This energy, generally referred to as ‘chi’, 'qi' or ‘vital force’, works its way through our energy channels or meridians. It promotes healing on a physical, mental, emotional and spiritual level, restoring balance and bringing a sense of calm, clarity and wellbeing.

In Reiki, the practitioner gently lays their hands on the recipient in order to stimulate the parasympathetic nervous system (PNS). When we are asleep or in a deep state of relaxation or meditation our PNS is activated. When activated, the body enters a state of ‘rest and digest’. It is at this time that the body is able to attend to any adjustments that need to take place in order to bring it back in to a state of balance.

When we are awake, as explained in chapter 2, our sympathetic nervous system (SNS) is activated and is responsible for what is commonly referred to as our ‘fight or flight’ response. It is the SNS that is active when we feel under pressure (stressed) and remains in an active state for as long as we feel overwhelmed. If stress persists our state of health goes out of balance as our SNS is unable to stand down and allow the PNS to fully take over. For us to remain in the best state of health possible mentally, emotionally and physically the SNS and PNS need to work together.

A Reiki practitioner has been taught how to go in to a deep state of meditation, allowing energy to flow freely in and around themselves and the person they are in contact with. This is a very therapeutic experience that encourages the recipient’s body naturally to activate the PNS to restore a state of balance and harmony.

Most people find they will drift off to sleep during a Reiki session. In essence, a session can be described as the ultimate rejuvenating power nap. The Reiki therapist acts as a conduit through which universal (healing) energy flows, and the physical and subtle bodies use this to restore health and harmony.

The amazing thing is you do not need a Reiki therapist long term. Anyone can receive Reiki training, and it is very easy to learn. All it requires is practice and dedication. It is very beneficial, as it allows you to give yourself a daily energy ‘top up’ to help support your body in its healing process. I would suggest you consider doing the training yourself; it can be done over a live Reiki course or home study course. There is a link to the course I did after the bibliography section.”

Reiki (based in London); to either do the home course or find a course near you go to

Silent Pain. How Stress and Trauma may lead to Chronic Fatigue Syndrome

Thank you to Helen Germanos for sharing her inspirational story and her book 'Silent Pain. How Stress and Trauma may lead to Chronic Fatigue Syndrome' that "provide readers with a deeper understanding of what is happening to them, as well as giving them the tools and insight to embark on their own personal journey of discovery, recovery and transformation." It is the next book on my 'to read' list!
"In 2012 I collapsed with CFS and lay immobilised in bed for over 9months. Then housebound pretty much a year after that. In brief in march 2013 I came across some neurophysiological research (the polyvagal theory) which I soon realised may hold the key to understanding how and why we develop this illness. To me it incorporated all the other theories bringing it all in to perspective. As a homeopath and Reiki practitioner I also needed to understand things from an esoteric perspective....I soon realised by gaining understanding I felt self empowered and very hopeful and managed to get my life back on track. My confidence is still lagging behind but my health has returned.
Though not an author I felt I had to put pen to paper and share this - what was going to be an article, then a blog, has turned in to a short book...
Though trained in psychology and homeopathy I lay there helpless and feeling hopeless like everyone else. I've never been so frightened or alone in my life.
My book is entitled Silent Pain.  How Stress and Trauma may lead to Chronic Fatigue Syndrome. 
If you would like to take a look at what i've done you can check out my site or the publishers site which has a google preview.
It is a book about hope and self empowerment with tips and resources on tools to help overcome this illness."
Read and excerpt about Reiki from Helen's book here.

Left Foot Forward: A Hidden Source of Spoons?

