Living in a Disabled World

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.

So should I start with good news or bad news?

Ok good news. We have found the perfect house for us, I am so excited, 17 sleeps and we will be moved out of this horrid house that I have hated for the last 2 years. The new house is lovely, big gardens plenty of room can’t wait. The last week I have been cleaning and sorting out this house ready to start packing on Tuesday when the boxes arrive.

Bad news, I am still waiting to miscarry. So far nothing has happened. I have low back ache, stomach pains on and off but can’t tell if that’s due to UC or the miscarriage. I rang EPAC on Friday and they said it’s fine to just wait and it could be another week or two. I just want it over now this waiting is hard.

I was thinking today that because I have had 4 miscarriages now I feel guilty. Guilty for not being able to have a baby. Guilty for making other people uncomfortable because they don’t know how to react. Guilty for just being me and trying. Why is that? Why should I feel guilty for wanting a baby. Why should it be something bad?

I have been staring at the picture of my new neice on Facebook. Marvelling at how perfect she is how she managed to be here. How is it that some people can do it and others not. I don’t mean in a jealous way as I am not jealous but in a just how does it happen way and how can it go wrong way. What is it about me that just doesn’t seem to be able to make a healthy baby anymore. I guess I probably know the answer to that. K and I are that bit older and just that little bit probably makes a difference. Maybe due to my ulcerative colitis and the medicines I have had to take at one time or another it has damaged my eggs in some way. There doesn’t seem to be anyone else in my family that has exactly the same problem. As my mother often reminds me “we don’t have anything like that in our family”.

I am still waiting at the moment. Have had some brown spotting on and off so it can’t be that far away now. Probably in the next week or so. It’s making me very restless. As much as I didn’t want to lose my baby again I just want this all over now so I can move on and look at new things in my life. Stop dwelling on this phase of my life.

We saw a house yesterday we really liked. I know K has his heart set on it. I really like it too and could see us living there and the things we could do. It would change our standard of life for the better. It would be so nice for O to grow up there. I could have my much wanted vegtable patch. I know moving house would be hard work but once it was done that would be it we could settle down as the people have no intention of selling the property so we would be there as long as we wanted to be. The house comes with some quirky conditions which I quite like the thought of. There is a small jack russell type dog that lives in a kennel in the garden and they have asked if we would feed it. The old gentleman that lived in the house wants to be able to go down to his orchard and do bits and pieces but that sounds quite nice to have someone pop in from time to time. It would be quite a responsibility looking after the house the owners obviously grew up in but would be so nice for us to do. As much as I like it and would love to live there I also can’t hope too much because if we don’t get it, then it will feel like another blow and I am not sure I can take anymore at the moment.

I have my suspicions there is something going on at work I am not being told about. I have emailed my boss today and asked him directly. I don’t know if he will answer but I would prefer to know sooner rather than later even though I am signed off sick. For one I do not want to commit to this lovely home if we should get it if I don’t know if I am going to have a stable job or not.

As they say I guess all these things come out in the wash in the end and no amount of chewing it all over helps. I am pottering around the house doing a few chores that I haven’t done in ages. Cleaned out the cutlery draw and going to go and sort our wardrobe out. I know we are going to move soon even if it’s not to this house we like so may as well make the most of my time at home and start sorting bits and pieces out.

You know the saying when one door closes another door opens, the door is still ajar at the moment. I am amazingly calm, is that normal or have I lost it now as well? It’s hard to know what you are meant to do at a time like this, so I am just doing what I think is best for me whether right or wrong I don’t know. I have asked my gp to sign me off for 2 weeks I might not have even miscarried by then but at least I don’t have to think about work at all in that time. I will pop into work to take my sick note and then leave it until I am strong enough. With my other miscarriages I have always rushed back to work to try and get back to “normal”. I feel this time I need to be at home and be ready to face the world before returning. It’s safe here with K and O.

K made me laugh today, I wanted to nip to Sainsbury to get some sanitary products for the inevitable, he didn’t want to come which was fine and O wanted to stay at home and do cutting and sticking. K asked me how long I would be and I said I don’t know maybe an hour, I might even pop somewhere else if I feel like it. He said “I don’t want you going off somewhere where I don’t know where you are in case something happens”. Not sure what he thinks will happen that I would be stood in Sainsbury and suddenly double over in pain like they do on the movies. I think it will take a while yet. I have no bleeding or spotting and Rosie only passed away in the last few days it is going to take a few weeks I think. It’s strangely calming though knowing she is still with me and not gone yet until I am more prepared. The midwife seemed quite surprised I had no bleeding as there was some blood around the sack as well which she called an “incedental finding”. It might explain some of the prickling type pains I have had on and off.

I still have quite sore boobs and still feel a bit queasy on and off trying to ignore the symptoms as I am tired as well, I know they are real symptoms as the placenta is still working at the moment but they aren’t real symptoms either as Rosie isn’t there anymore.

I have decided it is time to move on though. It feels right to close this chapter now on my life on all our lives. I can’t do this again, there are no guarentees next time it might work or next time it might not but the price is too high to pay. I know after Fin I felt at first I didn’t want to try again but I still had a spark of hope and though given the odds it just couldn’t happen again. I was wrong.

My heart is sad and will be for a long time but I can’t take anymore layers of sadness and with the deat of each baby there is a layer of sadness added. O’s twin, the triplets, Jamie, Fin and now Rosie all in my heart all wanted very much and all gone. Sometimes in life things aren’t fair and that is just the way it is, you can’t change it, you can’t fight it all you can do is survive it. There are worse things happening to other people, I am safe, I have 3 children and I am loved, that is what is important.