So, that’s how it is, is it?

10 Feb

Rosie and Tina Nov 2013

Nov 2013. I do this a lot and other days hardly or not at all. I’m not in bed just under cover, resting, furry attendant on hand.

Just like to start off by voicing my sincere appreciation and delight to all those of you who have taken the time and trouble to read my rubbish and actually enjoy it. Thank you. Much appreciated. And profuse apologies for not being able to reciprocate and therein lies the crux.

Where I’m concerned it’s not so much a lack of time although that is an issue as my days can be very short. Part of my concern has to do with energy.

Okay, what am I going on about now?

Well, put it this way. Can you hoover or vacuum without too much trouble? Yes, I know, it’s no problem you have Ethel come in twice weekly. How about washing your hair? As in the bath or shower? I could go on with a list of questions but as I’m not a masochist, I won’t.

When I’m in the bath and I’m not getting X-rated here, I sit down with the shower hose in my hand, I rest my head on my drawn-up knees and simply let the water run over my hair as it is too painful to raise them in order to rub at my head.

It’s always been the arms. The arms always get it. Hoovering can sap what strength I have and so can brushing my hair, the latter of which can be a pain because of the action of lifting my arms up. And the severity of that depends on if I am having a good day or a bad one.

I have what I call Malaria-like attacks. That’s the easiest thing I can relate it to for easier understanding, although, every day is never free of pain be it in my back, my legs, arms or head, but I’ve learnt to live with that and just get on with it. No problem but it’s there.

I also have a limited amount of energy be it mental or physical so I have to be careful how I use up that parcel of energy. Do I use it up on cooking myself something to eat, cleaning up cat sick, or attempting to write or read something or simply getting out of bed? Don’t get me wrong, I’ve held full-time jobs down in the past. Just to confuse the issue.

Well, there’s nothing wrong with you then!

Actually, I don’t know if I’d refer to it as something “wrong” but I do have ME or ME/CFS or CFS call it what you will as it comes under all those terms.

How can you work but not wash your hair “normally”!

It’s all to do with putting all my energy and concentration on the job in hand be it my full-time job (I’m talking late nineties) watching television, whatever really which leaves me with nothing left over for anything else. Any activity no matter how simple it may appear but both physical and mental activities can be a pain of a strain.

If you’re that sick you can’t do your job properly you should be in a wheelchair!

If anything I do, or did, it better! Purely because with the ME you have to be methodical, extremely so, and because you are acutely aware of your “quirks” you pay extra attention to the job in hand. When I worked all my energy went on my job I led a strict life (I still do) and I had nothing left over for anything else. But I wasn’t complaining. I see it as nothing to complain about. I re-charged my batteries over the weekend ready for Monday and getting through each day the best I could. Which was pretty good considering. I might go a different route to most other people but I get the job done and I get it done to a high standard and simply because it’s done differently doesn’t make it wrong.

This is only touching the surface of ME/CFS. I haven’t even approached the subject of diet and allergies or stress, the mitochondrial, or how I can be quite well (at least for me) one minute when the next I look and feel like I’m auditioning for a part in a zombie film. For all I know I haven’t done a great job in explaining it. I appreciate it is truly hard to understand. I find it so although not so much these days I’ve lived with it for nearly 25 years, and I’m the one who has it! What’s going on here then! Oh, right, yep, it’s only my old friend, ME.

So that’s it really. I’m blogging to keep my hand in. Blame my old tutor! Not old in age old as in an ex-tutor. She was disappointed to learn I wasn’t writing much these days so I made the effort and got two blogs up and running (one is for Wolf Black my male alter ego) aspiring to getting my impetus and energy enough with which to finish my autobiography. On top of getting my jewellery out there. And if anyone enjoys my blogs whilst I’m at it that’s really cool, that’s fantastic, and I’m sorry I can’t keep up the pace and buzz about and reciprocate.

Just wanted to let you know.

Take care, be well, be happy.

Wolf Black blog:

Working website:

Logo featuring my books

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Posted by on February 10, 2014 in Uncategorized


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