Living in a Disabled World

My brother recently posted an article on Facebook that was published in “Perth Now” an aussie on line news station. It was entitled “Dads losing fight to balance work, family”. Now it was published given this title to coincide with Fathers Day in Australia thus trying to excuse itself from being ever so slightly sexist (we will overlook that). If you can overlook the ever so slightly sexist stance (see I really am trying to overlook it) and actually look at what I believe the author was trying to convey it is true for all working adults that have children regardless of gender, it is difficult to balance a modern family life and a modern job.

I work full time, I have a disabled husband and 3 children. I am doing a distance learning degree with Bradford College and am about to start my Masters with UWE on day release from work. I have 2 dogs, I have a large garden (disabled husband, guess who does the gardening…). Now you might think all these are life style choices I have made. I chose to have 3 children, I choose to work, I choose to live in a rural property with a large garden, I choose to educate myself. So therefore given that this is all my choice who am I to complain that I don’t have any work/life balance.

This is just another example of how modern life has changed. I remember the 1970’s (yes I really am that old and thank you for thinking I don’t look it), my Mum stayed at home and looked after the children, we had a car although not everyone we knew did, we didn’t have a telephone the phone box in the street was perfectly ample for our needs. We had new shoes, warm clothes that covered our bodies and food on the table (ok I hated stew but it was good wholesome food and no one had even heard of McDonalds). We had a TV, a small brown square box that sat in the corner and had childrens programs on for an hour in the evening. I recall my father purchasing our first VCR and how special we felt getting this new gadget. I don’t remember as a child wanting more. I remember at Christmas asking for a toy that was the latest must have. One year it was Orvil the Duck and I was so desperate for him. He was my “BIG” present.

So fast forward 30 years. Every household has at least one landline telephone and just about every member over the age of 10 has a mobile phone. Every family has at least one car if not one car for every member of the family. Every room in the house has a TV if not a TV and DVD player. Every household has a pc or 2 or 3.

There is a price to be paid for being a consumer and that is you have to earn money. So my point is, yes modern life is hardwork. It can be tiring but in a way isn’t it our choice that we live this way. We don’t have to have a mobile phone, I don’t remember feeling deprived in the 1970’s because I didn’t have a telephone let alone one in my pocket. Work/Life balance is called balance for a reason, have you ever tried to balance the type of scales that have a pan either side you get one side right and the other side tips slightly. Modern life is like that you either except it and get on with it or you get out of it, which some people do choose to do. if I were really brave I would get out of it, I would become self serficient, stay at home, grow veg, have a few animals, not worry about fashion because I don’t need to, etc. But wait did the scales just tip again?

August has been manically busy! After we came back from holiday in Wales we have had friends staying in their caravan in the garden. Fran has been to stay for a week and hopefully will be back next week too. Work has been really busy with the continuing Lean project. I haven’t had time to stop.

I have been planning on making cup cakes for about a month now and haven’t managed to get around to it. I need to harvest the last of the beetroot and make chutney. The eating apples are ready to pick. There are raspberries that I should be making jam with. Thier is rhubarb that I should be doing something with, can’t decide what yet. Their are lots of tomatoes to make chutney with, loads of peppers and chillis to freeze.

This weekend we plan on a quiet weekend at home catching up on all these things, do you think we will manage it?

Front Garden

2 Years this Sunday from when we lost Fin. Since we lost our last baby last May I haven’t felt much like blogging other than to post a few random songs that meant something on the days that I posted them or amused me for some reason or another.

So where am I now. Well we have moved on quite literaly. We moved house on the 15th May 2009 and life moved with it. We had decided after I nearly died miscarrying in May 2009 we had done all we could to have another baby and I also turned 40 which I always said was the cut off date. Does that mean I don’t think sometimes about having another baby? Of course it doesn’t if a miracle happened tomorrow I would be overjoyed but I know in reality miracles don’t happen and I am content with where I am now. I have turned my attention to the children I do have.

Bean grows every day he is so funny now at 5 years old. Since starting school last year we have seen him grow in confidence and knowledge it is amasing to watch him and I am awed every day by who he is and what he can do. Snail has moved closer to us and we get to see her regularly. I love her totally and unconditionally. Pants has just taken her AS levels and is waiting for results next Thursday, have everything crossed for her but I know she is so clever she will have done well.

