Monday, 10 May 2010

M.E awareness day

May the 12th is M.E and Fibromyalgia awareness day, Unlike many of the illnesses that you have herd of that ask for money into research and have big charities to raise awareness, M.E and Fibromyalgia are the poor relations. their are not the charities raising funds to help us, to find and answer to our our plight.

the M.E Association helps and trys to further the research into this disease that affects over 250,000 people in England alone. 5% of those will be totally bed bound needing constant care, 25% of those affected are considered to be severe and needing help to do daily tasks such as dressing washing or cooking, im sad to say that i fall in to this category.

the severity of M.E is often discussed in percentages this is cos we use these to gage how much energy (for want of a better explanation), we have in comparison to a healthy person who is at 100%.

imagine that your energy is no longer on tap but that each time you use some like a battery you have less left to use, and each time you recharge that battery because you have completely depleted it it take less charge so you have less energy each time.

each day i wake up i have 15% of the energy that you have the problem is if i use all of it on that day tomorrow i will have less. so i can never use all my energy in one day i have to save some of it for just in case. if i over spend then i cant recharge sleep does not make me better as i wake each day as tired as the day before, on top of this you will have numerous other symptoms caused by your body's lack of of energy, such as dizziness on standing, IBS, poor temperature control, pain and i dont mean the odd ache that you are used too, i mean constant gnawing stabbing pain that leaves you short of breath.

the sad thing about M.E is that there is no treatment, and so very little research into its cause, for a long time its been considered to be a cognitive illness that, can only be treated by CBT and GET. even those these have proved to be ineffective and in the case of GET actually making us worse. M.E has since been shown to be a physical illness, however the cause, and treatment have not yet been discovered.

so we are left untreated as the poor relations of the nhs, we are given palliative care and left to it half of us believed, half of us ignored.

so the 12th of May is M.E awareness day if you read this you have helped by just looking and listening.

M.E destroys lives in the same way as any other long term illness such as MS, and is as devastating to the sufferers and families as cancer.

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