Living in a Disabled World

Today feels like it has been hard work.  I was so tired this morning and O and K decided to get up at the crack of sparrows.  I managed to sleep on and off until 0900 which sounds luxury normally but felt like I had only been asleep 5 minutes all night.

When I got up K had rung the doctors and had an appointment at 1118 about his back.  He was still finding it very difficult to move around and do anything.  The constant groaning and shouting in pain is hard to listen to.  I can understand how painful it must be but having to listen to his agony and try and keep O calm about it is so hard and tiring, I know that sounds selfish but I don’t feel I am ready to deal with this at the moment but have little choice.  Over 2 weeks K’s back has been this bad I am having to do a lot more than I normally do and I am meant to be resting and recovering myself which just hasn’t been possible.  I don’t mean to sound like a winging selfish cow but just one day where I don’t have to do anything and can focus on myself and get my head straight would be wonderful.

So off to the doctors we troop again for K to just be given more pain killers and not a lot else.  40 minute wait at the chemist meant an extra trip back later for me and O to pick up the prescription.  Trying to do all the meals and sort the house out on my own is taking its toll at the moment.  I am shattered and all I seem to be able to do tonight is sit and cry.  There doesn’t seem to be any end in sight for K’s back to get better and I have to go back to work in a little over a weeks time at the moment I don’t know how I can as K can’t look after O and I am shattered.  Not sure what the answer is but I need to find one.

I think some early nights and get myself a bit organised.  I hadn’t realised how much the housework had slipped over the last few months the house is a mess and it’s taking a lot of work to sort it out now.  I used to do a little every day but had handed over to K to do it as I have been working so much this year.  It seems very apparent now that K can’t cope with it all so I am going to have to try and do more myself.  I just pray to god that I find the energy from somewhere.  The possibility of having another baby seems to be slipping further and further away with each day that goes by.  If K doesn’t get better he won’t be able to look after a baby so I can go back to work, if I don’t work we have no money.  And that is before the physical side of making a baby is even considered or K even decided he wants to try again.

Well as you can see from my burbling tonight my head is a mess and I am tired.  Just to make things more interesting I have 5 mouth ulcers too so it looks like if this continues I might have to think about smoking again too which I hate with a passion but I can’t find any other cure for mouth ulcers that works.  Today I hate back ache, I hate Ulcerative Colitis and I hate feeling so tired.

Today we were up early ready for our trip to Diz’s house.  All started off well, loaded O and all the bits and pieces into the car.  K decided to fill up with petrol even though we had enough to get there and probably half way home again.  Then after the fill of diesel (not petrol cos that would break the car) he decided that he had to check the tyre pressure, on the 3rd tyre he let out a blood curdling scream that his leg had gone.  On closer inspection his leg was definately still there but he couldn’t stand up straight.  He went around to the drivers side and was leaning against the car in agony, then his trousers fell down (which is kind of funny now but at the time wasn’t, it just added to the pain and humiliation he was already feeling).  I jumped out the car and went around to help him, then O started crying as he was scared because Daddy was crying and in pain.  Who do I look after first!!  Then K tried to get in the drives seat, no idea why as he couldn’t walk he certainly wasn’t going to be able to drive.  Then he started shouting in pain even more, so I told him to get in the passenger seat, calmed O down and drove us all home again and it was only 0715 in the morning….

K insisted O and I still go to see Diz so reluctant to leave him but not having a lot of choice I drove to Diz’s with O and left K at home.  O and I had a lovely day with Diz and the 2 children, E is so dinky and lovely.  I caught O giving him eskimo kisses a number of times but he seemed to be gentle with him and know not to be too over the top.  I rang K a few times to make sure he was ok and at 1700 I rang again and that is when he confessed to not being able to get the milk out of the fridge so had black tea all day and not being able to get food out the fridge so had eaten biscuits and cakes all day to not be hungry.

After a lovely day O and I got home at 2100, and K was thankfully alright sat on the sofa, still in pain but none the worse for ware.  Lets hope tomorrow is slightly more “normal”.

We were woken up early this morning by the sound of a little girl in the back garden shouting, not sure if it was next door or the new family that have moved in, poor little thing didn’t sound very happy though.  Dozed back off to sleep until O came and jumped on me an hour later, K had already got up.