Left Foot Forward: Does your body have a hidden source of spoons?
by Chris (Leeds ME Network, follow on Facebook and twitter)
I have ME and fibromyalgia and can only use any part of my body for a limited amount of time before it becomes fatigued and/or painful. Like many spoonies, I have learnt not only to pace myself by taking appropriate rests but also to increase my span of active time by switching from one activity to another. So if I have been washing dishes I may switch to reading for a while, using my brain instead of my arms.
I have recently developed a further strategy which I think may be of interest to fellow spoonies. I am normally right-handed but I have begun to develop also using my left. I have had to go very slowly at first because it takes some getting used to - and to start with it uses up a lot of brain as well as body energy as you start to develop new neural pathways. I found that it was best to do just a bit at a time and to use my left hand for a number of different activities, not just one. So I use it for washing, for typing, for brushing my teeth, for picking things up, just about all the activities of daily life, each just a bit at a time at first... Some things are easier than others, but most of them get easier the more I do them, and the more experienced I get the longer I find I can do them for.
It's best to pick a range of activities so that you use your shoulders and arms as well as your hands - and don't forget the lower part of your body too. Next time you set off walking, put your left foot forward first.
You will probably find that this strategy takes up a bit more of your energy to start with - until your mind and body get used to it. But I found that after a while I now had an extra resource to turn to - a new source of spoons if you like. When my right hand gets tired - or if I am pacing properly of course, before it gets tired - I can turn to my left and get some extra mileage.
It helps to do whatever you are doing mindfully, focussing entirely on whatever it is you are doing, to give your brain and body the best chance of learning this new skill.
Of course you have to be cautious and bear safety in mind. Don't go beyond your energy level - and don't start off by lifting a heavy kettle!
Needless to say, left handed spoonies are not excluded from this idea. You may have had teachers trying to bully you into using your right hand at school, but this may be the time to try it again - rather more gently!
I do hope you find this idea useful. Let me know how you get on. I really hope you will find it's a way of laying your hands on a few more valuable spoons...

Crystal Healing

Hey lovelies!
I'm Chrissy, and like so many readers of this wonderful site, I also suffer from ME.
My symptoms began around a decade ago, and by 2011 my health had become so bad, that I was forced to quit my job, leave university and move back in with my parents.
It was a difficult time, but through the darkness I discovered something that would become a bright and sparkly light in my life. Crystal healing!
My interest in crystals first began, when I was studying their scientific properties at university. As my knowledge of them grew, my interest in their metaphysical properties deepened, and before long I was spending much of my spare time, researching their application for healing.
It wasn’t until my health spiralled out of control however, that I truly discovered, just how powerful crystal healing can be.
Using crystals, I was able to ease my symptoms and reduce the number of medications I was taking. The improvements I began seeing in my health, is what sparked my passion for crystal healing.
So what exactly is crystal healing?
Crystal healing is a holistic therapy, in which crystals are placed on or around the body, in order to restore balance, health and vitality.
Crystals consist of atoms, which have a vibrational frequency. When brought into close proximity with the body, they then entrain the atoms within us, causing them to vibrate at the same frequency. It is this energetic change within our body, that promotes balance, vitality and healing.
Different varieties of crystals, have different vibrational frequencies, meaning that some crystals suit certain purposes better than others. With thousands of types to choose from though, there’s a crystal to suit most needs!
Crystal healing is used to treat a wide range of physical, psychological and emotional conditions, but as an ME sufferer, I find that crystal healing helps me most with:
Improving My Energy Levels
Crystals I love using: Citrine, Carnelian & Yellow Jasper.
Pain Relief
Crystals I love using: Malachite, Turquoise & Fuschite.
Easing My Insomnia
Crystals I love using: Amethyst, Celestite & Lepidolite.
Emotional Strength
Crystals I love using: Cobaltian Calcite, Green Calcite & Rose Quartz.
Becoming a Crystal Healer
My passion and enthusiasm for crystal healing led me to win a scholarship, to become a certified crystal healer. This truly fantastic opportunity allowed me to gain the skills, understanding and experience needed, to bring the benefits of crystal healing to others.
If you’re still on the fence about crystal healing I’d highly suggest picking up a few, cheap tumble-stones and giving it a try for yourself! Holding your crystal in your dominant hand, notice how it makes you feel. You may feel a strange sensation on your skin or notice other changes within you, that occur later, throughout the day.
With lots of love from the sparkly side,
Chrissy xx
Ps. Please note that crystal healing is a complementary therapy and should not replace the advice of medical professionals. :)

My Visualisation of the Well by Lorraine Stroud

So here I am again as I have been before.
There is a deep, narrow well and I am standing at the bottom of it, I am not sure but I must have lost my footing and fallen in. The floor is sodden, muddy and cold, it’s comfortless on my unsteady feet and I am looking up at the circular top, I have been here before, it’s depressingly familiar and grim.
I am wondering how I got down here again and though I am puzzled, bleary-eyed and feeling defeated, I am a little lost for words. Of course I know how I feel and I want to speak but there’s no one down here but me and myself anyway. My mind is spinning one minute and numb the next.

