A little hello.

A few weeks ago, a good friend asked me why I hadn't been blogging recently. I had to think about why. Perhaps a mixture of being up and about a bit more, but then when I have rest time, I need to sleep to recover in order to do the next block of 'activity'. There is also the fact that I waste/use up hours on Facebook, and recently have been getting stuck down the rabbit warren that is Twitter. But also, I have been reading some brilliant and challenging blogs I stumble across, and finding that what I would 'say' has already been said, so then I don't bother. 

The last 8 months or so, have mostly been lovely. Really really lovely. My two little ones are growing and developing in a way which I feel so grateful for. They are healthy and strong, have fun and amazing opportunities presented to them weekly to explore and learn, it's every parent's dream really, isn't it ? It sometimes takes my breath away when I watch them, and know how safe they are, and how much education awaits them, such a contrast to the images I see regularly on twitter of families fleeing, surviving, and dying. 

The juxtapose of my life, and what I see on social media is a head wrecker most of the time. 

I find, as I am emerging out of the 'baby stage' and on the slow road to both my kids being in some kind of education/nursery, It raises loads of emotion for me. The questions all mums have of 'what will I do now' or 'great, I can do what I'm already doing but not have to pay for childcare' etc etc. 

I think for me, it raises some disappointment and sadness. The lack of career is a tough one. My degree sits largely unused. Today both my kids are being looked after by others so I can rest, sleep and have enough of a breather to be able to function as I need to. Today, that reality feels sad. Other days, I feel nothing of that sadness, but instead the joy every mum feels of a quiet house for a few hours in amongst the chaos of life with a 2 and 4 year old. ( My 2 year old is getting louder - he is LOUD )

I think it's all about feeling I don't have a place, or fit in somewhere. Although my experience of having small children has varied lots from my peers, I have fitted in, with the chats of struggle, of tiredness, of 'will our clothes ever be folded again', not being at work all week. Before my children arrived, I inhabited a space which most twenty somethings didn't, being at home a lot during the week, but occasionally being well enough to hold down a few hours of work. 

But then, I think, I consider, I have never really been someone to 'fit in' with the standard path, so I guess I just need to bed down and find my place again. 

I read this a while ago....

' And I dig into this place, looking for truth and mining for the joy that is always in the mix. 
And as I do, I glimpse hope and possibiity looking back at me '

When I read it, my soul was shouting 'ALL THE YES'.....
This is it, just how I feel.
It was written by a brilliant lady, she blogs ....here at 'thehippochronicles' ( crazy name for a blog ! )

Another reason I haven't blogged much, is cos I am SO very very bad at grammar, I know I am a sloppy writer, and when you read an abundance of well written blogs, It shines a mirror up to my lackadaisical approach to writing. I am no perfectionist when it comes to writing, there's no denying it !

I will leave you with some snaps of the two faces that keep me ticking along. and hopefully, a promise of some slightly more focussed blog posts again soon ! 

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.

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.
Progress.
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.

Church ramblings

I have been thinking a lot about Church recently, what it is, what I think about it, and what God thinks about it. I have always been a 'churchy' kind of girl, always loved going, and kind of felt at ease there. I know this is far from many people's experiences, but right now I can only really write from my own.

I have sat myself in a variety of pews, chairs, cushions on the floor, and stools. All in different 'types' of churches. Pentecostal, Baptist, Anglican, Evangelical, Methodist, Assemblies of God, Pioneer, New Fronteers, House Churches, 'We haven't quite defined ourselves yet' Churches, and all the other types in between.

I have found God in all of them, I have also found heartbreak and sin in all of them too. Cos Churches are full of people, and where people are, there is always mess.

People are messy.

But I still believe that Church is what God wants me to be part of.

Before I had CFS, being 'in' a church was mostly what I 'did'. I worked there, worshiped there, played there, and while I spent time at university too, I guess my whole time schedule revolved around 'Church'. I don't regret this, and felt at the time it was the thing I wanted to do. That was ok. But gradually having CFS has made it really hard for me to be part of the church I loved. It was too energetic, too many people all at once, too big a commitment. I found I didn't really have a place in some parts of it as I was so very unreliable. It wasn't any one's fault, just circumstances. It has taken me years to get my head around this, I kind of felt like my right arm had been chopped off. Those years were tough, really tough.

So I have had to take a step back, from 'doing' things in church, and just work out what are the most important things, for me.
Then, in time I use my small bits of energy on those.
And with the arrival of children, they have changed again too.

Conferences, I can't really 'do' conferences, they are big, and loud and exhausting, they take huge amounts of energy, emotional and spiritual. I do like christian conferences, but I also think that maybe, just maybe we all spent too much time preparing them, making them look flashy and appealing, advertising them, then being at them. When really, our energy could be spent elsewhere.
That's what I have discovered anyway.
They often seem to be filled with communicating the latest 'trend' in churches, I don't have time or energy for churchy trends.
Just keeping it plain and simple is where I am at right now.