K rang the hospital at 0930 to see what time we could pick Fins ashes up and we were to be there between 11 and 12.  Of we went to the hospital, O went marching into the chapel up to the female Chaplain and introduced himself, her name was Mary.  She went off to fetch Eric and in turn he bought in Fins ashes and placed them on the altar.  O lit a candle for Fin which was slightly dangerous but he managed it with a bit of gentle guidance.  Eric was trying to say a few words of prayer but O was off and playing which didn’t kind of lend itself to the occasion.  We left the Chapel with K carrying the little white box with all that remains of Fin.  I started to feel quite upset, this is how I was bringing my baby home from the hospital, not in a car seat, in a baby grow all pink and chubby but in a small white box in a golden velvet bag.  Fins ashes are now by the side of my bed where they will stay until we scatter him in Wales.  We were given a certificate of cremation that we have to have in case we decide to place him in a cemetary on the envelope it said “name of deceased” and someone had written Samantha and then tipexed it out and written Baby, I guess a bit of me is in that box with Fin in a real sense and in a spiritual sense, I feel everytime I loose another baby a bit of me goes with them.

After picking up Fin K and I needed to go shopping so we went to Asda where I was reminded why I don’t go shopping with K very often.  Lets just say that I feel everything I pick up he critises and everything he picks up I see as uneccessary.  O was a good boy though and rode around in the trolley quite happily, he was getting tired towards the end.

We came home and I had a rest this afternoon as I felt totaly washed out.  I am sleeping ok at night now still having odd dreams but not about O anymore so that is ok as I can sleep.  I think the tiredness and lack of sleep of the last few weeks must be catching up with me.  The stomach cramps in the evening seem to have gone the last few nights too so physically my body must be getting back to normal.  I almost feel ready to go back to work, I know I am still delicate around the edges and I have to take it easy and be kind to myself but I think I am getting there.  The big Elephant in the room of course is do we try again, how do you raise that question and have a rational talk about it.  I think I already know how K feels but will he be willing to listen to how I feel?

Feel a bit of a mixed day today.  Haven’t been really upset but had a few tears on and off, feel a little bit down I guess.  I took the rest of the cut down treas from the back garden to the tip today.  The downside to this is they had been sat there for a year and were infested with spiders.  I shook them all out and lined the back of the car so that it didn’t make too much mess.  I wore gloves to put the trees and branches in the car and to off load them at the tip.  Just as we drove out of the tip K said “did you see that” in a very high pitched voice, “What!” I said, K said he saw a huge spider go down the back of O so I made him pull over.  I got O out of the car quickly and brushed him down no spider to be seen.  Made K take the car seat out and shake it still no spider.  Had a good look around and couldn’t see anything, all the time trying to make out to O that everything was normal and we were just checking his car seat as it was new.  Put O back in the car and as we drove off he said “was there a spider on my head Mummy?”…..  Fortunately no more spider for the rest of the day but it has made me feel itchy all day and horrid.

We drove out to Nether Stowey and to Stogursey today to see if we liked the areas, both are really nice and about a 20-30 min drive from my work.  There is a house to rent in Nether Stowey that looks really nice but you need to put in the cooker and carpets, curtains, etc yourself and it’s only on a 6 month lease which seems very odd for having to do everything yourself, not sure if K will phone up about it or not as it’s for rent from the National Trust which sounds like it might be a good landlord.  There are a couple of places in Stogursey, a bungalow which is a little out of our price range but looks very nice from the outside, it says it needs work doing on it.  There is a shared ownership property the other end of the village too which I have sent an application in for today.  The village looks ideal a small CofE school and a village church.  A few shops and a pub just the sort of place I want to live.  K said not to get my hopes up though as properties out there are very expensive but will keep my eye out anyway would be lovely to bring O up out there, near the sea too.

We are going to go and pick Fins ashes up tomorrow, then he will be safe at home with us.  I am worried that I will be very upset again next year when we scatter his ashes in Wales as it will be like loosing him again.  It will be nice to have him home for now.  I had an email from the bereavment midwife today as well she said to let her know when I am pregnant again.  Not sure what to say to that as I am not convinced K is going to try again.

Right I am going to have a shower to hopefully stop the itching and then an early night I think.  I have started a new book I finished my last one which was very good, it was called Hunting Unicorns and was written in 2 persons one of the people was dead which was very clever the way it was done.  All about the decline of the aristocracy was quite funny and sad.  Going to read Memoirs of a Geisha now, well have just started it and it’s nicely written the way it flows.

I never got around to blogging last night as I fell asleep on the sofa and didn’t wake up until gone midnight.  I had a very lazy day yesterday and rested.  I think this was a step forward that I could actually spend the day not doing a lot other than having a cuddle with O and reading a book.  I baked some rock cakes int he afternoon and cooked dinner.

