DO NO HARM, DO NO BETRAYAL


By Diane 

I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly. 


 It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis. 

To cut a long story short, it took a year to get a diagnosis during which time she literally dragged herself to doctors and hospital appointments to undergo tests and consultations (which were sometimes more like inquisitions from paid torturers).  Although Lili was severely affected and completely housebound from day one, she forced herself to go because she so desperately wanted to know what was wrong with her so that she could have treatment and get on with her life again.  However each visit and test pushed her body beyond its limits.  She was gradually deteriorating.  Every tiniest activity (physical, cognitive and sensory) from washing her hair to rubbish collection day, had devastating results.  Sometimes she could recover in a few days, other times it would take months, but often the cumulative effects of the noisy, smelly, bright, sunny, loud, vibrational, fast, chemical based world we live in were all too much and disease progression with permanent damage resulted.  Doctors always amaze me when they are puzzled by her severity and wonder why it's taking so long to 'pick up her bed and walk'.  

Lili collapsed after her last hospital visit.  She passed out with a seizure, her body violently shook, and paralysis spread throughout her body.  It was an extreme reaction to the overload of physical, cognitive and sensory attack on her body during that year, but this last journey to the hospital was the straw upon the last straw that broke her body down.  She never recovered.  My beautiful daughter is totally bedbound.  She has a diversity of symptoms that seem endless.  (Most of the very severely affected have between 60+ and 100+ symptoms).  The worst thing of all is the relentless, agonising pain.  Widespread pain in every muscle, joint, and organ possible.  She has not had one day free from headache since the illness began. 


 Her whole life now is lived from her bed.  Not her choice for she is a talented artist and photographer and she dreams of walking in summer meadows photographing the bees and butterflies dancing upon colourful flowers.   She dreams of completing her geology degree.  She dreams of paddling in the sea with her nephew.  She dreams of putting on a pretty dress with her hair all beautified.  Such simple dreams.  Her dream of having children has been snatched from her by this awful disease that others misunderstand by thinking it's just about feeling tired or attention-seeking.  The above are some of Lili's dreams but in reality, she would just love to be able to do some of the everyday things that others take for granted.  Lili longs for simple pleasures such as having a bath, cleaning her own teeth, reading a book, eating solid foods, cuddling her nephew, having a conversation, stroking her cat, looking out the window in daylight, going to the toilet rather than using a slipper-pan, and having a hug. When I hear people moaning about standing in a queue, I think 'my daughter would love to do that'.  To be able to get up, get dressed, walk, travel, shop, have a conversation, and stand are such blessings that people forget they have.  And to be able to do all this without unimaginable pain is a further blessing.

My amazing daughter has such a positive view of life.  I'm stunned that she's not depressed or angry.  Although she sometimes has her low days, her courage and inner strength are immeasurable. Not a day passes without seeing one of her magical smiles which sometimes just breaks my heart.  


Her days are spent in a darkened room and in as much silence as the outside environment will allow.  She is hypersensitive to light, noise, odour, vibration, touch, movement, chemicals, some foodstuffs, and medicinal drugs.  She can hear a vacuum cleaner five houses down the road, smell the fabric softener on people's clothes and feel the vibration of a humming fridge.  All these things can send her body into a crash at any time.  

She is unable to sit or stand due to being moribund with pain, orthostatic intolerance, paralysis, blackouts and much more and so her bed is her companion twenty-four hours a day.  She is unable to chew and has swallowing difficulties.  She can only wear light, soft stretchy pyjamas which have minimal contact with her skin.  Her skin is always 'on fire' like it's been grated with a cheese grater.  Her description. I have to cut her pyjama tops off (when she can tolerate a change of tops) because any movement causes her indescribable pain.  She has difficulty speaking sometimes and so asks me to be her voice.  She calls me her gatekeeper.  I do my best to protect her from well-meaning visitors and the noise, light, odour, vibration etc within the house to minimise the damage to her health.  However, I am limited to protecting her from the outside world.  Aircraft, motorbikes, fireworks, DIY, sunshine, heat, barking dogs, roadworks, lawnmowers, parties, environmental smells...the list is endless.

Another thing that I try to protect her from is people's attitudes towards her illness and therefore, towards her personally.  Sometimes these misunderstandings and judgemental opinions come knocking at your door. 

