Wednesday, 20 May 2015

The space between.

I have been wanting to write again for a while, but I just haven't quiiiiiiite managed it.

But here I am, back in the blogging saddle and ready to go.

I've been trying to put thoughts together in my mind for a while now, about the space I occupy.

The space in-between being healthy, and being one who lives with a chronic and disabling illness.

Today I have been both packing to go camping at the weekend, and also looking into buying a mobility scooter.

I have been to toddler group with the kids, but also spent 4 hours in bed this afternoon. It's an odd place to occupy.

The space between.

I fit into both worlds, at different times.

At times I feel out of place and a fraud in both camps.

Mentally it can be tough to deal with. I have amazing friends who really 'get it'. But even for them I can make it hard, as some days I want to pretend, pretend that I don't always feel unwell, kind of like you do at the end of a virus, that my limbs and joints don't ache, and when there is lots of noise and stimulation I feel totally overwhelmed and tired.

Then some days, I realise I have to acknowledge the condition more. I am slightly disabled, and it's not only better for me to acknowledge this, but also better for the people around me.

There are weeks where I don't really think about CFS, I just move about in the little world I have created which works, happily resting and pottering about with the kids. I am so grateful that I have this luxury. There have been many times where I feared that I wouldn't make it back to this stage of energy/ health. And this fear isn't unfounded. There are many women, who, after having kids relapse for years and years and are bed bound entirely.

But then I remember... 

I remember it, when my kids don't like walking much, and that is largely because we don't, we drive everywhere, even to the shop across the road.

I remember it, when the weekends have to factor in a few hours sleep for me.

I remember it, when to enable my husband and I to socialise one evening, I need a lie in, then a long sleep all afternoon.

I remember it, when we need a second income, but I am not well enough to go out and earn some pennies.

The space between 'normal' energy, health, and living with chronic illness is at times an uncomfortable and confusing place.

Wednesday, 10 September 2014

Half way up.

Have you ever climbed up a really big hill?
And as you approach what you believe to be the top, you see, that there is in fact, a whooole lot more hill to climb. But when standing at the bottom, you couldnt see the actual top, just the 'pretend' top ?

Well right now, that's about where I am at with this whole CFS/ME malarky.
compared to this time last year, I am ooodles (I love that word) better.
I can walk around a shop, I can go to playgroup with the kids, I can make it to church most weeks. I can sometimes cook a meal.
It's great.
I find it hard to describe the feelings of elation at getting a bit of energy back after a prolonged period of absence. The other day, I stood in my kitchen and wiped things, I made things shiny ! Granted, someone else had swept and mopped and done lots of the other jobs, but just being able to stand for longer makes so many more things possible.

Yesterday, I found myself feeling down,  just fed up, frustrated and trapped.
After some time mulling it over a bit, it dawned on me. I have had this condition for over 10 years,  I have experienced times where it has been fairly mild, and times when its been severe, but its been there since I was 23. Thats a long time. And some days, it it just feels too much.

I keep kind of hoping that I would morph into someone who has no desire to go for long walks, or go for a jog, or go canoeing, or body boarding, or swimming in open water half way up a hill, or do a job which uses my talents or I worked hard to train for, chat at a party, or go to a conference for a full day, or, you get the picture.
But I haven't, I still want to do all those things. I know some people don't but I did, and still do, and its like i'm  in a prison not being allowed by my body to do them.

If a Doctor could give me more of a reason why I have limited energy, I am unsure if it would make it any easier, but it would be nice to know anyhow.
Having spent months revelling in the joy of being able to go out together as a family, socialise a bit more, chat a bit more, create and enjoy, a bit more...I want more.

I just want more.

It's like I have reached the 'fake top', and I can see what else there is to grasp at.
People say to me, ' ahh yes, but when you have kids everything is more limited and you can't do the things you want to'.... well yes, but I couldnt do them before I had kids !

So here I am, half way up my hill, so very happy to have made it this far, but ohhh so desperate to leave my 'half way camp' and climb to the top.