I didn’t have the usual stomach ache in the evening either whether that was because I had rested or because my bleeding is now stopping I am not sure.  I am trying to keep a close eye on my UC I have one mouth ulcer at the moment which is painful and right where I bite on the inside of my cheek.  It would be nice to not have to smoke to keep “healthy”.  I haven’t smoked now for 5 months which is good and I feel so much better for it I hate smoking but it does seem to be the only thing that keeps the UC at bay for me, we will see how long I can go this time, the longer the better.  I sometimes wonder if I would even have UC if I had never smoked, maybe that is one thing I would edit out in my life.

I have had quite a productive day today, to help me cope with Fin’s passing I decided to set myself a task of clearing all the clutter out of my house.  This is the longest I have ever lived in one place normally I would have moved every 3 years or so.  As I haven’t moved we seem to have accumalated a lot of stuff that would have normally been ditched by now.  Also because I work full time I don’t get time to tidy up during the week, K keeps on top of the day to day housework but not the sorting out or out of the ordinary type cleaning, ok anything apart from hoovering or dusting doesn’t really get done.  So today I loaded up the car with a load of rubbish and bits and pieces from the garden and took it down the tip, there is one more load from the garden to take then it’s the turn of the loft.  I have also filled 4 bin bags with junk and out of date stuff from the cupboards, old shoes, old paint, you name it I chucked it.  We managed to find time to go  for a walk with O and the dog which was nice.  K’s back is still really bad and it’s affecting his arms now but hopefully a little exercise as long as he doesn’t over do it will help.

Last night K and I started watching a film called “Core Blimey” it is the story of Sid James and Barbara Windsor, quite an interesting film for anyone who grew up in the 70’s watching the carry on films.  At the end when Sid James dies there is a scene between Barbara Windsor and Kenneth Williams which really spoke to me.  Barbara Windsor describes what she thinks heaven is.  She thinks it’s a place where you get to run through your life and edit out the bits you didn’t like.  It made me think about the bits I would edit out, would I edit out my miscarriages.  You know I would edit out the bits where my babies died but I wouldn’t edit out my babies.  So even given the choice I wouldn’t erase Fin or any of the babies I have lost to just spare myself some pain, knowing them and knowing the hope that came with each pregnancy I will cherish those feelings for the rest of my life because surely to have lost them is better than to have never experienced them or known them at all.  In some way it bought me comfort to think about this, I am glad I got to know Fin I felt him move he had already started to form his personality, he had a routine of when he would move and when he slept, even though I lost him I wouldn’t change knowing him in the first place.Â

Today has been exhausting well today and yesterday really.  I drove H home at 2100 but the traffic was terrible on the way home and I didn’t get home until 2345.  When I got in I started to read a news article on a 27 year old lady in Egypt who had fertility treatment because she had 2 girls and wanted a boy, she had just given birth to 7 perfect babies weighing from 6lb to 3lb.  I was chatting to K about how it was such a miracle and made the mistake of saying it wasn’t fair she could have 7 babies to take home and I can’t even manage to have 1.  K got very angry so I went to bed and left him to it, I have no one else to express to how upset I am and it seems I am not even free to tell K anymore.  In the end didn’t get to sleep until gone 0100 so was shattered this morning and O jumped into bed at 0730 as usual.

Today has been quite exhausting, we saw the bereavment midwife this afternoon at 1400.  She was lovely and I felt very helpful.  K didn’t really say a lot to her and he said he had no questions to ask.  I found it good to have someone to voice my concerns to.  I asked her about the nightmares I have been having about O and how I feel really protective of him and she said she had read about this transference before and it was “normal” to feel this way and wasn’t uncommon.  She asked if I thought I would need to see my GP, I explained that I had Post Natal Depression in the past and had instigated anti depressants myself on several occasions and think I would recognise if I needed them again.  At the moment I feel even with tablets I will still be going through the process of grieving for Fin and tablets wouldn’t make it feel any easier.  If I felt like this still in a few months time then I would be concerned but 1 week after giving birth surely that’s not abnormal to feel upset and sad.  I also asked her about Fin after I left and she explained that Andrea and if it had been her would have had a huge responsibility to look after Fin and felt very honoured to be intrusted with such a precious gift so he would have been well looked after.  She is going to get me an appointment with Mr Fox to talk about where to go from here and also test results.  She is also going to get me booked in with the bereavment councillor and the baby loss group so I have people to discuss this with.  K and I need to decide once and for all whether we try again and after we get some results maybe we will get answers.  It might be that there is some sort of underlying chromosome problem between K and I or it might be that the first miscarriage was unlucky, the second because of triplets and the risk is higher and Fin just wasn’t a well baby.  Or we might not get any answers at all which is something different to have to cope with.  K doesn’t want to discuss the future at the moment and I can understand and respect that there is no rush.  I am not going to be physically well enough to try again for a few months but we can’t delay for years if we do decide to try again.  My biggest fear is I decide I definately want to try again and K decided he definately doesn’t want to try again.  Like I said to the midwife today I could put myself through this another 20 times if I knew 100% eventually I would have a baby but it’s seeing other people in the family go through it that makes it so hard.