There is a ladder leading back up to the exit but it doesn’t start where I am stood, it’s a way up the wall above my head, it is within reach but I would need to stretch my whole body and use what little strength I have left from the fall to grab the first step.
I feel pain in my shoulders, on my back I am carrying a rucksack, it’s over laden, hefty but I am accustomed to the weight of it, it’s become part of me and my existence. In here I keep my belongings; my PMS, my depression, my illness, my  weight, my duties, my callings, my mum’s cancer, my financial insecurities and my dreams (which I safely squeeze into one of the deep side pockets so I don’t forget them, its zipped up for now.
I attempt the first step, I can reach it, touch it with my fingertips but it’s smeared with something and my hand slips, it won’t grip.
With a stiff, weary neck I stare again at the narrow tunnel up above me. I am comforted see my husband, he has seen me and comes a little way down, he wants to pull me up onto the middle steps which he says are wider and firm to hold onto. I obediently reach up for his hand but it doesn’t stretch far enough. So he leans down as far as he dare and holds out his hand, I will need to leap, I don’t have the energy. He tells me to rest a while and he’ll wait until I am ready. He is incredibly patient. To the left of him is my friend, she has also come down to talk to me, she sits thoughtfully on one of the bricks sticking out of the wall. I know she is there, her shoulders are broad, and she is holding a china mug, a homemade banana muffin (my favourite) and a handkerchief. I smile because she is my guardian angel, inspiring and motherly wise. She looks at me with those sympathetic eyes and beckons me to climb up this ladder again, she says I have done it before, she says things have been worse, I struggle to believe it.

My eyes are then drawn to the opening of the well, I can see the perfect outline of our temple, the sun is dazzling, golden not yellow, the sky is pearlescent blue, birds are sweetly twittering, my children are running around carefree giggling.
I want so much to be back up there, this is not completely impossible, this well was much deeper the  last time I was down here surely I must not have fallen that far down, and the burden on my back was heavier then too. This time I cannot seem to lift the load off my shoulders yet I am certain if I put the bag on the floor I will be light enough to jump onto that first step to freedom. The straps are just too tight right now. I gaze longingly up at the presence of love of my family and the precious sense of peace beaming down on me, and I kneel, put my head in my hands and contemplate my options......

A true reflection, by Lorraine Stroud  23 June 2014

Origami and M.E

Origami and M.E. Written by Georgina Isherwood

Following a nasty virus about six or seven years ago I have been battling with the symptoms of ME. My story is not that uncommon, in that every time I visited a GP to try and address my fatigue a plausible and convenient reason was always found. Trying to get pregnant, being pregnant, going back to work post maternity leave etc. etc. There was always a reason for my symptoms. I knew that something ‘more’ was going on, but unfortunately if a Dr doesn’t then, well, you’re pretty stuck!
It took a mental health crisis in the Spring of 2013 to get any kind of recognition. I was suffering from severe depression, and basically broke down. I couldn’t function at all. Having been working 12 hour shifts in a responsible job, around my husband’s 12 hour shifts, and trying to raise a 4 year old and 3 year old something had to give. And that something was pretty much everything for a time!
Of course back to the GPs I went. This time I was lucky. I happened to see a locum, but she was brilliant. At the time ME or CFS wasn’t mentioned - I was treated for severe depression and anxiety. I was able to access CBT locally and started to take antidepressants, albeit at a relatively low dose. I found the CBT to actually be quite useful, much more so than I had thought it would be, and have come away from the group having made a great new friend. But my problem was that although my mood and outlook was significantly improved, absolutely nothing had changed about my physical symptoms of chronic pain and tiredness. At a follow up session with one of the therapists the term CFS was finally put out there. But I was told that I had to go back to my GP to get a referral to the local clinic. By this time the locum had moved on, and so I saw my regular GP. Although she begrudgingly did the referral it was very clear that she basically didn’t really think ME/CFS, call it what you will, existed. She felt that it was wrong to “…put labels…” on sets of symptoms such as I was experiencing and just instead focus on treating each symptom. Of course that’s easier said than done, when actually to access services you need a label – if only to choose which form to fill in to refer!
Anyhow I got my referral, and I received my appointment for my initial assessment with the local CFS service. The problem was that the appointment was two days after moving over 100 miles away! So I’m here in my new home, starting the process again….

