Star gazing

When I was a little girl my mum and I would sit on the swing seat in the garden, look at the stars and sing "Would you like to swing on a star" together which is something I always enjoyed so much I would dream of doing with my own daughter if I ever had one which, of course, thanks to the grace of God I did!

So this one is for my mum and Amelia-Rose...

Star gazing

Splashes of silver
Spray across the sky
And fade into non existence.
We'll talk of adventures
As the stars dance above us
And a blanket of darkness surrounds us
And in this moment


I have never felt so loved,
Nor loved as much as I do now, 

Your breath swirls into mist
Your spoken words are frozen onto my heart
And with our hands entwined
I'll plead to the universe 

"Please never let us part"

But you have growing to do, 
And I'm your mother, 
Here to nurture, 
Not to smother, 

So just for now, 
For this moment, 
In this place, 
As the air tickles our skin, 
And the night pulls us in, 

The bats play above us, 
And the world spins on in spite of us, 

Lets
      Just 
            Love 



Happy 2017 everyone! I hope and pray you have a truly blessed year! 

For the lost boys.

I must admit this last year has been really really hard and I've been terrible at actually being honest about how lonely, isolated and terrified I have been. My faith in God, that this isn't how it's meant to be, that I will endure any suffering thrown my way because I have been blessed against all the odds with the most beautiful daughter who I never thought I would have is what has got me through and I have prayed 'my prayer', which goes a little something like this, many many many times

Lord use me as a vessel of your light, shine through me my Lord, my God, let the words that come to me be your words, my voice is your voice, whatever happens Lord, I believe in you"

The way I have emotionally and mentally made it through the year is to write poetry but I've not wanted to share those words because I am a scardy-cat and have been  too afraid what people will think of it but I am determined that 2017 is going to be OUR year, 2016 is almost behind us and a new year, a new beginning and a new life lay before us and I am so freaking excited! I believe it can only get better.

In trying to find courage I have sworn I will grow a pair and share my poetry on my blog. Poetry I hope in 2017 will become songs!  I don't believe they are my words, I am just blessed that they came to me when they did. 

Today I'd like to share a poem I wrote for all the lost souls, all the babies we loved but never got to hold. All those lives we loved so much and still do but don't get to see. When I say 'we' I mean women everywhere, not Tony and I! Although we are included in the 'we' I don't just mean the 2 of us. 


Take a breath, pause a moment, 
Blow the seeds of the dandelion, 
Towards the light of the stars, 
Where your tears are felt, 
And your cries are heard, 
Where your baby sleeps in peace, 

His eyes are in the stars, 
His hands hold the daises, 
His shadow is on the sun, 
He is gone but never forgotten, 
We knew him not at all, 
But you cradled him in peace and calm, 
So, in motherhood stand tall, 

The sun rises and the sunsets
It shows the colour of his laugh, 
He grows everyday in you, 
Carry him along the path. 
And never let that love go, 
Only you could know
How much it hurts
To love a soul
You'll never get to hold. 

Heaven is a beautiful place, 
Waiting for the human race, 
It's ok to let it go, 
A soul finds peace in heaven we know, 
Never feel ashamed, 
To speak his name, 
Shout it loud, 
Stand tall and proud. 



Until tomorrow, I hope if you're reading this you have a peaceful night, if you live with pain I pray your spirit can endure it and it won't break you down. You are so much stronger then you think you are! 

I wrote this on the 15th December but I think now is the time to share it. My husband is many wonderful things but he is not a question mark! 

On Sunday we went to the garden centre to see the beautiful displays, meet Father Christmas and most exciting to me was meeting another EDS lady Gemma. Who is just totally wonderful. We had a really good time, the pain got a bit crazy but being with Tony and Amelia-Rose did the great job of being a reason to ‘put on a brave face’ I know I don’t have to with them but it’s good, it gives you something to concentrate on rather then the pain. When we got home  there was a Christmas Card. What a delight! Our first hand delivered card of the season! Then I hear a scoff and “Well that’s charming isn’t it’” from Tony “What?” I ask and he hands me the card… To Chloe Amelia-Rose and ?” It was kind of these people to send a card and I think building each other up instead of tearing each other down and so I thank them for their Christmas cheer but ? ? Surely Chloe and family To a couple & Amelia-Rose From us to you but ?

My husband is not a ? He is my comedian who can make me laugh 5 minutes before I’m due to go down for a fairly big operation, he makes me laugh on the bleakest most frustrating hardest days he makes me laugh when a joint is subluxed and I really am in agony. Don’t ask me how he just does.

