About me

Age: 35
Seriously ill for over 16 years.
Bed-bound. I struggle to breathe and swallow.

I have Vascular Ehlers-Danlos Syndrome, very severe Myalgic Encephalomyelitis, heart failure, POTS and dysautonomia.
Diagnosed in October 2018 with Atlanto-axial instability (AAI) and Craniocervical instability (CCI) due to the EDS.

I’m a published poet (my poetry collection: Rainbows in my Eyes, 2009) and a blogger when my hands allow me to be (which isn’t very often).

Things that I have written:

My reading history:

My most recent poems:

My favourite fictional female characters:

All the things that you never wanted to know about my life with an acute chronic illness:

Severe M.E. and me – my story:

Words that help me:

Confronting my own internalised ableism:

The eternal dilemma of trying to Sort myself into a Hogwarts House:

My greatest wishes on my 29th birthday (+ health update):

My Favourite Things:

Fictional male role models:

When it hasn’t been your day, your week, your month or even your 8 years:

My buzzfeed listicles: http://www.buzzfeed.com/stroopwaffle

About M.E.:

Myalgic Encephalomyelitis is when a virus or enterovirus (or an as-yet-undiscovered retrovirus) causes:
• inflammation of the brain, spinal cord and nerves
• deficiency and dysfunction of the immune system
• failure of the mitochondria (the body’s energy is manufactured in the mitochondria), which leads to muscle failure, and heavy exhaustion
• damage and dysfunction of the heart and cardiovascular system
• dysautonomia
• dysfunction of the digestive system, including poor absorption
• extreme sensitivity to noise, light and movement

The hallmark of Myalgic Encephalomyelitis is deterioration upon any slight activity/exertion/movement. Gradually trying to increase your activity can cause permanent damage. The severity of the disease varies greatly from person to person, with some having to be tube-fed and bed-bound, whereas others are just about able to manage a part-time job. In some cases it can be fatal.

Dr. Daniel Peterson, a leading M.E. clinician from Sierra Internal Medicine in Nevada, found that “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. The Head of the AIDS and M.E Clinic at Oregon Health Sciences University said that a severe M.E patient “feels effectively the same every day as an AIDS patient feels two weeks before death.”

This is a disease that should no longer be controversial. Professor Anthony Komaroff (of Harvard Medical School) confirms “There are over 4,000 papers on the biomedical nature of ME/CFS…spanning over 60 years.” It beggars belief that some doctors still believe that this is a psychological disorder. But it is not surprising since the psychologists/psychiatrists who have the government’s ear have vested interests in the health insurance industry. The Countess of Mar has slated this corruption recently in The House of Lords: http://www.meassociation.org.uk/content/view/826/161/

Unfortunately this all means that the NHS’s treatment approach is based on the should-be-void psychosomatic model of M.E./CFS. If sufferers want any biomedical treatment, we have to go to a private doctor. Internationally renowned Dr. Jonathan Kerr of St George’s University of London and Dr. Sarah Myhill in Wales are at the forefront of M.E. research and treatment in this country. They have discovered that CFS is “heart failure secondary to mitochondrial malfunction”: http://home.att.net/~potsweb/atp.html

Dr Sarah Myhill has published a paper which details ‘A Test for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)’ which she is now using to diagnose patients. The NHS and NICE however are unlikely to even acknowledge this, such is the ignorance and corruption surrounding this illness. http://www.prohealth.com/me-cfs/library/showArticle.cfm?libid=14274&B2=EM021109C

Not only do we have to cope with a serious illness, we have to cope with disbelief from doctors, friends and family. NHS doctors in their ignorance prescribe GET (Graded Exercise Therapy) which has proved to be harmful for most M.E. patients and has caused many to get irreversibly worse. Professor Malcolm Hooper and Margaret Williams wrote:

In relation to the potential dangers of exercise for people with ME/CFS, there is evidence that in some ME/CFS patients, their antioxidant defences against free radicals (which can cause damage to the cells of the body) are overwhelmed, resulting in cell injury, a process known as oxidative stress. Exercising muscle results in excessive free radical generation, and research has demonstrated that incremental exercise challenge induces a prolonged oxidative stress in ME/CFS patients, who are known to carry a heavy load of oxidative stress.

There is real concern that not only is CBT (Cognitive Behavioural Therapy, the other “treatment” provided by the NHS) ineffective, but that GET is potentially harmful to patients with ME/CFS. It is known that GET may leave up to 82% of ME/CFS patients who have undertaken it irreversibly house or bed-bound. Given what is known about the disease, this is hardly surprising.

About Vascular Ehlers-Danlos Syndrome:

People with Vascular Ehlers-Danlos Syndrome (vEDS) have a mutation of the gene COL3A1. This mutation alters the structure, production and processing of a protein in our bodies called collagen. A huge amount of our bodies are made up of collagen; it provides structure and holds our bodies together. This is why having faulty collagen is such a big problem and why my body is falling apart in so many ways. It is multi-systemic and as you get older, the condition deteriorates. This is why it is getting increasingly difficult for me to breathe and swallow.

The vascular type of Ehlers-Danlos Syndrome, which is what I have, is life-threatening and the majority of people with vEDS don’t live beyond their forties. This is because the blood vessels and hollow organs in a person with vEDS are fragile and prone to spontaneous rupture, due to the defective and weakened collagen. This is why I have had such a problem with uterine haemorrhages.

It is important that paramedics and doctors be educated about vEDS so that in an event of a rupture, patients be dealt with correctly and quickly, which is key to our survival. For example, aortic dissection is pretty common among vEDS patients but it can easily be mistaken for a heart attack so it’s essential that awareness amongst the medical profession be raised.

I wasn’t diagnosed with vEDS until May 2015 so I’m still getting my head around it.

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