In the early days of dealing with my depression last year I found it almost impossible to concentrate on anything (I still struggle with concentration and go through these swings of zero concentration to manic ‘I’m on it’ focus). Reading was pretty impossible, I could hardly manage a paragraph at times. For some reason I felt the need to make things, be creative, and use my hands. As a youngster I had loved doing origami. So from my bed, with my laptop (where funnily enough I write this) I started to google. Magically through the power of eBay supplies arrived. Making these little paper creations suited me. On days when I couldn’t handle much focus I could make something small and simple, but on days when I was more in the zone I could tackle a more complicated project.
This has since blossomed into a little business making origami name garlands, greetings cards, holiday decorations etc. and I am now on the sewing machine expanding my making portfolio. I’m in the process of getting a ‘proper’ website up and running to support the Facebook and Twitter sites. It’s wonderful getting feedback from happy customers, and as much as they get a lovely item to adorn their homes, I get a little bit of therapy with every order.

The Menopause and M.E and other books

Written by Gina Bailey.  Many thanks to Gina for this post.

I was 28 when my life was irrevocably changed forever by the condition ME, now commonly known as Chronic Fatigue Syndrome or CFS. A case of pneumonia and bronchitis did so much more than just lay me up for a couple of weeks and, almost 17 years later, I am still not back to my pre-illness self.
I have been lucky. My symptoms are generally not too severe, (although I am in the middle of the worse relapse I have ever had, so perhaps I should be touching wood and crossing my fingers as I type) and overall I have achieved a reasonable balance to my life. Well, as much of a balance as anyone can with this condition.
For the uninitiated, ME/CFS is a condition which is still very much a mystery. They do not know for certain what causes it and therefore do not know how to cure it. There are no tests which can give a definitive diagnosis. The symptoms are extreme fatigue especially after exercise (both physical and mental), muscle pain, cognitive dysfunction (brain fog, poor concentration and memory), post exertion malaise (where the effects of an activity can leave you exhausted 12-36 hours afterwards), poor temperature control, poor sleep patterns (and sleep that leaves you un refreshed), flu-like symptoms and tender lymph nodes. Some people experience skin rashes and digestive disorders. Oh yes, did I mention complete and utter exhaustion?
Some people with this condition are so exhausted that they do not have enough energy to sit or up talk. They are confined to lying still in a darkened room, unable to tolerate noise or light. Thankfully most are only classed as mild to moderate, leaving them house or bed-bound for part of the time. I have been lucky. For most of the last 17 years, with the help of afternoon naps and days where I have been able to rest enough, I have been able to cope. I have flares which require several days or perhaps weeks of taking it really easy and relapses which have left me barely able to function. This is the typical cycle of most people with this illness.

I published my book ME Rambles and Poems in 2013. It contains my observations and thoughts about life with this illness, poems and ramblings which I hope will help people understand how my life has been changed.
Before this I also wrote a book called The Menopause and M.E (CFS) after being diagnosed with an early menopause. I was worried about how the menopause would affect my symptoms but found very little information available. After contacting the ME Association I advertised for volunteers to share their experiences with me. I was surprised at how many women’s menopause had coincided with the diagnosis of ME or CFS so I covered the basics, information about the illness and the menopause generally as well. Rather than wait and approach publishers I decided to self-publish it through Amazon print on demand and for the kindle.]=
I had more women contact me after publication which brought up more questions. It was the first factual book I had attempted and was a learning experience. The more women I spoke to the more I wanted to find answers. The results from my first survey had provided some answers but, as one review complained, were ‘inconclusive’. Some women had found the menopause had brought an improvement, others had felt much worse. The effects of the menopause seemed as varied and individual to women with ME/CFS as for those without the illness. I was frustrated. If the results were inconclusive I could not give the readers a conclusive answer, only explain the variations. My most obvious error was that I had been so focused on the menopause that I hadn’t considered the combination of ME/CFS and post-menopause. I also learnt a valuable lesson. You can’t proof-read your own work effectively and not expect mistakes, especially if you have to battle with any degree of brain fog. I decided that perhaps this project had not reached its conclusion and decided to re-write it.
I compiled a much shorter survey and asked women to contact me again. This time it was a simple tick chart looking at the comparison between the effects of the menopause and post-menopause on women’s ME/CFS symptoms. Again I asked for women to tell me their experiences. I hope to publish The Menopause, M.E (CFS) & Beyond, focusing on the combination of ME/CFS and the menopause/post-menopause, more women’s stories and what conclusions the survey’s results point towards later this year, once I have had it proof-read by someone else.
I have also published a collection of poems and a book of short stories and flash fiction, both available from Amazon as paperbacks and for the kindle. Due to my present relapse I am struggling with a lack of stamina and the dreaded brain fog but this illness does fluctuate. While I may be at a low patch now, like many other people, I am hanging on for an improvement. I have accepted that life may never be the same as pre ME but that does not mean I have given up on enjoying life when I can.