K and I got married this year. A very quiet wedding just us and no pomp and ceremony, very personal which is what we wanted.

So what do I fill my life with? I do a lot of gardening our new house has a massive garden and I am attempting to grow our own fruit and veg. I learnt a lot last year and have learnt even more this year. It isn’t as easy as it looks. Sure planting stuff in the ground isn’t difficult but controlling the weeds and when to plant and pick stuff is certainly an art. It can be hard work too with working full time.

Work is going well but I certainly do more hours now than ever before working most days from 0800 until 1830 doesn’t leave me a lot of time in the evening for very much. I get home, spend an hour with Bean, eat dinner, put Bean to bed. Water the garden, watch Corrie and go to sleep to start over again the next day.

So that is a brief where I am now. Life is good on the whole. I am settled. I am happy. I am alive.

I really should blog soon

We are the village green preservation society
God save donald duck, vaudeville and variety
We are the desperate dan appreciation society
God save strawberry jam and all the different varieties
Preserving the old ways from being abused
Protecting the new ways for me and for you
What more can we do
We are the draught beer preservation society
God save mrs. mopp and good old mother riley
We are the custard pie appreciation consortium
God save the george cross and all those who were awarded them
We are the sherlock holmes english speaking vernacular
Help save fu manchu, moriarty and dracula
We are the office block persecution affinity
God save little shops, china cups and virginity
We are the skyscraper condemnation affiliate
God save tudor houses, antique tables and billiards
Preserving the old ways from being abused
Protecting the new ways for me and for you
What more can we do
God save the village green.

I’ve got nothing on my mind: Nothing to remember,
Nothing to forget. And I’ve got nothing to regret,
But I’m all tied up on the inside,
No one knows quite what I’ve got;
And I know that on the outside
What I used to be, I’m not anymore.
You know I’ve heard about people like me,
But I never made the connection.
They walk one road to set them free
And find they’ve gone the wrong direction.
But there’s no need for turning back
`Cause all roads lead to where I stand.
And I believe I’ll walk them all
No matter what I may have planned.
Can you remember who I was? Can you still feel it?
Can you find my pain? Can you heal it?
Then lay your hands upon me now
And cast this darkness from my soul.
You alone can light my way.
You alone can make me whole once again.
We’ve walked both sides of every street
Through all kinds of windy weather.
But that was never our defeat
As long as we could walk together.
So there’s no need for turning back
`Cause all roads lead to where we stand.
And I believe we’ll walk them all
No matter what we may have planned.

Don McLean

Paint your palette blue and grey,
Look out on a summer’s day,
With eyes that know the darkness in my soul.
Shadows on the hills,
Sketch the trees and the daffodils,
Catch the breeze and the winter chills,
In colors on the snowy linen land.

Now I understand what you tried to say to me,
How you suffered for your sanity,
How you tried to set them free.
They would not listen, they did not know how.
Perhaps they’ll listen now.

Starry, starry night.
Flaming flowers that brightly blaze,
Swirling clouds in violet haze,
Reflect in Vincent’s eyes of china blue.
Colors changing hue, morning field of amber grain,
Weathered faces lined in pain,
Are soothed beneath the artist’s loving hand.

Now I understand what you tried to say to me,
How you suffered for your sanity,
How you tried to set them free.
They would not listen, they did not know how.
Perhaps they’ll listen now.

For they could not love you,
But still your love was true.
And when no hope was left in sight
On that starry, starry night,
You took your life, as lovers often do.
But I could have told you, Vincent,
This world was never meant for one
As beautiful as you.

Starry, starry night.
Portraits hung in empty halls,
Frameless head on nameless walls,
With eyes that watch the world and can’t forget.
Like the strangers that you’ve met,
The ragged men in the ragged clothes,
The silver thorn of bloody rose,
Lie crushed and broken on the virgin snow.

Now I think I know what you tried to say to me,
How you suffered for your sanity,
How you tried to set them free.
They would not listen, they’re not listening still.
Perhaps they never will…

I am feeling a little better today and certainly more with it. My body is starting to hurt as well so that is probably a good sign, means all the blood is flowing where it should do again.