I also like biscuits, cheap custard creams dunked in a cup of well brewed tea, this stands me in good stead to enjoying most churchy gatherings :)

In the past year we have moved to a different church, and it has been a bit like buying a new pair of Jeans. My previous Jeans were wonderful, initially fit me really well, but over time my body shape changed, and I needed a new pair, My old Jeans will always be my favourite I think, but the new Jeans enhance my shape better, and match better with the rest of my wardrobe.

................................... There is more to this post, but I have been writing it for a few weeks, so in order to ever post it, it needs to come in segments.....right now I am watching cbeebies and playing a game with my daughter - not the most conducive environment for clear writing ey !!

The Week

This week has been the first of five when the husbando is off work. We decided to make a bit of a schedule for the week, so I got enough rest, and he knew what was happening when. We have learned from a few bad holiday times, that this is a good recipe for our family.

I am so contended right now. Tired, but not totally exhausted, which is preferable.
Husbando tends to do the nights with our newest member, and I spend most afternoons in bed, this means we can usually do something for a few hours altogether in the morning.

Wonderful.

Today was a trip to a museum. The day had a bumpy start, all very happy, we just realised our little tyke had made it to the train station - sans underwear. With a flowing dress on, we soon realised what had occurred, and Daddy had to hot step it back home to bring knickers ! I have to confess I was vaguely aware that she might not have underwear on, but kept on forgetting and then kind of just hoped I would have some in the change bag somewhere. ( she also had her dress on back to front - that was much more easily remedied )

When all Deane family members were suitable clad with underwear, we boarded the train and made our way to the city centre, the journey was a happy one, LT kept all adults within close proximity amused, with her commentary on the journey, and every so often shouting down the train to Daddy ( who was standing with the pushchair ) 'ARE YOU ALRIGHT DOWN THERE DADDY?'  She just about falls into the category of being young and cute enough to get away with such behaviour.....in a few months, it will just seem annoying.

I was fairly pleased to hot step it around the museum at a 2 year olds concentration pace, not being a huge fan of museums, and my energy reserves flashing on dangerously low, a quick look at the aquarium and a few dinosaur fossils ticked our 'been to the museum' box nicely. We had a cafe pit stop, then loaded up our pushchair/wagon of children and junk and off we went, back to the station to make our way home, on a very hot sweaty train.

The deed was done, we just about made it home. I collapsed into bed, spent, but happy.

When living with the CFS monster, it's unpredictability can be hard to cope with. On days like today when it allows us to do what feels like a normal family morning, I am one happy lady.

The need for nurture.

If I had a machine which could translate my 3am thougts whilst lying awake in bed this blog would be a hive of activity ! But I don't, so here are a few thinkings which have been buzzing about for a week or two......

As you have probably realised from previous posts, the last few months have been ones where I have been more dependant on others for more things than usual. My lovely Husbando really has been pulling out all the stops to help me. He cooks, tidies ( sometimes ! ) does all day to day jobs and at the weekends brings me food in bed while I rest and he cares for Little Tyke. It's been an interesting road the past few months as I have pondered a lot what it means to be 'nurtured'. I have needed lots of practical help on and off for the past eight years, but practical help is different from someone or something nurturing your soul........Do you know what I mean ?

Towards the end of last year, I reached a point where I needed more than just physical rest, I had been carrying around the stressful thoughts of how to cope with another baby and other day to day life cares and they all kind of, well, got to me more than I ever thought they could. It's a scary place when you have no reserves to draw from emotionally and physically. People say  'well you just do what you have to, to cope when you have kids'  and I have always kind of lived by that. But with CFS I have been confronted once again that I can't do that - can't live by that moto. It's been difficult to come to terms with that again. You see, I am a bit of a 'get on with it' kind of person. I love to care for others and probably get too much affirmation from being able to do that, so when it all comes to a point where I cannot nurture and care for others, mainly my Husband and Daughter it kind of rocks my foundations. 

But I am learning S L O W L Y that no matter how 'capable' you are, practical, organised, a 'can do' person, you still need to be nurtured. Still need help bringing up kids, still need a friend to hear you cry when you feel like you might not actually want to care for baby growing inside you, as it feels too much......... The real nitty gritty stuff which no one likes to say.

Our souls need nurturing, sometimes by God's gentle kind words of encouragement, and sometimes by his hands and feet on this earth, our friends and family.

For me, not being able to be the Mum and Wife I would like to be is what I find the hardest. And having my husband care for me is, well, tricky for both of us. But, I have to say these last few months I have felt cared for and nurtured by him on a whole other level. My friends and family have done this too, and I realise it has been good for me, through tears and feelings of terror at the day ahead, I need to be nurtured. 

