10 rounds in the ring

Some days I feel like I've done ten rounds in a ring with Mike Tyson. 


Having CFS is a lot like being in a boxing ring with a very unpredictable opponent. And some days when that bell rings to signify the end of the match, the hand the ref holds up to signify the winner - certainly isn't mine.


Wednesdays are usually a day when I feel like i've done at least 10 rounds in the ring, and am definitely floored.


Some days I take the fight slow and steady, with plenty of breaks when you sit in the corner with the towel around you neck, with a pep talk from the coach, other times I fight just a teensy bit too hard in round one, so by rounds 4, 5 and 6 there is little fight left in me.


But I'm getting better in the ring, knowing a few sneaky tricks to help me beat my fierce opponent, do come in handy !


Other times I just have to lie there, floored again, with my trusty coach reviving me for the next time we go head to head. 

Have to say I'm not a fan of boxing.

Churchy ramblings

It's funny (well the opposite really ) when things in life don't go how you plan isn't it ? I don't think they ever go exactly as you plan cos you only have the knowledge and experience of things as you are now, and a plan is usually in the future, so you never know how things/you/life will be then, so how can things go as we plan ? huh ?................................. I have no idea.


I think I am finally realising that when things don't go how you had planned for a loooooong period of time, it's time to make a new plan. Or dream a new dream. 


I have always been a 'churchy' kind of bod. Whatever plans there have been in my head, have always involved God, His plans, His church. But more recently 'church' the place you go on a Sunday, has been a tricky place to get to. The old CFS monster forces me to rest lots over the weekend, so that has to come first. I guess it has been like that for a loooong time, but pre baby I always had monday as a recovery day. ( a recovery day from church - I know it sounds weird ey !) but now my Mondays start at 7.30am if I'm ready or not, and require me to be vertical for most of the time until about 6pm. So the Sunday trip to worship God in church with a bunch of other crazy God botherers, mostly doesn't happen. Let alone any other activities like this during the week.


But family goings on and a tricky health type situation isn't always easy to fit into something you have always done. My faith is more than just going to church on a Sunday, but not being an active part of a church rattles my cage a little.


So it's time to have a re think, how does all this fit together? This stage of life, the bit now, in this decade, the bringing up small kids bit. how does it work with church/CFS/kids/husband/staying sane.


It's time to look at it all from a different angle, rather than trying to force my life, our lives, into the package I thought it would fit into about now. This feels like a more positive way of looking at it, not just what I/we as a family can't do, but what we could maybe make work somehow. 


I don't have any solutions to this conundrum just yet,  but I'm beginning to try to discover one. I would give anything to go back to when Jesus was on earth, or in the early church, and hang out with some families from that time. I would love to see how they intertwined family/marriage/children/poor health/bereavement into the way they lived as a community of people following Jesus. I think I get it a bit, but I'd love to know more. I'd love to read some letters to the early church written by a woman. Don't get me wrong, I love paul's letters, but he was a man, and well, lets be honest, probably a slightly chauvinistic one. So yes, ACTS written by a woman, I'd like to read that. Or the Gospel according to Mary, or Martha maybe. 


Anyway I digress from what can only be described as really rambling ramblings.


I read recently one of those quote type things - the ones I usually dislike, it said 'live the life you have, cos it probably won't change and might not get any better '. 
.............Yes that sounds awfully pessimistic, but I think you can make that a moto with hope dolloped alongside it, with one eye on the glory that is to come. I find this prospect painful, but exciting at the same time.


Life on this earth might not get easier, but finding Joy and delight in Him and what I have now is the way to go.


I think for the time being anyway.

A cloudy week.

It's been a funny week, kind of daunted as to what to 'blog' about, as to be honest, not that much has happened. I am usually the master of making even the most mundane occurrence fun, and report it with great gusto, but this week The CFS monster has been out to play and has kept me a bit cooped up at home. A few plans cancelled which I was looking forward to, and a feeling of frustration hovering over me like a cloud on a dreary day. 
There have been a little outing or two to a baby group thanks to a very lovely 'Mummy friend' who came to whisk Willow and I away to a room filled with toys and places for Willow to roam. But there has been a lot of time in bed, and lying on the longue floor while Willow crawls around and gets up to mischief. 


When I started writing a blog, i never set out for it to be about CFS, as i don't like to give it that much of a place in my life, but it really does affect everything so it's difficult not to include it really. As I write I start to think of the things that have happened, and there are often more than I realise, so i guess that's a good thing ....................


I met my friends new little squashy baby, weighing in at a whopping 11lbs, he was a delight to cuddle, and squeeze. A beautiful boy. There is something so special about new babies, they bring so much hope, optimism and innocence. 


I also dipped my toe in the world of making ' salt dough', and I have to say I am rather pleased with the result. It has taken me a few days to clear up the mess and dry out the little creations. But we are well on the way to having some heart shaped christmas decorations to hang about the place when the festive season arrives. For me completing little creative projects like these are essential, they often take me twice as long as they should, as I get exhausted mid way through, and have to wait til another little portion of energy arrives to complete the task, but when I hang something on my wall, or send a little card in the post, it gives me a sense of achievement that watching TV all day just doesn't do.


One positive about having very limited energy, is that the thai meal I was hoping to cook to celebrate the Hubster's birthday, is now going to be cooked for us by a delicious thai restaurant, who also do take away - Wonderful.......... It will taste better, and they'll be no washing up to sit on the kitchen table for a few days til someone throws it in the dishwasher. 
So, while I have shed a tear or two about not being able to cook for my beloved, I am thankful to 'chilli banana' and their culinary delights. 


And a cheery, silly picture, to end a rather 'cloudy' post....

What more do you need in life, than your Gramps and a Rhubarb leaf as an umbrella ?

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. 

Welsh Wanderings...

Self catering holidays are definately lovely, but there is a lot of work to be done either side isn't there?  Not so much the washing, but more the unpacking of random things which got stuffed in the car any which way 'cause you just want to get home'. Think babybel stuffed in a small ugg boot and you kind of have the idea..........

I still haven't located my phone charger, but have come home with the camera charger which we left at the cottage last time we went in May - So a fair swap i think.

Anyway, here are a few little highlights of our Welsh holiday.......


Obligatory viewing of Welsh steam train. Willow cried the sort of cry you would expect from a 1 year old when a noisy train passes and then unexpectedly toots it's tooter - horn? er what is it called ?!

A rare opportunity to play in an old phone box. Which i think was more for my benefit than anyone else's really.

Picnic with friends, We managed to turn up without the vast majority of the things we needed, but still had fun and made do. Some of my fondest memories as a child involved going on picnics and having to cut cheese and bread with anything i could lay my hands on, and fully intend to carry on the tradition. 

Then there was lots of lovely Autumnal light....

I am still recovering from the coastal walk where I took this picture. But with scenery like this, it's hard to stay inside with your feet up. The dreaded chronic fatigue still likes to come on holiday with me, but looking at these pictures make the forced days in bed seem a bit more worth it. 

And Dad, this one is just for you......

We ended our jaunt with a bit of time with my family, these are two of my three siblings, who are indisputably the best anyone could ask for. They are as lovely as they look in this picture. The sort that just turn up at your holiday cottage, do yesterdays washing up, cook you a delicious roast, wash up again and then help you pack up and clean up after a weekend of mess they didn't create. They are a little barmy tho, there is no denying that. But that is why I love them. 

So until next time Wales, i bid you farewell.