What is it like to have ME?

What is it like to have M.E?

I was asked this question at a time when I didn’t have hours to explain.

So I said:  ‘M.E  is when a person is seen staring into space and seemingly comatosed.’

The person did not question me further.  I didn’t mean it to be a closed answer, I just couldn’t think of a short, concise, simple sentence that really described M.E.

Then someone else said that they read of a person who was suddenly cured of M.E. after 10 years, they simply got up and were well.  How is this possible?

I said: “Some think that one cause of M.E is tiny misalignments, so if the misalignments are re-aligned, they may feel better than they have done in years.  But I think that M.E. is fast becoming a generic expression for many illnesses.  So that what helps one M.E person, may not help another.”

So I thought I would publish a definitive answer to: What is it like to have M.E?

The following describes what I used to be like:

I used to be in pain all the time.  The pain would range from 1 on the pain scale of 1 – 10 to 10.  The pain was mainly in my spine and my head but could radiate out to everywhere – my fingers, joints, legs, face from dull aching to sharp shooting pains.

I have food intolerances and if I totally avoid certain foods I am virtually pain free.  I think the pain from consuming foods one is intolerant to is the cause of fibromyalgia which I think I have too, and this is diagnosed by certain areas of pain in about 15 different areas when palpated (felt).

I didn’t sleep very well and despite being very tired could remain awake all night long.  My muscles would spasm and cramp with excruciatingly painful cramps.  My heart would leap about in almost painful palpitations that would take my breath away.

My thinking can be totally confused when I am stressed.  While I suffer with very mild dyslexia – I get names muddled up, this gets completely out of control when stressed and I can’t think of my words or what I should do, or understand what I am being told, I have to ask for help.

My hair would range from being a dried up bird’s nest to sleek and shiny.  My skin would be unbearable itchy.  I cannot tolerate synthetic chemicals and all shampoos and conditioners make my scalp sore and ache with a periphery migraine sensation threatening.  This migraine, sick-y sensation can also appear when in a room with Lilies or synthetic chemicals from room fresheners, cleaning products to laundry detergents.

When an M.E person expends energy, depending on the amount, they will be ill for days afterwards.

Their illness can range from digestive problems from diarrhoea to constipation to stomach and gut pain, dizziness, not sleeping at all, incoherent speech, exhaustion and picking up any germ going from colds to bacterial infections.

I think that is about it!  Please comment if you have M.E. to add any more.

However to add a positive note to this:
What helps M.E?

Ah ha!

Many of the symptoms of M.E. correlate to deficiency symptoms of nutrients. One being Calcium.  You must not take a calcium supplement without magnesium present.  So some M.E people think that there is a magnesium deficiency but I don’t think there is, I feel it is a Calcium deficiency for many many, many reasons which I have already mentioned on this website, but will do so again if necessary.
Therefore with very good reason a Calcium and Magnesium supplement helps with many of the symptoms.

Omega 3 from Fish Oils is also very helpful.

Avoiding allergens. Get yourself tested and the best test is York Blood Test. Yes there are flaws with allergy/intolerance testing but they are minor and I will explain when you write in.

Avoiding every single scrap of synthetic food only fit for machines not humans or animals and that is: margarines, soft fat spreads, refined ‘cooking’ oils, additives, emulsifiers, skimmed or semi-skimmed milk, preservatives, added gluten.  For you none M.E-ers reading this the soft fat margarine industry lie when they tell you it helps heart conditions.  A change in diet from synthetic foods to natural foods will help and eating a variety of foods and reducing the amount.  M.E is helped by eating only natural-as-you-would-grow-it-yourself food.  I am currently trying to persuade a relative to make a ‘smoker’ so that we can make our own naturally smoked bacon which would then be sodium and potassium nitrate free. (and completely delicious!)

I think that M.E is the old fashioned nervous breakdown and is caused by a depletion of nutrients due to stress and poor quality foods.  I think that it can take years to recover from this depletion and that a gentle approach is required.  I think too that this depletion of nutrients can cause untold damage to the body which may not be repairable but can be improved.

I think that this gentle approach has not been fine tuned by anyone who knows anything about M.E.

But naturally being nearly 80% well from M.E myself, I think I have the answer and the system to the gentle approach and that will be coming out on a DVD soon.

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