I cried my way through the midwife being here but I felt it did help.  Afterwards I was so exhausted but I still needed to finish making the beds, sort dinner out and bath O.  I also asked about the pains in my tummy at night which I have right now she said it’s normal and means I have been overdoing it during the day.  I have been surprised about how this has made me feel physically this time, I have felt exhausted and in discomfort/pain which I wasn’t expecting.  I am not good at sitting doing nothing as it gives me too much time to think and dwell.  I will try and pace myself a bit more this week so that I heal.

Eric the Chaplain also rang late this afternoon to say that Fins ashes are with him and Fin is in the chapel of rest at the hospital.  I would have liked to have picked him up today and felt sad that I couldn’t as we didn’t have time and with it being bank holiday weekend the drive would have been hell.  But at least I know where he is now and he’s safe.

I didn’t sleep again last night, I keep having nightmares where I have to rescue O from somebody horrible, it’s never the same somebody but I have to always rescue him.  Then I wake up and can’t get back to sleep for ages.  I was hoping for a bit of a lie in this morning but O had other ideas was up at 0730 bouncing into the bedroom, K got up and went downstairs so the chance for anymore sleep was soon gone.

I had to sort out the spare room a bit as H wanted to come and see me which is nice.  Drove to Gloucester and we went to Cribbs Causeway for some lunch and a look around the shops.  The the builders at H’s house rang and need to get access early tomorrow morning so I am going to have to drive her home tonight.

A small package arrived for me today from K.  A robotic guinea pig.  At first it kind of upset me I know in a totally irrational way.  Was kind of a you can’t have a real one so have a robotic one and I wondered when Baby Annabell was going to turn up too.  I know it wasn’t meant in that way and I could tell K was trying to do the right thing as he looked quite hurt.

As the days go on it is getting harder to except how everything has ended.  I still want another child, I still yearn for another child.  K thinks even if we manage to have another one that the feeling won’t go away he thinks some women will just always want another one.  I feel I have come through so much to end it like this was it all a waste of time and just a lot of upset for nothing.  K says I can help other people with my experience and that everything happens for a reason, but do you know what I don’t want this to have been for other people, I know that sounds selfish but this was about me and my family.  Of course I don’t want anyone to go through the devastation of miscarriage and of course I will be there for anyone that needs support if I can give it but that can’t be why I have been put through all of this can it?

I still keep crying every now and then, I can’t stop myself.  Every evening I am still getting quite bad stomach ache.  I was hoping to speak to the midwife today but she rang when I was collecting H so that’s twice I have missed her now.  Tomorrow the bereavment midwife is coming to see me so maybe she will be able to help.

A week ago today I found out Fin had passed away.  In some ways it feels like another life time ago in other ways it’s so raw.  This time last week I was sat in the hospital on my own whilst K was in the car with a sleeping O being told that there was no heartbeat.

Have tried to keep busy again today.  Woke up at 0730 this morning again but at least I had slept all night which is a first for over a week.  The electrician turned up at 0830 to fix the hot water at last so I had to hide in the bedroom as I hadn’t got dressed or had a shower.

Have sorted out the rest of O’s clothes today been in the loft and retrieved the clothes from up there.  Popped out for a while to go to the post office to post K’s Dads Birthday present and my brothers mail to him in Australia, cost an arm and a leg.  Took O to the pet shop for a look around and priced up some things.  K is still refusing a guinea pig but it was giving me something to do and something to look forward to but now have priced everything can not go any further.  It’s frustrating needing something to occupy myself.  I can’t go back to work yet as my stomach pains are still quite bad and last night was the first night I have slept properly in ages.

Not sure what to do with myself.