It's made me ponder showing this need more in day to day life when my energy does pick up a bit more, because, you see, another thing I have realised is largely it's me who has to make myself available to receive care, only through being vulnerable to we show people our true needs, longings and brokenness, can we receive the kindness and care they are waiting to give.

During a conversation with a close friend of mine, we were chatting about how when you become a Mum, the need for being nurtured ourselves increases. As we give out constantly, we have to get that replaced somehow, or we run dry, really dry. While many of us like to think we can just run on empty, really, we can't. As my wise friend so rightly mentioned, If we don't acknowledge our own needs, then it can make us hardened in our relationships, resentful and well, just not as nice. (I was always told the word 'nice' is bad to use, but at this juncture I think it's quite appropriate ! ) 

Today the sun is out, and I feel like I am beginning to feel ready for this next baby to take our lives by storm, with love, cuteness and the delirium only a newborn can bring. The house smells of fairy non bio as the babygros are washed, and the bottles dragged out the cupboard, all ready for his arrival. I feel ready to meet him, to give what little I have to nurturing his early days, resting in the knowledge that God will be with me, nurturing, holding, and caring for me, at times through His word, and also through the strong and capable hands of my husband ( he does have particularly large manly hands ;) ) and family. 

Thinkings

Haven't written many blog posts this last week or so, partly cos i've had a lot of 'feelings' ! And well, sometimes it's best to steer clear of sharing these with the world wide web I find. Other times it's ok, well maybe it isn't....................I am still undecided.


Sometimes blogging ( both reading and writing ) just seems like a gross over share of personal information and thoughts. Other times it feels, well, right.


I know I'm not the only one who periodically sits back, takes stock of life, my life and the others close to me, and just kind of chews it all over - Wondering what it's all about, if the bad things will get better, and if the good things are ok. And I think it's been a month of that.


It's strange how happiness and sorrow, completeness and dissatisfaction can sit so comfortably together isn't it ?


I was recently pregnant, then I wasn't, that was very sad, but also a strange relief...............


We were skint, then we weren't - that is nice, better..........................


Husbando has a job, but might not for much longer, that is a little less certain that we'd like, but not too much of a worry.........................


Willow was a baby, now she's a toddler who throws saucepan lids, and blows kisses to the lady behind the boots counter...............................


I was in my 20s, now i'm firmly in the land of 30's, a little unsure how to dress this summer...........................


I ate cake for breakfast more often than is advisable, so now weigh more than i'd like to.........................


I planted bulbs in december, now there are beautiful flowers....................................


The chancellor made a new budget, a few of us are worse off, but essentially life still just ticks along......................


These are my chewings, my thinkings.


And this is a pig, a huge ugly pig. But I thought he looked strangely cute, a deserved his snout to be published. 

NHS and M+Ms

Today I am more than a little sleepy, having been out for an early tea with some lovely mummy friends ( without the kids  ) and then not slept very well, due to annoying sore shoulder I am feeling a bit, well, drugged to be honest.


This week has been a funny old one, more than a few trips to the hospital for reasons I might go into another time, and a clinic appointment today at the CFS service. ( I have been waiting for the appointment for months and months - today was the day ) Have all contributed to a rather 'NHS heavy' week.


As expected, the lady I saw basically said that I am managing my condition very well ( gold star for me ), and need to keep doing it, and hope for the best..........................But not expect full recovery anytime soon. So there you have it, an encouraging, (albeit slightly less hopeful) prognosis from a health care professional than I had hoped for.


One thing I do need to vent about slightly is this..... I was referred into the CFS service initially about 7 years ago. And amongst other things they said under NO CIRCUMSTANCES must one with CFS sleep in the day, cos it messes your body clock up. I was more than a little baffled by this, as a brief sleep in the day is what was getting me through. Anyway, true to form, obedient old me followed advice and fought my way through without a sleep for YEARS. Eventually I realised that I actually slept better at night if I had a brief sleep in the day, so threw caution to the wind and incorporated a nap or two every so often into my rather odd way of life. However today I discover that 7 years on, the service has developed and evolved and hey presto,  ' a sleep for an hour a day won't do you any harm' ............THANKYOU ! I knew it wouldn't. Trying not to feel annoyed about this issue, and have to say I am learning that listening to your instincts is more often than not, the way to go.


Being told you are good at managing your condition, and already putting into practise all the advice they have to give you, is very nice in one way. But at the same time, I was hoping for some new revolutionary discovery which could actually........wait for it..........make me reach 100% recovery. Alas my hopes were too lofty.




So for now, I will drag my tired little behind, off to bed, and enjoy the memory of my little outing out last night with the girls, and eat a big old bag of peanut M+Ms......they are a large part of my recovery don't you know.