Thursday, 13 March 2014


Not very often, but occasionally, I get quite cross/mad/irate, however you want to label, those feelings of utter frustration and powerlessness about a situation.

Whenever you read something about CFS/ME it is usually about 'managing' it, and rarely about a 'cure'.

This sucks.

Over the past ten years, I have become a bit of a pro at managing CFS……which is great, but also not, at the same time.

It confuses me how my body can have such little energy. At the moment it has a whole lot more than it has in times gone by, but there is no certainty that it will remain this way.

Yes I am doing 'well', life is pretty good, but it's all due to a lot of careful planning, timetabling, and pacing.

I can't climb a mountain ( or even a hill ! )…..
I can't swim for more than a length at a real push….
I can't walk more than about 400 meters…..
I can't spend a whole day socialising…….
I can't go to a church conference….
I can't go out in the morning with my family and then stay up and alert in the afternoon too…..
I can't go out in the evening more than about once a month.
I can't commit to anything, as I don't know If I will manage it on the day.

I don't usually list these things, as it's not the most positive way to 'manage' CFS, but sometimes it does me good to stare CFS in the face, and see all it takes from me.

I would LOVE to be fully better, fully well, tired like any other parent of two small kids, but not to the point of exhaustion.

So many thoughts have to go into planning a trip….can we park nearby? will there be seat to sit on,………..

I guess I could do most of those things on the list above, but would spend a week in bed recovering.

The thing I find the hardest to deal with, is the mental fatigue. When spending time with other people, which I really enjoy, I just kind of run out, run out of energy to think and talk. I can do it, but then I need lots of recovery time afterwards.

There has to be a reason, for it.

I refuse to believe that there isn't.

So there they are, the thoughts which I usually hide in the back of my mind, safely tucked away. Preventing them from eating away at my positivity, and enjoyment of life.

As, most of the time, I really do love my life. I have two beautiful healthy kids, a husband who is healthy and with me.

This year I celebrate my parents 60th birthdays…….amazingly rich am I.

It's pretty great.

But if the CFS monster could get lost, I would be glad.

Ten on Tuesday

Ten on Tuesday

1.  I hear there are some parents who manage to dress their kids in matching socks EVERY day, and have well hoovered cars. I aspire to such dizzy heights. Our car has it's own micro system, largely started by rice cakes and bread sticks.

2. The sun has come's spring. THANK GOD.

3. My boy mostly says 'this' or 'see'....think I need to start using some more useful words to add to his vocabulary.

4. 2- 4pm.....I dislike those hours. Give me 10am every time.

5. At the moment this is our favourite book..... So funny and is a book long poem, love it.

6. If I was ever to do a PHD it would be research into where socks and teaspoons go. WHERE ARE THEY ALL ?

7. It's 1pm and I need to think of something to do this afternoon. I have had lots of offers from lovely friends of company, but today I lack the energy to hurd/police/play with my small kids whilst simultaneously talking to someone else, so we are going it alone. 
Daddy had a breakfast meeting and one after work too, so it could be a loooong one.

8. Most days we watch Balamory, and every time I look at 'Miss Hooly' and want to climb into the television and give her a restyle. Just call me the fashion police. 

9. World book day - more like 'world dressing up day'......nuff said.

10. I'm thinking give it another week or so and I will be wearing my flip flops - 'FREE THE FEET'....
I like to think my feet will look like this 
the reality will be RATHER different.

Happy Tuesday friends !

Monday, 3 March 2014

A quick 'helloooooo'

I have been lacking blogging inspiration lately, but wanted to check in, to share some of these lovely images of my boy. 

My newly 1 year old little squash.

It's been a really fulfilling year for me as a Mum. 
This little chap has made it an easy task, he's a gem.

Saturday, 8 February 2014

Day trips and birthdays

In a week or two, my littlest Deane, will be One. 

One whole year of pooing, eating, crying and bringing mostly joy into my life. Celebrating his birthday will be a little different from how we celebrated his big sister's. No tea party with other 'baby friends', we are going to keep it just family. One of the things I have always thought about first birthday's,  is that they are more for the parents than the kids, and thats ok. Celebration of a year survived and mostly flourishing. We ( I ) really wanted to go on a family trip to an aquarium. Little tyke, my 3 yr old loves fish and all things aquatic, and little little chap will stare and enjoy most things. I wanted to go on a little trip somewhere, mostly because thats what families do isn't it ? The CFS monster seems to have beem kinder to me over the past few months, so half a day out somewhere is now possible ( woop woop !).

