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A Day with a Son with M.E.

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“I helped my 10 year old son to the bathroom as the crippling pain rippled through his leaded body. His lips were dry and cracked even though he had drank an ocean of water that day. His complexion had that grey alabaster look, with those deep panda markings that have become my nemesis.

As I helped him back to his room, he explains how embarrassed he feels about it all and I gently chastise him that things could be a lot worse. I quickly think of some comic element to lighten the load, and tell him of anecdotes of times I have helped his big brother and sister out. We have to take every movement real slow as he is dizzy and feeling sick. He sits at the end of the bed while I arrange the special pillow so that his head is elevated, and his sore neck is supported. I put eardrops in, to sooth his sore ears and Olbas Oil to clear his congested sinuses. There is nothing I have found that will help with his sore throat.

He would normally ask me to leave, but he is too weak and in too much pain to do so. I lay next to my son until the temperature in his legs has warmed. His body rigid with pain, I try not to think of the future because no one can say what will happen to my 10 year old son. There has been very little research done on the pathway of this disease, even though 25,000 children suffer in this way every day in England.

He has not been to school for months and he is desperately missing every aspect of life. He is jailed in our home by a dysfunctional body, crippled by M.E. Disbelieved by most medical staff not taught how to treat this long standing illness and portrayed as malingerer by politicians, with the threat of the Education Services and Social Services never very far away from my thoughts. This worry stagnates my concerns into despair. As a mother you are blamed from every angle, even by your own self. I haven’t slept properly for a couple of years now, and everyone keeps telling me to look after myself, but how do you do that, when you don’t feel safe and uncertain about the future? Which part of my life is on solid ground?

I try not to think back to the life we had, the fun of movement the joy of being a family so rudely taken from us. Just to jump in the car and go visit, have friends and family around, have a life. I have to pull from the here and now to gain the strength to make a buoyant life. There are many people out there with all sorts of illnesses and disabilities. I turn on the shower and cry it out.

I dress before he wakes and organise a day where he does not have to think. I worry about which foods his tummy will accept. I don’t put on the perfume I love to wear or deodorant because this will set off the migraine like headache, which will add to his already painful head. I cut out the Christmas decorations in the hope he will feel well enough to help. If not, I will quietly get on with it while we watch a film. I will pick a film we have seen a thousand times before, because this is all he will be able to do today. Watching a well viewed film is classed as an activity, unbelievable isn’t it?

He wants to go shopping and we have a month before Christmas. He wants to buy me two presents at the shops. Apparently I’m worth two! We have looked on line but he is determined to go out and he has even relented to using a wheelchair. We don’t have a blue badge to make our lives easier which is a shame, but we will manage. In my mind I think of taking him to eat somewhere special, of the music they put on for Christmas, the decorations, the lights, and life. For just a little while we could live. The payback of Post Exertional Malaise will be worth it? Wish us luck x”

To donate to our Movember Awareness please text MFME77 £1-£5 or £10 to 70070 or via www.justgiving.com/movember4me/

Thank you for your support.

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There is a section on paediatric myalgic encephalomyelitis in the International Consensus Primer for Medical Practitioners. Hard copies are available from Invest in ME charity as official UK distributors and it may be read online here – http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

Hard Copies available from Invest in ME Charity
Hard Copies available from Invest in ME Charity

About Let’s Do It for ME Movember Awareness of men’s health – https://ldifme.org/nomenbar-for-m-e/

Prince Among Men for Invest in ME Research

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Glen Prince Does Movember for Invest in ME Research
Glen Prince Does Movember for
Invest in ME Research

Glen Prince wrote:

“I decided to do Movember properly this year, for charity rather than just for fun. I’m asking my lovely friends to please donate to research into ME, a condition much overlooked and in some countries denied….but the tide is turning little by little. Please text a donation using the code MFME77 followed by the amount
(£1-£5…or £10) to 70070. Thank you.”

The text donations add to the total raised on this JustGiving – www.justgiving.com/movember4me

Big thanks to Glen and everyone supporting Invest in ME Research!

