Five years in and a new diagnosis

eds1 At the end of March I finally had my appointment with the Geneticist my Mum & I had insisted on seeing. It had taken a couple of years of research and we had to go through a very rude and unhelpful appointment with a Rheumatologist in October, who had wondered why I would be bothering to get a diagnosis for something that was ‘worse than the one I already had’! We had to travel to Exeter but it was well worth the trouble. Dr Turnpenny was a very refreshing change to previous appointments. He listened to my symptoms. He had read my medical history and was sympathetic to the various ailments and symptoms I’d had throughout my life. Then he linked it all together with the confirmation of ‘Ehlers Danlos Type Three, Hypermobility syndrome’. As we left his office we both had tears of joy and relief, joy to have been heard and understood, and relief that our suspicions were right. Then followed a period of shock, the trip too see him was enough to cause a flare up but the realisation that I was actually ‘really’ ill as apposed to the nightmare of the ‘CFS/ME’ diagnosis and all it’s ‘baggage’. It is incredible what an effect other people’s perception of your illness can have on you. Even what you think other people’s perception of your illness is! With the label of ‘Chronic fatigue syndrome (CFS)/ M.E’ you are carrying the weight of years of tabloid abuse, ‘yuppy flu’. A complete misunderstanding of why you simply cannot do all the things you want and used to do, along with the frustration that treatments that have worked wonders for someone else don’t even touch on your own disabilities. I have been on a dual path of recognition and diagnosis from conventional medicine along with explanations and treatments from complimentary medicine. The marked difference is that conventional medicine treats your diagnosis and once you have a diagnosis you can only be offered treatment that the NHS ‘NICE’ guidelines recommend . Complimentary medicine looks at all the various symptoms and signs presenting at any particular time, regardless of what name the collection of them has been given. I have come to realise recently that some complimentary therapists treat symptoms in an allopathic way, like mainstream Doctors, for instance pain killers given for pain rather than ask why you may be in pain. The difference is that the treatments are more natural and without the inevitable side effects. Through the many therapists both conventional and complimentary I have learned the following about my body; EDS: a genetic fault in the production and repair of collagen and connective tissue, exacerbated by hyper mobile joints Nervous system: at some point, quite early in my life, my nervous system was switched onto ‘sympathetic dominant’ and the ‘parasympathetic ‘ has been failing to kick in. This means that my body is in a permanent state of ‘fight or flight’. This drains the adrenal glands and causes digestion issues and immune system failure. Mitochondria: these are the cells from which everything in your body gets its energy to work. There is a cycle known as ‘Krebs’ where ATP is recycled into ADP. This cycle isn’t working. Due to my weakened immune system my mitochondria became blocked with Arsenic and Chlorinated phenols stopping the cycle.( Tests for Mitochondria available from Dr Sarah Myhill, see link below) Adrenal Glands: On numerous occassions throughout my life I have been told that my Adrenals were exhausted. This basically means your batteries are flat, and if you can’t recharge your adrenals, you have absolutely no energy. An extreme form of this is called Addisons disease. ( Again, Dr Myhill and many complimentary therapists can have your adrenals tested.) Digestion: due to the nervous system, digestion is no longer a ‘priority’ when in ‘fight or flight’ mode, all resources are directed to limbs and basic survival meaning that food is not easily digested. Due to the connective tissue disorder the lining of my stomach just isn’t complete causing ‘leaky gut’. Undigested food leaks into the blood stream causing pain and discomfort. POTs (postural orthostatic tachicardia ) due to the mitochondria failings and low blood pressure my blood pools and fails to circulate efficiently making sitting or standing upright very uncomfortable. Light headedness, dizzy spells and fainting mean that regular laying flat helps the body to function. Anaemia:a constant suspicion of Anaemia now confirmed by the medical herbalist that I see. Knowing all of this I can now accept the label ‘Chronic fatigue’ as quite obviously my body is chronically fatigued by what it has been trying to cope with. M.E? I don’t know where I fit or stand with regard to ME. Although it is well known now to be a viral infection of some kind that affects the immune system, inflaming tissues in the spine and or brain, I have not been tested and am unlikely to ever be tested for it. It is quite possible that I have had or still have it but I choose now not to worry about it. For me EDS explains what is going on with my body and although medically, as the Rheumatologist had told us, it is a ‘worse diagnosis’ as they have no cure, to me it is a far better diagnosis as it explains what is going on with my body and ‘connects’ all the symptoms with the ‘connective tissue’ disorder that is EDS. As it is something I was born with and has triggered various ailments throughout my life , I did have a good run of almost forty years where I was not only able to look after myself but also travel the world and have my own business. What I have come to realise is that what is happening to me now is a ‘flare up’. From physical and emotional stresses my body was quite simply unable to keep it up. I had pushed myself too hard for too long. I now realise that the balance was upset and I now have to get that balance back again. I believe that we all have a ticking bomb of one sort or another inside us, be it cancer, heart disease strokes or dementia. If we can keep our bodies in balance both physically and emotionally then we can keep these monsters at bay. I have the advantage of knowing what and where my monster is and I am learning how to live with it, in harmony so that I can enjoy life and function again. I have learned so much over the past five years and more recently listening to books by Dr Bruce Lipton I know that our cells respond to the environment that they ‘perceive’ they are living in. Our personal perceptions of what stress we are living in affects us on a cellular level. This is what I find so exciting, the science and the spiritual joining together, now to unite them within myself. I still have a long journey ahead of me and my body is so ‘out of balance’ and has been for so long that I cannot expect improvements over night. I am however at least on a path. I am being treated by Lucy Jones from Myrobalan clinic, very conveniently in Castle Cary, and am confident that her combination of medicinal herbs and Tibetan medicine will help to get me back to independent living, and maybe even more! http://www.ehlers-danlos.org/ http://www.myrobalanclinic.com/ http://www.drmyhill.co.uk/

 

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