Gina has another book, "Short Stories and Flash Fiction". This weekend (14th JUNE 2014) she is having a giveaway on this book. Please visit the page and leave a review.
Follow 'The Menopause and M.E/CFS on Facebook here.

Return to Work after M.E

many thanks to Jackie from for writing this post:

Better known as Jackie, I'm 45 and live in Cornwall with my two grown-up daughters and our
menagerie of animals. My older daughter has cerebral palsy and epilepsy, and volunteers for a local
charity bookshop. My younger daughter is a Legal Secretary, she owns horses and I love helping her
with them and riding with her. Family and animals are my life. My other hobbies include reading and
films. I'm currently setting myself up as a Virtual Assistant, but more about that later.
Life has changed a lot over the last few years. In fact I would say my life now is almost
unrecognisable compared to what it was.

** You may not have all of these symptoms!**

In November 2007 when I was 39, I was working part time as a kennel/cattery assistant, and came
home one day feeling like I had the flu coming. That night the headache started. I say headache,
but it was more like a knife was being repeatedly stabbed into my skull and twisted. Aside from the
caesareans when I had my daughters, it was the most excruciating pain I have ever felt.
The doctor I saw the next day sent me home after telling me I had a migraine. By this time I was
constantly vomiting and had a very high temperature. My mum arranged to take me into hospital,
where they suspected meningitis, and I was given a lumbar puncture at 3am to confirm. I was in
hospital for 5 days.
After several months of recuperating I went back to work part time, but never felt quite right. I
carried on with life, looking after home, children and pets, and got married to my partner in July
2009, and the same month I started a new full time job. I had a social life and friends. I still felt tired
a lot of the time, and my memory was becoming a family joke – my younger daughter took full
advantage! I just put it down to being busy with life though, and never imagined it had anything to
do with the meningitis.
I loved my new job but it was quite demanding. I had a lot to learn. I started to feel even more tired
all the time, with lack of energy, terrible headaches, nausea, lessening appetite, weight loss and
insomnia. Again, at first I put this down to being busy. The memory loss became more noticeable
too, so I started visiting my doctor. I felt that at just 41 I should have been able to cope with life’s
I had a full battery of tests which all came back negative, so I was referred to a Consultant
I was diagnosed with Myalgic Encephalomyelitis (ME/CFS) in December 2009, just over 2 years after
I had meningitis. The consultant believed that it was as a result of the meningitis, gave me some
advice and a prescription. For the first month I had several different changes of medication to take
day and night, which made me feel even more terrible, so I stopped taking them altogether – not to
be advised!