Monday, 7 July 2014

Thinkings: When people die without air.

I read this news article yesterday, and it kind of hit me in the face, you know, right between the eyes. There are so many things in the news that grab my attention, propel me out of my comfy life and force me to look, head on at the awful 'stuff' which takes place around me.
But this one, just did something a bit more than that.

If you haven't read the article, it is an account of a small shipping vessel found off the coast of Sicily. Like lots of boats approaching Italy at the moment, it came from North Africa, and was rammed to the brink with people trying to escape to Europe, in the hope of a safer life. 
When the police reached the boat, and went down to the hull, there was a mass of intertwined bodies, hundreds of them. Intertwined, like a messy pile of string, desperate to be unravelled.

They all died while trying to flee the reality of violence and poverty they were trying to leave behind.

I was lying in my bed while reading this, and two things really struck me.
Firstly, just how desperate some people, well not some, but thousands and thousands are, to want to cram themselves into the hull of a boat, just to escape to what they hope will be a better life.
I hate boats on the sea, I get VERY seasick, I hate going below deck, the fumes are horrid, it's usually stuffy and hot. These people basically layered themselves in, they paid a lot of money for this privilege, just to escape.
They second thing I found gruelling to read, was the account of a man who said he was on the boat. He was thought to have paid more for his passage as he got to sit on the deck, 
this deck.

 He said that the door which led to the hull of the boat was open, so the people squashed in the hull could have an air source. As the boat hit choppy waters, they started to try to clamber out of the hull, thus jeopardising the safety of those already on the deck.
So the passengers on the deck, shut the door.

They shut the door.

Shouts could be heard begging them to open the door.

The door was never re opened.

I couldn't believe that the people on the deck, just let them die.
They LET them die.
But then, I stopped and thought.
They shut the door, as they feared for their already volatile chances of survival.
Could they have not done some kind of rotation system ?
Could they not have explained it to them,
could they not, could they not.....?

It was then I realised, the people on the deck were richer, the ones underneath weren't, they paid less for their tickets.
How often in life could I forgo a luxury ( let alone a basic necessity to live) to help someone less fortunate than myself. To swap places with them for a brief time, just to make things more bearable.

Daily, I choose not to do this.
Human nature is to protect ourselves, it is also to help others, but there is a line.
And on that boat the line was drawn, and those people died.

If I was in that position, what would I say to someone like me? 
I don't know, I really don't. But, I suspect some on that boat, coming from Syria at some point had a life not dissimilar to mine, with all the privilege that being middle class brings. 

But then things got messy. There was war and displacement.

What would they say to me today ?

I kind of wonder, if it would simply be, enjoy the freedom I have. Enjoy and live life.
Not spend my days feeling guilty, guilty that I have, and they don't. Guilty that I am alive and those who died in that vile and inhumane way, aren't.
But just to live, to thrive, to enjoy every ounce of what I have.
Surely not to make the most of my freedom, and take pleasure in what I have is the ultimate insult to people on that boat ?

I don't know, but that is what I just wondered when I read it.

I also kind of wonder if people are going to desperate measures to get to Europe, the least we can do is share with them, just a little bit more ?

Wednesday, 2 July 2014

Ten on Tuesday

Ten on Tuesday

1. Today was my biggest's sport day, well, when I say sports day, think a gaggle of 3 year olds running about, attempting obstacle courses, not entirely sure what they are supposed to be doing. She was a bit young to fully enjoy it, but another 'First' for me as a Mummy today.
Sports day - check.

2. My little one has started walking, and he is fast. He also has an overarm throw on him, which, if continues to improve could pop him on a fast track as a javelin throwing olympian. 
So far his throwing skills have broken two mugs 
( of course they weren't the cheap ones ) and a Denby plate.

3. We went camping a few weeks back with a group of friends, it was a lot of work, and I came home with a throat infection, BUT, it was worth it, and made me very glad of the english countryside and the friends I have who are 'doing life' with us.