Went to bed Sunday evening with low back ache and crampy stomach pains and there was the tiniest bit of fresh blood so I knew things were on the move and thought “good I can get through this, the end is in sight now”. Woke at 0330 on Monday morning and started bleeding much like a heavy period. Felt ok so made a coffee and pottered around. I posted on my blog to say goodbye to Rosie as I knew she would be on her way soon and it would be goodbye forever. Things went on like this until about 10am when the bleeding got heavier and the cramps got worse. So I thought it will all be over very soon and I can start to get on with life.

At about midday I started to feel really light headed and by now was in quite a lot of pain. Running back and forth to the loo all the time thinking it will stop soon and I will start to feel better. At about 3pm I collapsed on the bathroom floor. I don’t know how long I was there and I couldn’t get anyone as I couldn’t move or speak because I felt too ill. After a length of time I managed to bang the bathroom door and K came up. He got angry because I couldn’t stand up I managed to crawl and drag myself back to bed. O was stood on the stairs and I was more worried that he would see me like that than what was happening to me. I couldn’t understand why K was shouting at me and getting angry I could physically move it was horrible. After a bit laying in bed I started to feel a better. I had to make a few more trips to the bathroom and felt very light headed every time, had to keep my head down if I stood up straight I felt I would pass out. I felt sick, dizzy and confused. My neck and shoulders were aching as I couldn’t hold my head up properly it hurt too much. All of this was going on in my head I couldn’t tell K how I felt I didn’t have words or I couldn’t understand. I thought things would be ok in a minute.

8pm K called the out of hours doctor by now I was starting to find it difficult to sit up in bed and couldn’t get out of bed. I couldn’t breath properly and felt so ill, I couldn’t hear properly as there was a rushing noise in my ears. All I knew is I wanted to stay at home I didn’t want to go anywhere. I didn’t want to be told I was overreacting or being silly.

The out of hours doctor came out and took my bp 70/50, he rang an ambulance. The ambulance crew were lovely I still felt everyone was making a fuss even though I was too ill by now to argue. The ambulance crew asked why we hadn’t called an ambulance earlier and I said I didn’t want to make a fuss I was just miscarrying. He told me I wasn’t just miscarrying I was bleeding to death.

I was in A&E until 3am whilst they tried to get my bp up a bit, 5 ltrs of fluid later and a lot of morphine I was still having contractions and fairly sure I hadn’t passed the baby. They gave me some tablets to help things along but they didn’t do a lot. They took me to theatre at 8am and I hadn’t passed the baby I was just bleeding out. I had to have a blood transfusion as my hb was 5 it should be between 11 and 13 in a woman.

Due to my muscles being starved of oxygen due to the blood loss I now ache from head to toe. I have huge bruises from where they were taking blood and shoving needles in me. All feels a little surreal. They say it’s going to take me a while to feel better.

So I guess it’s not normal to bleed so much and I wasn’t just making a fuss last time either. The treatment I had this time was so different. People were so lovely to me and supportive. Although I did have to go to hospital on my own I didn’t feel alone. A good friend was on duty in A&E and she looked after me. A few nurses on the ward remembered me from before it is about my 4th visit there with mc or uc. An old friend who is the Matron on surgical team came to see me too.

So it’s all over now. On the road to recovery slowly but surely. And less than a week until we get the keys to our new house. I hope a fairy comes and packs I have no idea how we are going to be ready in time for the 19th….

I never got to hold your hand but I hold you in my heart.

Be safe on your journey my darling, I will love you forever. Join your brothers and sisters and wait for me I will join you one day. I will never forget you or the joy you bought to me. Thank you for touching my life for this brief time, I love you and miss you my darling.

The pain is not too bad I am coping, the pain in my heart is worse. You can never get over the loss of your babies but you can survive it. I can look forward and there is hope for the future.

Hayley, Fran and Ollie I am sorry you never got to meet your brothers and sisters.

Ollies twin, Jamie, The Triplets, Fin and now Rosie missed, loved and never forgotten xxxxxxx

I have very dull achey painful back ache tonight. Some ache in my lower abdomen as well, had a little brown spotting earlier too nothing too much but deffinately a change in colour. I have taken some paracetamol now as the pressure in my lower back was quite bad, it seem worse when I am sitting down. Hopefully this will be the start of things happening. Every day I wonder will it be today and so far it hasn’t happened.

I am ready for the physical side of this to happen now. I have said goodbye to Rosie already and know she is in my heart and gone to a nicer place, just wish we had got to meet her first.

Hopefully getting closer to the time I can move on.