My bosses at work were great to start with, and allowed me to reduce my hours to a more flexible,
manageable level. Every couple of months though I would become completely physically and
mentally exhausted and would have to be signed off sick for a week or two to recover. I didn’t realise
it at the time, but I was in the terrible boom and bust cycle, which is so damaging to the recovery or
management of ME. Having rested, I would go back to work and my normal routine, and the cycle
would start again.
My marriage ended towards the end of 2010, and I became even more unable to manage my life.
All my energy was spent at work, I would come home and sleep, have no energy for my family,
my animals, or a social life. The following September my younger daughter was a passenger in a
car accident, broke her arm severely and had to have an operation to fit metal plates. In the same
month, my mum went in hospital for a routine operation, and from then on was in & out of hospital
and I watched her decline from a very strong woman who took care of me into a mere shadow of
herself. She wasn’t the same person, I’d lost my best friend, the person I would talk to about how I
felt about Helen’s accident and her own illness.
It was at this point that I decided to take voluntary redundancy. There was no way on earth I could
cope with working any more. My own health was getting worse, and there seemed to be nothing I
could do about it. I was a mess.
My doctor referred me for Cognitive Behavioural Therapy to help me manage my ME, and then I
was also referred to an NHS-run ME Management Plan (MEMP for short) in December 2012 by my
Occupational Therapist. This was to be my turning point!
The MEMP course consisted of 7 weekly group sessions of 3 hours a time, led by an ME-specialist
occupational therapist and a psychological therapist. It focussed on an all-round approach to
accepting and managing ME. The thought of going to these sessions absolutely terrified me – me
with my social phobiaagoraphobia and all my anxieties as well as the ME!
Somehow though I managed to attend all of the sessions, and it was the best thing I could have
done! I was able to set goals, which I have since attained, and have set new goals.
One of my goals was to start some voluntary work, as part of my phased return to work. I
volunteered for a couple of months at a local animal rescue centre, but at the time found this too
physically demanding, so instead I took on the role of voluntary Advocacy Assistant (office-based) for
a local mental health charity. I’ve been there for 8 months but unfortunately they have now closed
due to lack of funding.
I’ve been looking for other voluntary or part time work, with not much success so far. I want to
work but I also need to be realistic, and the need for flexibility has become my highest priority. So I
decided to put my administrative skills to use working from home, and am in the process of setting
myself up as a Virtual Assistant – this will cut the need for tiring travelling to and from work as well
as give me the flexibility I need. I’ve been gradually working towards this goal, and plan to launch my
new business in July. Take a look at my website and let me know
what you think!
I still have to ‘pace’ myself and everything I do, if I don’t I pay the price. I find it harder to regulate
what I do now since I’ve been feeling generally better and have had two relapses; one last year after
3 or 4 months of feeling ‘great’ (relatively) and thinking I was ‘better’… Now I’ve had to admit I’m
going through one again, after a couple of months of overdoing it. I’d had the days where I could
look back and say ‘OK that’s because I did such-and-such’ and obviously I’m used to running on half
power but for the whole of this month I’ve been feeling worse and worse, permanently exhausted,
constant sore throat, headache and that feeling of flu coming, I’m forgetting things and making
mistakes, and I really hurt all over. I was diagnosed with arthritis several years ago so I don’t know
whether any of this is to do with that taking a turn for the worse, I don’t like to blame everything on
ME.. So I have a doctor’s appointment later in the week to see what’s what.
In my opinion, I don’t think you ever ‘get better’ from ME, you just learn to accept and manage it.
In the meantime, I take each day as it comes, I’m thankful for what I have and try to enjoy my life. It
can be really difficult at times to stay positive - but that’s the key! Tomorrow is another day :)

Much Maligned and Misunderstood: ME and Stress

This article 'Much Maligned and Misunderstood: ME and Stress' is written by Jenny from a new ME/CFS/Fibromyalgia blog offering free/cheap tips and advice for cash-strapped spoonies.

I have had fluctuating ME/CFS/Fibromyalgia since coming down with Glandular Fever in January 1998. A few years ago I’d react defensively if someone suggested I wasn’t getting better because I was stressed. Most of you can probably understand the background to this – ME (although no longer dismissed as Yuppie Flu) can be easily sidelined into Cognitive Behaviour Therapy, inferring getting better is a case of mind over matter. Our associations with this are that it is aggravating and insulting for people with a crippling neurological/immunological/endocrine condition that is under researched.
However, my defensiveness was more puzzling because at university I had studied Health Psychology and PsychoNeuroImmunology (PNI) and knew that stress can aggravate or enable a wide range of conditions which no-one would suggest are purely psychological. Since my more recent relapse I have taken this into account and readdressed my approach to stress and my ME. I am now taking a provisional perspective that at some point there will be a conventional pharmaceutical treatment for ME (or ME subgroups as I think it is unlikely that we all have the same physical illness). However, for the meantime  lifting as many stressors as possible from my body is likely to enable my body to use more resources to heal itself. I have also been listening to other people’s recovery stories and if there is one overriding theme I’d say it was removing stressors (see the Optimum Health Clinic’s Freedom From ME a film about cfs and Dan Neuffer’s site CFS unravelled if you want to hear some encouraging recovery stories).