3 MM’s sent me a lovely plant today it was very appropriate hopefully I will be able to keep it alive I am not the most green fingered person.  Going to see Diz next wednesday so that’s something to look forward to.  I need some things to look forward to, things to plan for in the future to help keep me going.  K wanted to go away in the caravan again this year but can’t give me any dates so I can’t book time off work so it’s probably not going to happen, that would have been something to look forward to.

I feel like my life is scraping along the bottom at the moment not sure which way is up.

P rang from work which was nice made me feel “normal” for a short amount of time whilst we chatted about work things and stress ruptures, ET’s all things from my world that I know about.  The world I feel I am in now seems alien and lonely.  At least that’s another day over nearly.

Change seems an appropriate song right now:

If I could hold you close
Like you were never gone
If I could hear your voice
You’d tell me to be strong

But sometimes
I just can’t
I just don’t understand
Why you had to go
Why you had to go
I guess I’ll never know

Ain’t it funny how you think
You’re gonna be OK
Till you remember things ain’t never
Gonna be the same again
same again
Ain’t it crazy how you think
You’ve got your whole life planned
Just to find that it was never ever
In your hand
In your hand
Change

If I could get to you
*I’d be there in a minute*
My world don’t make no sense
* Not* without you in it

And sometimes
I just *cry*
*can’t say i*
Don’t know why
Why’d you have to go?
Why’d you have to go?
And leave me here alone
And leave me here alone

Ain’t it funny how you think
You’re gonna be OK
Till you remember things ain’t never
Gonna be the same again
same again
Ain’t it crazy how you think
You’ve got your whole life planned
Just to find that it was never ever
In your hand
In your hand
Change

You don’t see it coming
Change
When the future comes knocking
It changed
It can make you or break you too
You’d just have to make it through
(You’d just have to make it through)

Ain’t it funny how you think
You’re gonna be OK
Till you remember things ain’t never
Gonna be the same again
The same again
Ain’t it crazy how you think
You’ve got your whole life planned
Just to find that it was never ever
In your hand
In your hand
Change

Change, change
Change, change

change

Today has been a horrid day.  I am not good at being at home all the time it frustrates and depresses me as I have nothing to do.  K can’t go anywhere at the moment due to his sciatica and the weather is pants, big granny pants.  It is more like the middle of October than the middle of August.

I didn’t sleep very well last night I went to bed with really bad stomach pains that radiated into my thighs and was very uncomfortable.  Reading the literature I was given by the hospital these stomach pains can go on for up to 2 weeks, they really are not pleasant.  I woke up several times and needed to go to the toilet every time so it took me a while to get back to sleep each time.  I then woke at 0730 and couldn’t get back to sleep at all.

When I lost the triplets last year and my first miscarriage the year before the mornings had been the worst time.  Waking up and remembering each morning that my babies had gone.  This time with Fin it’s not the same, I know he has gone constantly there isn’t a minute that goes by that I don’t feel his loss.  The mornings don’t seem to be the worst time just all the time.

I thought this morning that maybe getting another pet might help how I am feeling and maybe dampen some of the pain in some way.  I used to breed guinea pigs and thought that maybe having a guinea pig would create a diversion and help heal some of the pain.  I started to look around the internet to see what sort of things I would need to buy first it’s been a number of years since I looked after one.  K saw what I was doing and in no uncertain terms told me I could not have a guinea pig.  I tried to speak to him about it and he said no because of the dog, his dog.  So no diversion is going to happen there.

Today has been tough random episodes of crying that I can’t control, anger, depression, bitterness, lonliness and no escape from any of it just stuck here inside myself.

I started to sort through all of O’s clothes that I have kept since he was born.  There are loads of clothes and loads of toys that need to find a home.  It’s painful sorting through everything and knowing it is all going but I have no choice other than to get rid of it all, it’s just a constant reminder of my failing.

Excepting I am not going to have another baby is making the loss of Fin even harder.  Knowing I will never have another child to hold or bring up.  O will never have a little brother or sister to play with.  It really is very tiring having an only child, constantly wanting to be played with.  H and F always had each other to play with and I certainly don’t remember the constant demands for attention.

The pains in my stomach the ache in my heart are becoming unbearable burdens.  K thinks that I should see a doctor and get tablets but I don’t see how any doctor can cure what is wrong with me as there isn’t a cure.  I feel the anger start to bubble up too, wanting to hit something and having to control the emotion is hard.  Just wanting to strike out against the injustice and unfairness of everything that has happened.  I know I am 39 years old but there are women of 45 and older having perfectly healthy babies so why not me?