Last year we had to move house.  There was no choice.   Lili and I knew that it would be a huge cost to her health and in the back of our minds, we knew (but didn't verbalise), it could have taken her life too.  It didn't but it came very close.  With a move comes new doctors.  I registered us both at the local surgery straight away and booked a home visit.  I won't go into details but the GP was an aggressive rude man who insulted Lili to such a degree that I wanted to throw him out.  I remained polite but firm.  The next time I called the surgery I requested a different GP.  She came as if she had already prejudged us.  I asked for oxygen for Lili.  The doctor refused.  I asked for morphine.  Another refusal.  However, the doctor was very keen for Lili to do GET.  Not again, we thought! We had already spent three years re-educating Lili's previous GP who also suggested GET as did  the Consultant who diagnosed her.  Was there no getting away from this torturous damaging 'treatment'! 


Does the Hippocratic Oath to do no harm now state 'except for all those with myalgic encephalomyelitis?'  A couple of months later there was a knock at the door.  It was a social worker.  One of the doctors (who wished to remain anonymous) made an allegation of abuse/neglect.  I was in a state of shock and felt sick to my stomach.  To hear the words 'suspected of abusing your daughter' is something that will haunt me for the rest of my days.  The accusing doctor said that Lili was 'being kept in the dark', 'not allowed to speak', 'nursed in bed for 24hrs for 2 years', 'denied hospital appointments'.   The film, Whatever happened to Baby Jane?' springs to mind doesn't it!  The case is still ongoing.

To all those who care for their severe M.E. loved ones, my advise is find a supportive GP.  S/he is your biggest ally...or enemy.  Having their support is important because they will approve benefits and fight your corner.  They don't have to be clued up on severe M.E. as they can learn on the job so to speak.  They only need to have an open mind. 


 Next, read as much information as you can about M.E., especially severe and very severe M.E.  Read books and papers by Ramsay, Dowsett, Hyde, Hooper and so on.  Join true M.E. groups, such as 25% ME Group.  Learn about the latest biomedical research.  

Regularly visit real M.E. websites such as Stonebird, Hummingbird, Invest in ME, Dr Speedy's NICE blog, Tymes Trust, ME Action UK and so on to keep up-to-date.  Print out some of the information and keep it in a file so you have evidential papers at hand should you need them.  Read Greg Crowhurst's book, Care for Someone with Severe Myalgic Encephalomyelitis as this is packed with information which can help you protect your severe M.E. loved one and yourself from ignorant tribal thinking. 

 Knowledge is power.  You don't have to worry about being politically wordy.  Just speak from your heart.  Talk about what you know.  Your experience is knowledge.  Only you and your loved one knows the truth about the how myalgic encephalomyelitis affects your life.

Beautiful blessings to you all!


* My heartfelt thanks to Greg and Linda Crowhurst, Criona Wilson, and Christine and Tanya Harrison (BRAME) for your support, love and advice. 

Comments

  1. Dear Diane & Lili, you are in my prayers. This is sadly becoming an all too familiar story. Shame on the neysayers - the true abusers. Even the Lord weeps. Pixi (MEite).

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  2. My heart breaks (again, as it does every time I read a story like this) for Lili and for you. It is a life of unimaginable - for most - torment without the added layers of suffering endured due to lack of understanding, basic compassion and plain human decency. I too always think of the hippocratic oath and wonder if these medical 'professionals' have even a vague idea of the harm they do, the torture they inflict on those already experiencing a living nightmare.

    I wish nothing but the best for you and Lili and I hope that one day very soon the rest of the World will wake up and these horrendous stories will be consigned to history.

    Your writing is wonderful Diane, and gives such a loving insight into your relationship with Lili (where would be be without our mothers?) and this illness.

    Sending blessings and the deepest compassion to you...

    Kirsten

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  3. I have no words but only compassion and, sadly, understanding from a first hand perspective. how I long for all of this to change for everyone going through this horror, both those with the M.E and those caring for them. I cannot get my head around the neglect that still occurs in 2013. We live in darkness because we cannot tolerate light but it seems the medical fraternity and powers that be live in the dark due to ignorance and callous indifference. It is criminal

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  4. This makes me feel sick :(

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  5. I've retweeted this and shared it on my Facebook pages. You are not alone in this experience, and I want others to know that this is going on. Some day, at some point, we will reach a tipping point where people will start to say, "hey, this isn't right". Thank you for sharing. I am gutted and scared to my bones by your story and so thankful that I now have a more understanding GP.

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  6. A paper I had published in a peer-reviewed journal might be useful if people don't want to be forced to do a graded activity/exercise programme:
    Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111.
    http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx

    ReplyDelete
  7. I would like to thank you all for your kind words and support. This means a great deal to Lili and myself. It is so encouraging to know that there are so many wonderful people out there who understand. It takes the sting out of our present situation which is quite stressful as you can imagine.