By the way, on my site ‘Stress’ is used in a very general sense to include the pressures put on our bodies that exceed our ability to cope with them. For example, viruses, poor diet, emotional strain, work demands, anxious thoughts, low blood sugar, smelly paint, pollution. This is not necessarily the same as ‘suffering from stress’ in a medical sense. Also, I don’t think that eliminating stress is a cure in itself.
I have been trying to take away stressors from all angles: eating more organic food, taking supplements, using homemade shampoo, avoiding stressful situations, meditating, using self hypnosis, trying to promote restful sleep etc. This voyage has been challenging as there are a lot of nutty sounding cure-alls on the internet (see my post on open-minded, intelligent curiosity towards ME healing) but I feel like I’m learning a lot about alternative medicine and different traditions.
For those who remain unconvinced of alternative and integrative approaches for ME/CFS/Fibromyalgia, it may be helpful to take the emotive element out by considering other health conditions and recent research*:

  • Mindfulness-based stress reduction therapy (MBSR)promotes a more rapid recovery of functional T cells capable of being activated by a mitogen with the Th1 phenotype in cancer survivors. In English: Mindfulness meditation helps immune recovery after cancer(Lengacher et al, 2013)
  • MBSR training resulted in a significantly smaller post-stress inflammatory response compared to the control condition, despite equivalent levels of stress hormones. In English: learning Mindfulness meditation skills can reduce inflammation after stressful events (Rosenkranz et al, 2013). I think they are saying that this is relevant to an autoimmune response but I have trouble reading.
  • Yoga reduces fatigue and proinflammatory cytokines(IL-6, TNF-α,  IL-1β) in cancer survivors (Kiecolt-Glaser and others, 2014)

Pic link:

My blog has only been going for a month but I have lots of ideas I’d like to include under the general theme of cheap ways to reduce stress and get better faster. So far I have written about aromatherapy;  yoga nidra; and over doing it writing a blog! I’ve also started a series about improving sleep(lack of quality sleep is usually a major psychological and physiological stressor for people with ME/CFS).
 I'm keen to share free (or almost free) resources because most of us have found ME to be financially devastating on top of all the physical and emotional pressures. I think the site will also keep me focused on finding new approaches to help my recovery. It feels like a purposeful, productive thing to do and that is helping me emotionally. I am also enjoying the Twitter community around ME/CFS/Spoonie blogs (I’m @TweetTipsforME).
My general story is on my website, but in more detail:
I had a severe relapse two years ago. This was very alarming, particularly because I was worse than I had ever been, and for the last 11 years I had worked part-time successfully. I didn't feel like the traditional pacing advice I'd had on the NHS would be enough to get me over this major blip. However, one of my new symptoms was like an acquired dyslexia - it was hard to follow words across the page. This made it really tricky to understand information on the internet (please let me know if you think I’ve misread any of the info I link to*). I found this particularly distressing because I am someone who likes to research things thoroughly.
My partner found information on the Optimum Health Clinic ( and I signed up for their Secrets to Recovery online video course ( £97). This was really good for my situation because the video and mp3 player content didn't require any reading. I learnt a lot from this and also started their nutrition programme. However, having lost my job we couldn't afford to pay for the psychology side of the treatment (the nutritional supplements are expensive but helpful). As my brainfog cleared a bit I supplemented what I'd learnt on Secrets through various free sound and video relaxation resources online which I'm sharing on . I've also been learning about things like aromatherapy.
I aim to write quite briefly on my site and to include sound and video resources to make it accessible for other people having difficulty reading (eventually including audio versions of posts – tips on this are very welcome). My reading is improving, but I still find it hard to access long, chatty blog posts and comments. It would be great to hear what you think of the blog in the comments section or on Twitter.

Contact Jenny: