Boy, it’s cold.  The wind is wuthering around my attic office, buffeting a flock of jackdaws who are playing in the clear blue above my skylight.  A dusting of snow picks out the intersecting tractor trails on the hillside opposite, giving the impression that they are wrapped in grey-green tartan blankets.  I have a cheerful yellow fleecy blanket over my head and shoulders, babushka style, trapping the heat that travels up through my body from a hot-water-bottle in my waistband.  My furry ‘dwarf boot’ slippers are keeping my toes toastie-warm.  I might look strange, but I’ve learned the importance of hanging on to what heat I have.  Sitting here, writing a blog, I could whack the thermostat up to 30 degrees and still feel cold.

Most people get chilly quickly when they sit for long periods, since the blood flow slows with the heart rate and begins to pool in the feet.  When you start with an abnormally slow pulse and underactive thyroid, the chill sets in even more quickly. Fibromyalgia is just a term for a nasty collection of symptoms; feeling cold to your core if you stop moving is just one of these.  It’s a contrary, vicious beast of an illness, setting up many impossible choices:

I have no energy, so I need to rest,
If I stop moving my heart-rate and temperature will drop,
My body will seize up into excruciating aches and pains.
I’d better keep going!
Oh how I need to rest . . .  
And back to the beginning again . . .  

Thank goodness that the aches and pains are a thing of the past at this stage in my recovery, but the cold is not.   I am still working to find out why my heart rate is so low; it’s the final piece in my fibro puzzle.   It has taken me two years of nutritional supplements and retraining my brain to accept that self-care is OK, to recharge my physiological and emotional batteries.  I have now reached the point where I no longer wake up feeling as if I have been beaten. Sudden frights or emotional upsets no longer leave me a cold, shattered wreck for days afterwards.  Now I understand what is happening in my body, where all the crazy symptoms and wandering pains come from.  Now I know why I have been wearing a snood indoors and complaining of icicles down my neck for years.

Fibromyalgia, chronic fatigue syndrome (CFS), ME are all facets of the same fundamental problem.  Whether you got here through years of stress and self-neglect, or through the sudden assault of viral illness or cancer, these syndromes describe the very personal ways in which your body is screaming, ‘ENOUGH!’  It has been overwhelmed by the demands placed upon it and the delicate balance of the miraculous systems of your body has been knocked sideways.  My bone-deep cold is a reflection of the damage that has been done to my exhausted thyroid and adrenals.  After years of permanent Fight or Flight they settled on Freeze and the metaphor of the animal frozen in its tracks became real.  Each time I needed that surge of adrenalin I would feel instead the slow trickle of ice from the crown of my head, down my neck, shoulders and back to the very base of my spine.  What followed was days of wobbly knees and the exhausted struggle to put one foot in front of the other.  

Exhaustion, now there’s a loaded word.  It is the only one which comes close to encapsulating the way in which fibro drains and flattens you.  For a healthy person it is a useful way to describe how you feel after a long run or a major digging session in the garden.  Exhausted is how you feel when all your adorable toddler’s tiny friends have gone home at the end of a birthday party.   A nice cuppa or a good night’s sleep is usually enough to get you up and running again and if you need to, you can always manage just that little bit more.  

I remember being flabbergasted when I found out that the vast majority of people with fibro, CFS or ME are the type who have always tried to do it all, who find it difficult to say no and who shoehorn everyone else’s needs in, to the point of excluding their own.  Why the surprise at something so obvious?  Maybe it’s because people who can ‘push through’ the exhaustion are praised to the skies and interviewed on TV and radio as inspirations for us all.  

‘Wow! Look at this person who has successfully completed the Marathon des Sables twelve times!’  

‘How do you manage to run your six businesses as a mother of eight?’  

‘Read my book on how to have it all!’  

Where are the warnings that the human body does have limits?  By these measures, all of us with fibro / CFS / ME should be lauded as superheroes, but instead we have been taught the hard lesson of what exhaustion really means and then told to go home, stop complaining and learn to cope.  When you are living with these conditions, exhaustion is a state of being, a word that quickly wears thin for your healthy doctors, friends and family who just want you to stop moaning and get on with life.  Like many others, I found myself screaming to be heard when I ran out of words to convey just how tired I was ALL THE TIME and had no idea why or what to do about it.

I may still be struggling with the cold, but at least now I know that my symptoms do all make sense and have a real, physical cause.  I was absolutely right when I stated that I was exhausted and not just tired.  Now I understand I can act on it.  When I become frustrated that I am still cold, that I still can’t do all that I used to, I look back and see how far I have come.  I remind myself that I don’t want to go back to a life of crazy busyness, of boom and bust energy.   Living life in the slow lane, enjoying saying ‘No,’ and appreciating the little things makes me so much happier and a little warmer.  Until I find the final puzzle piece and kick-start my pulse I shall use all the tricks I have learned to keep warm and happy.  And now, as I bring this piece to a close, I’m off to reboot my pulse with a few minutes of joyful bouncing on my new mini-trampoline.

If you are struggling to understand your symptoms, have a look at my resources pages for the books that helped to explain it to me.  Consider signing up for The Chrysalis Effect, where you will find a wealth of information and wonderful support from people who are going through the same experiences as you, or who have come out of the other side.