    Our deepest love to you all. May you all be blessed with good health and brighter days,
    Much love
    Diane and Lili xx

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  8. Lili is so lucky to have a mother like you. ME has destroyed my life, everyday is fight. This situation is a disgrace.

    Thinking of us all and hoping for glorious normality to someday bless us again xxx

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  9. Diane, my love and understanding go out to you.
    Have you heard of Multiple Chemical Sensetivities (M.C.S.)?
    My life has been very similar to your daughters and if my experience can help, I would be honoured to share my information. Knowledge is a powerful tool to have in your arsenal.

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  10. Once again we see the damage of Wesseley and his ilk. Have you written to your MP ? Im so sorry that these horrible ignorant GPs are still encouraged in this unforgivable behaviour. How can we fight back? I have had my fair share of unhelpfull GPs for 28 years. I know that the only sollution is in research and science. And I suppose we all have to try and educate ordinary people in every way we can, but I know how terrible it is when they use their power against us . My best wishes are with you both and thanks for posting this here. I feel like the long term and severe ME sufferers need desperately to be classified differently to milder cases but with the CBT/GET lobby drowning out our case its so hard. Hopefully some some thing will give in the near future. One day people will hear our cases with disbelief, so stay positive because the truth will c ome out we will be heard in the end. I know how strong you have to be to deal with this so you are doing amazingly, both of you. Keep up the fight and never give way to their callous ignorence.

    ReplyDelete
  11. The body's cells are sick in ME. There is mitochondrial dysfunction and other chemical derangements:

    I wonder if curcumin would help a bit? It inhibits cytokines ( the bad chemicals that cause inflammation and this:

    http://www.ncbi.nlm.nih.gov/pubmed/17693979

    Neuro Endocrinol Lett. 2007 Aug;28(4):456-62.

    Not in the mind of neurasthenic lazybones but in the cell nucleus: patients with chronic fatigue syndrome have increased production of nuclear factor kappa beta.

    Maes M, Mihaylova I, Bosmans E.
    Source

    MCare4U Outpatient Clinics, Olmenlaan 9, 2610 Wilrijk, Belgium. crc.mh@telenet.be
    Abstract

    There is now some evidence that chronic fatigue syndrome is accompanied by an activation of the inflammatory response system and by increased oxidative and nitrosative stress.

    Nuclear factor kappa beta (NFkappabeta) is the major upstream, intracellular mechanism which regulates inflammatory and oxidative stress mediators.

    In order to examine the role of NFkappabeta in the pathophysiology of CFS, this study examines the production of NFkappabeta p50 in unstimulated, 10 ng/mL TNF-alpha (tumor necrosis factor alpha) and 50 ng/mL PMA (phorbolmyristate acetate) stimulated peripheral blood lymphocytes of 18 unmedicated patients with CFS and 18 age-sex matched controls.

    The unstimulated (F=19.4, df=1/34, p=0.0002), TNF-alpha-(F=14.0, df=1/34, p=0.0009) and PMA-(F=7.9, df=1/34, p=0.008) stimulated production of NFkappabeta were significantly higher in CFS patients than in controls.

    There were significant and positive correlations between the production of NFkappabeta and the severity of illness as measured with the FibroFatigue scale and with symptoms, such as aches and pain, muscular tension, fatigue, irritability, sadness, and the subjective feeling of infection.

    The results show that an intracellular inflammatory response in the white blood cells plays an important role in the pathophysiology of CFS and that previous findings on increased oxidative stress and inflammation in CFS may be attributed to an increased production of NFkappabeta.

    The results suggest that the symptoms of CFS, such as fatigue, muscular tension, depressive symptoms and the feeling of infection reflect a genuine inflammatory response in those patients.

    It is suggested that CFS patients should be treated with antioxidants, which inhibit the production of NFkappabeta, such as curcumin, N-Acetyl-Cysteine, quercitin, silimarin, alpha lipoic acid and omega-3 fatty acids.(fish oil)

    Start slowly.You need 2 a day but can push it up to 3 or 4.I know people who take 8gm a day You can order it from here:

    http://www.vitacost.com/source-naturals-meriva-turmeric-complex-500-mg-120-capsules

    You can also get the rest like alpha lipoic acid from them.

    ReplyDelete
  12. And here's another article:

    http://www.ncbi.nlm.nih.gov/pubmed/19159825

    Immunobiology. 2009;214(1):33-9. doi: 10.1016/j.imbio.2008.04.003. Epub 2008 Jun 17.

    Curcumin, a polyphenolic antioxidant, attenuates chronic fatigue syndrome in murine water immersion stress model.