See our Movember intro here – https://ldifme.org/nomenbar-for-m-e/

Nature Photocards by Jane Hurst

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Hi,
 
This is Pack 1 and Pack 2 of our popular photocards. All photos were taken by friends and family, all of whom who either have ME or have a family member who has it. The cards are printed on quality card and make perfect gifts. They are sold in aid of Invest In ME and The 25% ME Group.

Pack 1 and Pack 2 on display
Pack 1 and Pack 2 on display

 

Nature Photocards Pack 1


 

Nature Photocards Pack 2

View the details for each pack on Facebook here – Pack 1, Pack 2.

 
Cost is £3.99 per pack or £1.25 each. Postage is 80p per pack (2-3 packs: £1.60.) You can pay by Paypal or cheque, so if you’d like to order please just PM me on Facebook.
 
ME is recognised by the World Health Organisation as a serious neurological illness. It affects around 240,000 people in the UK alone. ME is a potentially severe, disabling and chronic condition affecting the immune and central nervous system, and varies greatly in its severity and duration. Symptoms include incapacitating exhaustion after even the slightest activity together with malaise, nausea, disturbances of major body systems: guts, bladder, heart, respiratory and balance – and painful muscles and joints, severe neuropathic pain & light and noise intolerance. V severely affected sufferers can experience paralysis & some are even too ill to feed themselves. We hope if more research is carried out, a cure or at least an effective treatment can be found for this devastating illness.
 
Thanks 🙂
Jane Hurst

M.E., MYSELF AND I…. by Barnaby Eaton-Jones

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Hello! My name’s Barnaby Eaton-Jones, but that’s my problem.

I’ve had M.E. since 1991, so that means I’ve been unwell for longer than I’ve been well. This, as you may imagine, is described by me as ‘a bit of an arse’. Which is somewhat of an understatement.

So, picture the scene – a young, lithe, handsome man, with the intellect of a Greek philosopher and the physique of a Greek God. Then, look just behind him and there’s me pulling faces behind his back. Yes, I don’t think I took anything seriously until this nasty illness grabbed me by the lapels and pinned me up against a wall, like a school bully. I had just finished my GCSE’s and was excited at the prospect of Sixth Form (no uniform, woo-hoo!) and A-levels. By 1992, when I sat my exams, I was lethargic, suffering from severe anxiety brought on by not knowing why I was so run down, and had gone from being an energetic Tigger to a shuffling Eeyore. It was all a big Pooh. If you’ll pardon the analogy.

My Mum remembers the moment when she realised quite how unwell I was, when she argued that my 17-year old self should pull myself together a bit and get to the bus-stop and catch my morning bus to my Saturday job. Half an hour later, my Dad drove off to do some work and he saw me fast asleep in the bus-stop. Some people might have called that ‘lazy’ but luckily I had parents who were incredibly supportive, as well as a sister who took time off school and then work to regularly be with me back when I struggled to do more than lie in a bed or on a sofa.

But, you know, I paint this picture with the full knowledge that there are many who are so much worse of than I am. I regained some sort of normality and, though I have never recovered, I’ve managed to push myself to my limits to do things that ‘normal’ people would take for granted. So, I’m always aware how ‘lucky’ I am.

I would often channel any spare energy I had into creative outputs, two of which I’d just like to boast about now. I mean ‘boast’ in the most modest of terms as both of them have evolved into something that – if you fancy buying one or the other – benefits the charity Invest In ME. The first is the most recent. It’s a book of black humour/horror, in the style of the adult Roald Dahl, which many authors have kindly contributed to for free. If your brain is wired towards the darker side of life, then ‘Tales Of The Female Perspective’ might be the perfect anthology for you. You can grab a copy from www.chinbeardbooks.com. Whereas the second thing I’d just like to cheekily advertise (and I used the word ‘advertise’ in the Invest In ME sense, as I don’t make a penny off either of these – all the money goes to the charity) is the musical play I wrote way back when I was trying to fathom out why this illness was so misunderstood and misrepresented, ‘Running To Stand Still’. It’s a sort of compressed morality tale with a bit of humour and a lot of original songs. I wanted to show how this illness affected those around the sufferer as much as it affected (and often changed) the sufferer. It toured schools and colleges, to try and raise awareness, before being the very first play ever to be broadcast on BBC Radio Gloucestershire and won Best Original Play in a county Theatre Festival. On the twentieth anniversary of the first performance, I released a new adaptation on CD, with a new and professional cast, which is something you can still buy and is – again – in aid of Invest In ME. You can grab a copy from the Shop section of www.barnabyeatonjones.com.

