Sleep waking

I hate the term CFS as many of you know, it’s a name coined by american doctors and banded about causing misconception and mis diagnosis of the realities of the true M.E condition. M.E means inflammation of the brain and spinal cord, not simple chronic fatigue. But you do experience extreme tiredness with M.E and this is a problem. Added onto that Fibromyalgia also causes extreme tiredness, having the two conditions and both extreme tiredness symptoms is, to put it in a nutshell, awful. It’s exhaustion that never goes, you go to bed tired and wake more so, which is on the outside prospective rather ridiculous. How can you sleep for 12 hours and wake more tired than when you went to bed. But trust me, and millions of sufferers, it is true. If you’ve ever been so tired that your body aches, head hurts, you cannot think straight and you feel as though you are walking in wet sand then you go to bed and sleep and in the morning it has all gone and you feel refreshed and better right? Well, when you have M.E or Fibro or both, you go to bed and wake up feeling exactly the same and each day is a constant replay of it, groundhog day with no respite. I constantly go to bed, close my eyes and I wake and feel as though I have literally just closed my eyes and it’s morning. It feels like seconds, no matter how long I have actually slept for, I never feel as though I have slept at all and add painsomnia on top of that and it is and has become a waking nightmare.

Sleep has become the one major thing I yearn for. Well, feeling like I have slept and waking refreshed. I can honestly say, I put my craving for sleep higher than I do want to ease any other symptom, which may sound crazy. But I could handle the pain, the muscle locking, spasms, neuro problems, shakes, numbness if it meant I could sleep and wake feeling refreshed. I would put sleeping above my wanting the other symptoms to get better, because sleep is the bodys way of healing and of healing the mind too yet I never feel this is happening because of the way I feel constantly exhausted. It’s as though I am sleep waking, which I coined one morning as I woke once again in total agony and tiredness. It is as though you are sleepwalking all day but you’re awake. By the way, if I see that phrase used on the internet by others, then I will want my Trade Mark recognition o.k! 😉

Today in England it is Bank Holiday Monday, May day to be precise. Many many people are happy for the long weekend they have because of this, but as I no longer work it is just another day blending into all the others. But it does stir up memories of dancing around a huge Maypole in school when I was a child. Each child was called into the dancing, given a very long piece of satin and joined in the dancing around, singing and wrapping the satin ribbon around as you went. When you had successfully managed to wrap your entire ribbon around the maypole you grabbed another piece and handed it to the next person called in. The highest of excitement was being called in twice to wrap ribbon, and I remember doing this on several occassions and feeling so important and happy to be doing it twice. I can still feel the pleasure it gave me, the feeling of importance, responsibility and fun. There will be no dancing of any kind or any maypole today, but the memories of that time and May Day will always give me happiness. For me May Day will always be a day I catch myself smiling thinking about the times many years ago the simple act of being given a second ‘go’ at the Maypole made a chubby, uncertain, not very popular young girl feel so very important and happy.