    Gupta A, Vij G, Sharma S, Tirkey N, Rishi P, Chopra K.

    Source

    Pharmacology Division, University Institute of Pharmaceutical Sciences, Panjab University, Chandigarh 160014, India.

    Abstract

    Chronic fatigue syndrome, infection and oxidative stress are interrelated in epidemiological case studies.

    However, data demonstrating scientific validation of epidemiological claims regarding effectiveness of nutritional supplements for chronic fatigue syndrome are lacking.

    This study is designed to evaluate the effect of natural polyphenol, curcumin, in a mouse model of immunologically induced fatigue, where purified lipopolysaccharide (LPS) and Brucella abortus (BA) antigens were used as immunogens.

    The assessment of chronic fatigue syndrome was based on chronic water-immersion stress test for 10 min daily for 19 days and the immobility time was taken as the marker of fatigue.

    Mice challenged with LPS or BA for 19 days showed significant increase in the immobility time and hyperalgesia on day 19, as well as marked increase in serum tumor necrosis factor-alpha (TNF-alpha) levels.(TNF-alpha is a cytokine, measureable in the body as CRP-C reactive protein)

    Concurrent treatment with curcumin resulted in significantly decreased immobility time as well as hyperalgesia.

    There was significant attenuation of oxidative stress as well as TNF-alpha levels.

    These findings strongly suggest that during immunological activation, there is significant increase in oxidative stress and curcumin can be a valuable option in the treatment of chronic fatigue syndrome.

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  13. There is a gene for chronic fatigue syndrome:

    http://www.ncbi.nlm.nih.gov/pubmed/19555476

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  14. And this article criticises Wessely for ignoring the underlying pathophysiological abnormalities. Here is the whole article. Wessely is criminal


    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/

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  15. There are lots of references at the bottom of the above article criticising Wessely. I suggest you click on the links and read them You could also print out the above article and others to show your GP. However keep a record of what you have given them or record the consultation with a recorder in your handbag. I have done that.

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  16. I had Me as a teen and gfot sent to all the psychiatrists etc...the ignorance was dreadful and they made me feel like I was mad to be feeling so ill with no proof...Luckily then I recovered only for it to return 30 odd years later. i cannot believe there is still the same ignorance and labelling and my heart breaks to read your story! Why are they so narrow minded? So ignorant with so many of us ill like this? We are not made we have an illnesss...no one wants to be sick do they? Really? So so upsetting....

    Wishing you support and hugs....thanks for fighting...you fight for us all...against this ignorance and stupidity...

    Fiona
    xx

    ReplyDelete
  17. Has your daughter been tested for Lyme/co-infections? A lot of ME sufferers eventually pay to be tested for the bacteria illness and test positive. Has she tried antibiotics? In the early days I prayed to die (25yrs ago I was told I had ME after being told it was all in my mind or CFS. I was also advised to do GET -went twice-ended up worse) I am now on antibiotics and herbal meds-

    ReplyDelete
  18. I used to be much like lili and came very close to dying with this illness. (At my worst, I used to be comatose/unconscious for days at a time so not even waking to drink or eat). That skin pain, I had that to, completely unbearable, just a sheet on my body really hurt me (I had horrific bone pain with it). I wanted to die as the pain was that bad.

    My room had to be kept dark and noise really hurt me. At times I used to have to hand sign for things eg for drink (as I lost my ability to put words together and speak). I spent 9mths completely bedridden (couldnt even walk to the toilet during much of that time) and then many years slowly improving.

    I'd like to give you and Lili some hope and tell you both that I now dont have any skin pain, no bone pain, rarely muscle pain and arent nowdays "stuck" in bed, my noise intollerance is hardly an issue anymore (these symptoms over time got better for me). Headaches arent an issue for me anymore either.

    Yes Im still very sick, basically housebound (have to use a wheelchair if Ive got more then a very small shopping list) and I cant leave my house alone as I collapse too often (seizure like incidences if on feet too long or even unconciousness) and the MCS still is a big issue for me but I are now leading what I'd call some kind of okay life within the limits. I can have visitors nowdays for short times okay and okay to be taken out shopping for a very short time per week. My life is no longer "bad" but okay.

    I hope lili improves as I have done, going from severely sick (close to dying) to where I are today, able to do many things again thou Im still stuck mostly at home.

    Taniaaust1

    ReplyDelete
  19. Taniaaust1 - thank you so much for posting this, how incredible you have managed to free yourself from the pain - and the noise intolerance - for my wife Linda those are massive issues. Your message is very encouraging.

    ReplyDelete

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