So, there we go. That’s where I am. Not recovered but coping as best as I can. I’ve made friends with sufferers who are worse than me and better than I am. It’s been a long, arduous road and I’m still walking it as best I can. The recent advancements in research and the sloooow realisation by governments, scientists and doctors that this is a real illness is encouraging, though the media are always quick to label us all as lazy layabouts that can’t pull ourselves together or offer some miracle story of a person curing themselves by running marathons or bungee jumping or the power of prayer. Sadly, this is where the grey area in the illness takes hold, as those people surely never had this in the first place. There’s a difference between post-viral fatigue and the horrific array of symptoms that go far behind that with M.E. – so, their struggle was just as real and horrific but their bodies have managed to recover. Sadly, M.E. patients rarely get that release and it’s a life sentence.

So, do your bit. Fight the cause. Raise awareness. Donate to research. Those that are too unwell to be heard use their energy to be heard, which is a horrible irony but – in this day and age – is the only way to stand up and be counted. We’re all together. We are legion. We are the foot soldiers and, in the future, we’ll be respected for the fight we fought and, hopefully, the war will be won. One day.

Barnaby Eaton-Jones
Aged 42
A Walking Chinbeard

*HAPPY BIRTHDAY BARNABY FROM YOUR FRIENDS AT LET’S DO IT FOR ME!*
 

‘Tales of the Female Perspective’ –
http://www.chinbeardbooks.com/charity-beard

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Tales of the Female Perspective also features on our fundraising bookshelf here.

 

‘Running To Stand Still’ –
http://www.barnabyeatonjones.com/apps/webstore/

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Our Running To Stand Still page here. RTSS can also be found in the Music and Audio section of our fundraising shop here.

 

Let’s Do It for ME Movember Awareness of Men’s Health –
https://ldifme.org/nomenbar-for-m-e/

Movember Monkman Style

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Not to be outdone by guys growing a mo for Movember, Rachel Monkman shaved her hair for Invest in ME. Husband Steven Monkman had written:
My wife is raising money and awareness for Invest in ME (IiME) as she has been ill with myalgic encephalomyelitis for eight years nearly and she says: without the support of my husband, children, and my mum and the friends on the Invest in ME facebook group I may have given in. I have decided to do something a little mad like shave my hair as it’s really the only thing I can do. I would love to run a marathon or climb a mountain but unfortunately I’m too ill to do anything like that. Movember is when men grow beards and then shave them off so I shall be shaving my hair off so please dig deep and give generously as we need every single penny you can give. Many thanks to IiME for the fantastic work you’re all doing on the research, kind regards and thanks for donating. Thanks for taking the time to visit my JustGiving page – https://www.justgiving.com/Rachels-headshave

Rachel tells her M.E. story ..

In February 2008 age 28 I started with a case of a cold just before we were due to go away on holiday. The first few days I spent fully clothed aching from head to toe and felt dreadful. I managed to get through the holiday and felt slightly better when the warmth of the sun was on my skin but the aches just wouldn’t shift. Once home all the symptoms came back with a vengeance and I went to see the GP who dismissed it as a virus, rest up and have fluids was advice so I did. I felt like every part of my body was on fire with sweats one minute and the next I would be freezing cold and shivering but clammy and cold to the touch. Every single bone in my body was hurting so much I knew that this wasn’t just a virus.

