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Our life with M.E.

Posted in Personal Blog

M.E. is a debilitating isolating and cruel illness and it affects children as well as adults. 
Tasha in her wheelchair enjoying the park and watching the ducks

Perhaps unless you have contact with a sufferer you may not be sure exactly what M.E. is as there are a number of incorrect assumptions about this illness, such as the sufferer is just a lazy work shy so and so. Just to clarify I shall give the definition that the respected Charity Invest In M.E. give…

ME stands for Myalgic Encephalomyelitis.
ME is a serious, disabling and chronic organic (i.e. physical not mental) disorder. ME has been classified by the World Health Organisation (ICD 10 G 93.3) as a neurological illness affecting approximately 200,000 individuals within the UK. Of that number, approximately 25% of those affected will go on to develop severe ME which is an extremely debilitating illness, sometimes lasting for years, in some cases, even decades, often rendering the sufferer completely housebound, wheelchair & bedbound and dependent upon carers for their everyday needs.  The Chief Medical Officer’s Report on the subject of CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) issued in January 2002 recognises that “CFS/ME should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease

To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition.

In the UK it is generally believed that at least 250,000 suffer from the disorder.

ME/ ICD-CFS is a multi-system disorder, one form of which can be associated with enteroviruses related to the poliomyelitis virus. Virally-induced ME used to be known as “atypical poliomyelitis”. There are acknowledged similarities and overlaps between ME and the post-polio syndrome (PPS), particularly concerning the nature and source of the pathophysiology, including virological evidence that enteroviruses persist in the human central nervous system. Specifically, the mechanism of the incapacitating exhaustion is identical in the two conditions (ie. in ME and PPS). In ME there are chronic sequelae and the effects may be neurological, hormonal, autoimmune and myalgic, which may include the myocardium.
Our family, unfortunately, are more than familiar with this illness as two out of three of my daughters suffer from it. We have so many questions as to why this may be but as yet have no answers. My eldest daughter has the most robust immune system of the three and apart from the odd bout of pustular tonsillitis has been fortunate with her health. It has been another story with my youngest two daughters who were both in and out of hospital from birth. 
Tasha had many issues with her chest suffering from numerous chest infections requiring hospital treatment then pneumonia when she was 5 followed by being diagnosed as suffering from asthma. She still takes a double steroid inhaler twice daily along with ventolin as she needs it but on top of those infections she also picked up every illness going round, always becoming very ill with them too. It was contracting viral meningitis followed by Scarlet Fever that resulted in her becoming sick with M.E. She then had to leave school at the beginning of year 10 and so has missed out on taking her GCSE’s, we are hoping at some point in the future that she will be able to attend College to pursue Foundation Art and Photography so she can fulfil her ambitions of being an artist and photographer.
Tara had a year prior to her diagnosis having throat infection after throat infection, she would literally go only 3~4 weeks before becoming sick again, the doctor suspected Glandular Fever but when the test came back as negative we were referred to the hospital and given the M.E. diagnosis.  Tara also was in and out of hospital from the age of 5 weeks as she was classed failure to thrive and wouldn’t feed, she became severely ill and by the age of 3 months we had her christened and we all thought at the time we were saying goodbye to her. Thankfully she rallied round but has always struggled to eat and has been left with digestive issues due to slow peristalsis of the gut and IBS. She has not been in school since the beginning of Year 6, we have done what we can at home but have just recently signed her up for virtual school via Nisai Academy to take Maths and English GCSE’s.
The most difficult thing to convey to people who try to get their head around the girls being sick is that they “don’t look sick” because when they put on their make-up and dress themselves up they can hide how sick they look. If you saw this photograph I can understand why you would think there was nothing wrong with the girls.
They have incredible strength of character and a wicked sense of humour, but once you take the make-up off and they stop putting on a front pretending they feel well then you can see the reality of the situation. Obviously, being teenage girls they don’t like people to see them that way and so prefer to have photographs taken only when they have on their make-up “mask” on.
The girls made a video for M.E. Awareness month in May to help explain to others what this illness is and how it affects them. (it is listed on both my own YouTube account and the Let’s Do It For ME! YouTube account – the link to the Let’s Do It For ME! awareness videos is here)
It’s a sad fact of life that we own two wheelchairs, a pair of crutches and two blue badges in order to go out as a family. Occasionally on good days the wheelchairs can be left behind but only if we plan our day out to ensure there is minimal walking and there are plenty of places nearby to stop and rest.
The five of us walking along the canal side for our May Walk for ME 2014

Both girls are currently very unwell right now, the illness is wreaking havoc with their lives. However, we have a new Consultant to see very soon and are hopeful that steps can be made to improve the girls quality of life. Keisha wrote a very moving blog earlier this year about what it is like for her having two siblings with this illness.

I support the Charity Invest in ME Research as I believe they are the key to unlocking this illness and finding ways to help and treat sufferers, so to this end I have joined the group Let’s Do It for ME who are a group of ME sufferers and their family, friends and carers who raise money to fund the Invest in ME research projects. I may occasionally write a blog about various fund raising activities we may do ~ earlier this year Keisha cut off her dreadlocks for her sisters and raised just over £1000 for the research fund, we always do a sponsored Walk for ME in May of each year and my husband, The Dave, grows a ridiculous beard and moustache every Movember to raise funds for this charity too. It helps to feel we are doing something to potentially help ourselves and also the other sufferers.
I know there are many other devastating illnesses and conditions people suffer from but this illness affects every decision we make and how we live our life as a family. It is horribly cruel and has robbed the girls of so much already, they make the best of what they have and we have learnt to appreciate every small moment of joy we get.
There is hope on the horizon, I truly believe that there will be treatments and solutions found to help patients in the future.  Until then we hold onto that thought during the times when the girls are unable to move from their bed, in pain, isolated from their peers. We hope that they will be able to achieve their ambitions, they are so artistic and creative I am sure they will find a way.
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