I'm beginning to look at places to go, things we could do, but woooooah it has kind of slapped me in the face how much all these things cost. And if I'm really honest, the reality that we can't afford to be a family which frequently goes to places like this, has kind of hit me hard. Its a weird thing, because I grew up in a family in the 80s, with four little people in it, and like most other families then, going to the zoo/aquarium/fairground etc was a rare thing. A countryside walk was our entertainment and we loved it. But I guess now, these things are more common place, and I have suprised myself at how much I want my kids to go places just like other kids do.

I know in my 'knower' that at the ages of 1 and 3, a trip to a park and an ice cream is going to bring them much joy and delight, I know that when we go camping in May, running around a field in the long grass, will be the thing they remember - Not that we didn't go to an Aquarium or Zoo on their birthdays, but it's still there, nagging in my mind, that I want them to ..…do….enjoy…..experience.
We really are pack animals us humans aren't we ? We like to do what other people are doing, And I am no exception!

We have a season pass to a safari park which is near our home, and my kids have an abundance of toys, friends and fun makers in their lives. They really do lack nothing, but I am much more content about the fact that I will probably buy most of my clothes secondhand for the foreseeable future….than I feel about my kids missing out on something. 
We have a lovely house, filled with beautiful things, have more clothes than we need........and are constantly amazed at how people help us out to enable us to pay for things to make our lives easier while my health isn't great.

But where my kids are concerned I want them to have it all.

Not sure if this feeling will ever go, but for now I want to admit it's there, and not bankrupt us in the persuit of fulfilling it !

Tuesday, 21 January 2014

A chilly day

On my birthday just before Christmas, we popped along to a nearby National Trust haunt.

It was one of those delightfully crisp, and chilly  winters day.

Trips out like this are what I live for really, It sounds trite, but it's the sum total of all I love about life, being out in God's amazing creation, with my beautiful family. 

Thursday, 16 January 2014


Sometimes it can feel like a bit from the bible is kind of chasing me around.

It's always a good thing when this happens, I guess I feel like it's the way the Big Guy up there reminds me of something, or, it's just a coincidence.

I'll let you decide that.

Either way, When it happens I need to remember to write it down, so here it is ;

'Faith that can move mountains'…….it's a phrase you can hear a lot when part of a charismatic faith filled church. It's a great one line phrase. Which can stir everyone into a frenzy of trying harder, and Believing and hoping, oh so much hoping for Miracles and things to change.
But can often leave me feeling a little inadequate in my faith in what I believe God can ( or will ) do.

I heard a lovely talk recently about where this verse came from ( or where he seems to think it does, i'm not sure of the validity of this information ! ) Anyway, before Jesus used the example of faith being strong/effecient enough to 'move mountains' There was an event in which King Herod had decided he wanted to build something where there was a mountain ( or big hill….who knows how they defined things in those days ! ) So he set his slaves to work, moving said 'mountain' so he could build what he wanted where the obstacle was. I don't know any details, but I'm guessing it would have taken a loooong time, maybe even years, and was an event which most people Jesus spoke to would have remembered. The guy doing this Talk reflected that sometimes faith isn't just about praying for a HUGE thing to happen, and it happen straight away, but how change can be small, and seemingly insignificant, and take a LOOOOONG time.

I also read a blog post about a man who did a similar thing, taking YEARS and YEARS just so that children in a local area could build a small make shift school…..he quite literally moved the side of a small mountain, with just his hands and a wheel barrow.

I guess with these examples in mind, I do have 'faith that can move mountains'………Just one small step at a time.

Wednesday, 1 January 2014

The year endeth once more...

What a year this one has been………

This time last year there was a person growing within,
Now he's come out and I'm once again thin, (ish)
He drained me of all I had to offer,
Spending endless days in bed, and eating like a troffer….
Eventually he emerged, with a fair bit of pushing,
Then he ate and slept, (with quite a lot of 'shushing')

He grew and developed, now he can crawl,
Little tyke has started nursery,
But most of all, 
I have my two kids, both healthy and happy
(Unless Woody is sat in a dirty nappy) !
He's quite loud, my youngest little Deane,
Playing on his own, he is not keen.

I thought I may break under the pressure;
CFS, a baby and a toddler,
Not a great combination to offer,
I am loving life right now, tired, but not broken, content and satisfied,
With my friends, family and life with a pushchair ride.

But the year 2013 has been and gone,
I know that it won't be long,
Til i'm writing my end of year poem once more,
So 2014, give us your best,
I will give it my all, and God can do the rest.