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After many fob offs from my GP and six months of restless nights and struggling with pain, my job suffering as a consequence of the symptoms arising from whatever was happening to my body, I took my mum to the GPs and begged them again to do something as I couldn’t cope with what was going on with my body, restless sleeps and feeling like I hadn’t slept at all and days at work where I couldn’t find words to describe the simplest of things, lots of nerve pain, brain fog, lack of concentration, sensitivity to noise and light, sore throat, swollen glands, neck shoulder and back pain. I was then given a blood work up, all came back clear except vitamin D was low. I was given some chews to take and sent on my way. After six weeks I went back and begged for help, I wasn’t getting better I was getting worse. The GP decided I had fibromyalgia and that exercise would help me. I had two children aged 9 and 6 and worked school hours and ran a home, never stopping from getting up to going to bed but tried to incorporate some jogging in-between but I just didn’t have the energy. Two years passed with me working three weeks and then been off sick for three months over and over for these two years, by which time I was a wreck. I had to give up my job, spent most days in bed or on the sofa, had barely any energy to do anything but breathe. I would do the school run and climb back into bed until pick up time.

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I started to see a new GP in 2010 who read my notes and actually listened to me. She decided to send me for an MRI as she thought it was either MS or ME. The MRI came back clear and I was referred to a CFS/ME clinic by the neurologist. After a two hour appointment with them and examinations, a primary diagnosis of ME was given with secondary fibromyalgia. I was asked which was worse, fatigue or pain, I couldn’t say that one was worse than the other as I truly felt like I could die I felt so ill. I was told I would have ten sessions with a occupational therapist, three on my own and then the rest with a group talking about coping strategies. I managed one appointment with the OT and after that I couldn’t get out of bed, let alone travel 54 miles round trip for nine more weeks and was given funding for home visits. The OT came out to me once a month using what I know now as the pacing technique. I was struggling to sit up or eat meals let alone do anything else so never progressed with them. The GP I’ve had for the last seven years has tried to help keep me as comfortable as possible and although she couldn’t do much she always made sure I knew that she believed me.

Rachel Monkman

In March 2012 I went into total retention of the bladder which resulted in a year long indwelling catheter. This caused so much pain and I was put on morphine and bladder spasm drugs. Further tests revealed I have another incurable illness called Fowler’s syndrome – difficulty in passing urine and urinary retention due to the bladder’s sphincter muscle’s failure to relax. I have had two supra pubic catheters fitted and both popped due to severe spasms and in July 2014 I had a sacral nerve stimulator implanted into my but cheek to try get the nerves working again but no success. In October 2015 I had the battery placed in the opposite but cheek but as of yet this hasn’t worked either so I am now probably looking at having to endure more pain by having to have anorther supra public catheter fitted so I can urinate.

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My life as an ME sufferer is confined to beds, the slightest thing completely wipes me out, my husband is my full time carer and the love of my life. I have given him the option to leave many times as I feel such a burden to him but he says he is not going anywhere. I live each day for him my children Chloe and Robbie and my mum, without them the choice would have been a easy one to make between living with ME or not. I wanted to help get the total up for the Invest in ME Rituximab trial as I don’t want things to stay as they are for ME sufferers. I felt the only thing I can do to help raise money is shaving my hair off and was really hoping to raise much more than I have so far. Thank you to those who have donated to this worthy cause for my hair shave and anyone who can spare even a pound it really does help. Thank you for taking the time to read my story and wishing you a pain free day. Rachel x https://www.justgiving.com/Rachels-headshave

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Big thanks to all involved in this fabulous effort by the Monkman family, friends and supporters, raising vital funds for Invest in ME Biomedical Research as well as great awareness. The deed was done on 30th November and the following day Rachel said, “I’d really just like to say I’m so overwhelmed with the generosity of friends on support groups, and how my family have supported me on this journey. I am now getting rotten payback but I would do it all again without hesitation and apart from the cold head I love my new hair do. £1000 raised so that’s good and hair gone to the Little Princess Foundation for children who suffer from cancer to use for wigs = win, win.” You can watch the video here – Rachel Monkman’s Head Shave for Invest in ME.

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* Let’s Do It for ME logo products – http://ldifme.spreadshirt.co.uk

* Invest in ME wristbands – http://www.investinme.org/IiME-Wristbands.htm

* Invest in ME Rituximab microsite – http://www.ukrituximabtrial.org

* About our take on Movember awareness – Nomenbar for M.E.

* Rachel and Steven Monkman on JustGiving – https://www.justgiving.com/Rachels-headshave