4. I have had more energy than usual, so am trying to reduce the price of our weekly shop, I had forgotten how much money you can save when you have energy to cook, and chop stuff, and withstand a visit to a budget supermarket from time to time.

5. I had also forgotten how much I love it when it is warm enough to make the transition from inside to outside without the need to change clothing.

6. Husbando is off with a load of stinky teenagers on a 'Duke of Edinburgh' trip this week. I am yet to decide who drew the short straw, me being with the kids solo for a few days, or him in a field in the rain. ..... jury is still out.

7. I had my eye on a top recently that I liked, was £16, just too expensive for my budget, saw it on the 'sale rail' for £4 - result.

8. I have just had a coffee with a friend who lives on our street, and has the same aged kiddos as me. When we moved here, a little way from my existing network of friends, I prayed for a friend who I 'clicked' with, who also had kids the same age, and whaddya know, she materialised ! 

9.  I always love Glastonbury weekend, I set myself up with some tasty snacks, get my remote and enjoy the festival vibe from the comfort of my dry sofa. Have to say some of the presenters this year did my head in just a teensy bit, I used to love it when John Peel and Jo Whiley just winged it as they went along. Getting a bit old maybe ?!

10.  This little chap was fairly grouchy for most of our camping trip, apart from when eating strawberries.........

Monday, 30 June 2014

Moments of Joy

When the sun comes out, and I have the energy to go out in it, Life always feels good !
We have had a few trips away over the past few months, Here are a few snaps of my girl, enjoying herself. 
I am very thankful for happy kids, most of the time mine are, and on the times when they are not, I tend to put on some loud music, and ignore them.
(Watch this space for a parenting book to be written...... or not ! )

 By the stream on the campsite we went to in Edale....... 

 In our friend's garden at Easter..... there is lots of Joy in dancing isn't there ?

Sunday, 22 June 2014

A catch up and a few Thinkings.

It seems I haven't written a blog post for about three months............I'm not entirely sure why, I think mostly it is due to the fact I have been reading a bit more. It's been great to have the mental energy to read again, and oil up those rusty brain cogs of mine, setting them in monition once more. 

I have been feeling like I'm ready to explore a bit more theology, and where the Christian practises I am part of originate from. In the past, I guess I have been a bit tentative about digging too deep, asking too many questions, as sometimes it's easier to listen to a leader at church, (who you are fairly certain isn't a total loony) and kind of go with what they think.
(I hope I'm not the only one who is perhaps that lazy ?!)

Here is a whistle stop tour of a few 'thinkings' and things I have been reading lately. 

It's been very much in the forefront of the media, Christians everywhere are being forced to consider what they actually believe God says about LGBT marriage/relationships, I too have been trying to make some space in my head to consider this. 
This blog by Vicky Beeching, has been a great starting point for me, and has helped me to look into varying view points around the theology of sexuality.

Another thing I think about a fair amount is suffering, God, prosperity, and how the three lie next to each other, This lady's blog has been another place to help me explore these things Tanya Marlow.

Sometimes daring to question things can be tough, isolating and a bit scary. 

The book 'Found' by Micha Boyett has been on the top of my reading list. She explores the way Benedictine Monks pray, at intervals throughout the day, and uses that as a pattern for her daily prayer, in the midst of changing nappies, working and attempting to connect with God. It's like reading a book a friend has written. I identify with so much of what she writes. Thoughts of feeling like my life doesn't quite have the positive impact on the world and the needy as I hoped it would, and disappointment that my prayer life often resembles more of a mumble, or a 'tweet', rather than an intersession. Anyway, it's good, I would recommend it ! 

The energy fairy has definitely been kind to me in recent months. Despite currently writing this from the sofa, a bit too knackered to get out this morning, in general, I 'm doing really well. Getting out and about, picnics, camping trips and cooking a few meals here and there.....things are good ! 

Here is the little one, in the wheelbarrow, 'helping' to mix the concrete for our patio.

Bye for now, and hopefully I will be writing again soon ! 

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.