Wednesday, 2 November 2011

The Monster and I.

Most of us have a Monster which lurks somewhere in our lives, waiting to pounce, to annoy, to frustrate plans, joy and the smooth running of life.

The more i notch up years on this earth, the more I realise, few people's lives are easy, pain free or happy all the time.

7 years ago my Monster came to find me, and has kind of turned everything topsy turvy ever since. CFS ( chronic fatigue syndrome ) It's a funny old one, not life threatening, not degenerative but still Chronic none the less. It swept me off my feet, and not in a good way. Many hopes and dreams, not huge and lofty, just everyday things, qualifying as a teacher, spending time with friends, working, cooking, walking, have all been taken away to some degree or other. 

I am by nature a pretty 'glass half full' kinda girl. After spending years of trying to think - it's not that bad really, and madly adjusting my life so it doesn't consume me totally, I have since concluded that actually it is quite horrid, it isn't what God planned for me, and no i don't enjoy watching copious amounts of tv in my pyjamas all day cos i can't do anything else. 

There are plenty of days when the CFS monster stays firmly in it's hidey hole, and I can potter about in a kind of 'what a normal person might do on a lazy day way', a short trip to the shops, a meal with friends, or tidying up and cooking a meal. I like these days, and feel fortunate to have them. Many people with CFS don't and remain bed ridden 24/7.

The thing is, is that everything takes energy, everything. And it's not until you don't have it, that you realise. Thinking, talking, listening, reading, watching, sitting rather than lying, decision making, all take energy, never mind the physical side of life. And it's these things which are the hardest struggle.

The Monster confines me to bed, in the dark, on my own...... lonely, frustrated, tired. Occasionally joyful of the rest, happy to have a bit of time on my own with a good run of 'come dine with me to watch', or an obscure interview on radio 4, but mostly it's not where I want to be.

I am more at home pottering in the garden, getting on a bus to work, going for a swim, talking, talking, talking. Doing things for others, cooking, and nesting. Don't get me started on nesting, i love to nest. Some people reserve this past time for week 37 of their pregnancy, i am in a constant state of wanting to feather my nest for anyone who wants to dwell there. I don't like watching others do it for me, it's my nest and I want to clean it, tidy it and provide for those in it.

But today is a good day, I am going out with my daughter, there are adjustments that I have made which I don't even think about now, but occasionally i stop and think, ' this is crazy' most people don't have to pack a changing bag in the lightest possible vessle with the minimun in it, cos other wise i can't carry it and the extra weight will mean It would leave me achy and exhuasted for a few days after. Or 'no I can't stay out for more than an hour or two - cause talking to you is draining me totally'.

However, the Monster hasn't taken my close friends, they are strictly off limits. It's tried, but credit to them, they haven't let it. Friends, Family, and my wonderful caring, loving, heavenly Father are still as they were, and for them I am more grateful that I think they realise. Helping me to live, to get out, to rest when I need to, to eat a proper meal not just biscuits, and to laugh along in the midst of what is sometimes just plain silliness. I mean, who sits in their sitting room and combs their hair with a fork which was on the floor from yesterdays tea, cos they haven't got the energy to walk up the stairs to get their hairbrush ? That is just silly.

I am hoping to say farewell to my monster one day soon, but until that day I shall acknowledge it's presence, ( ignoring it really just makes it more vicious and powerful) and live within what It permits me to do. 


  1. bless you hannah. You are winning a little more every day x

  2. well done on doing something that's not at all easy to write down & express, i look forward to reading more - from one of your babycentre pals who absolutely understands x

  3. This is very moving and powerful stuff Hannah.Who you are and what you do in spite of the monster are seriously and in the true sense of the word amazing,(p.s..Didn't realise you had such a gift for writing-this is excellent)

  4. Beautifully written - and I do hope that the monster spends more days hiding away over time. I completely understand the packing thing and the doing what seems a ridiculously small amount wearing you out. Thank you so much for linking up to Love All Blogs - keep us posted on how you're doing?