He is my taxi driver who drives me to my various Dr and hospital appointments. Back in February when I was in hospital an hour away (if the traffic was good) for a month He would drive to me, spend the day with me helping me wash, talking, reading, laughing, trying to concentrate on the amazing out pouring of love from people who wrote so many get well cards. Then he would drive the hour home have a quick turn around from school then drive BACK to the hospital and eventually after the evening visit off he would go again to do it all over again the next day. For 30 days. 

But why? That seems excessive, was all that travelling really worth it? The simple answer is yes, yes it absolutely is because he is a Father too. The dash back in an hour to almost just turn around again was to ensure I saw my daughter everyday. He is phenomenal with Amelia-Rosea and the noise of them playing and laughing does quite literally warm my heart.

He’s like a journalist writing a auto biography about my life as he sits next to me and takes mental notes, sometimes written notes on what going on, where we are and where we are headed.

He is my guide, telling me which way is up when you’re so tossed around and tumbled up so up looks down, down looks up, left is right and right is left. When I stand up to transfer his are the hands that wrap around me as we cuddle for a moment and his is the voice that tells me “I’ve got you”

He is my alarm clock, if I’ve slept and I’m not awake first he is the person who kindly and gently wakes me up and already has my morning medication ready to take.

He’s my council and my comforter, there are times when life feels overwhelming, we all have them and he’s always there.

He is both my personal assistant and my security guard. Trying to make coffee dates for me with my friends if he sees them when nobody’s text to ask if I would like to go out or called round for a cuppa for a while but also knowing how to politely move us along if we’re out towards the end of the outing and he knows I just need to get home!

He is the cleaner, washer maid and chef, delivery service, cheer leader and lover,  he is my knight in shining armour suprising me with flowers and telling me his song “for us”  is ED Sheeren’s thinking out loud because the 1^st two lines “When your legs don’t work like they use to before and I can’t sweep you off of your feet”

My husband is my fulltime carer and like many people who care full time for a loved one he wears many different hats and I could not be more grateful and I remind myself to make sure he knows that. My husband is many things but one thing he is not is a question mark.

Oh my goodness I am sorry it's been so long!

Hello friends! I wrote this about a month ago and things have changed a lot again since then but I didn't post this at the time and as it's part of our journey I am going to post it now.

I am so sorry I haven't written for so long. Please do click on the youtube link to bring you up to date. If you do all will become clear as to why I have been quiet for so long! https://youtu.be/M2iLz1_WhaQ

For this entry I am going to write about where we are now as appose to what got us here because I'm not sure how long I will be able to keep this up for! I have a cannula right in the bend of my elbow which I have to try to keep straight because my veins are terrible at the moment, we had to try in my  right arm and feet today (the cannula in my left arm blew over night so I've got a fabulous bruise!) before we had to settle on the crook of the elbow in my right arm, I am going to be hooked up to some more fluids tomorrow so if I can keep the vein from blowing by not bending my arm too much that's just what I have to do!

Today was the first day that I got to wake up at home, go into hospital to be hydrated and come home again. It was so much better then staying in over night. I know when I have the op I have no choice about coming home at night and I want to keep my hospital stays to an absolute minimum in the lead up to the surgery. I didn't really have a choice Thursday night and poor Amelia-Rose cried herself to sleep which of course had me in tears when I found out!

I will fully admit the getting there and getting back is horrendous, we don't have a wheelchair upstairs because mine is too heavy and huge to get up the stairs safely but it means Tony is having to carry me from the top of the stairs to the bedroom and although he just picks me up fairly easily *considering I am the tallest* but things like that are those silly things that get to me because he isn't lifting me because we are messing around he is doing it because he HAS to and that suddenly makes me feel a bit erm, at a loss with my dignity.

I would say to my fellow sufferer "Dignity is never taken away from you when someone is acting out of love" and yet I am human and therefore do not always practise what I preach when my own securities and self doubts whisper in my ear.  I'm working on it. At least I am aware that it happens and can acknowledge it is something I need to work on.

This is as far as I got with this post but like I say I think it's important to post these drafts because it's all part of our journey. 

An update from Chloe!

Dear Friends, 

I'd like to start by saying a HUGE thank you to everyone who has donated to our cause or shared the page. I am quite blown away by the names that have been popping up! Up to and including the lady who allowed me to clean her already spotless house so I could earn my Brownie badge!! Thank you to them for supporting me in two vitally important life events. The first of course being receiving my hard earned Brownie badge! 

I feel so incredibly blessed that everyone is being so kind by sharing the page and often writing the most beautiful few paragraphs to explain why they are asking people to contribute. 

Amelia-Rose only has a week of her school holidays left and I cannot believe how quickly it has flown  by. I knew going into the holiday that it would go quickly but I had no idea it would be this fast!! 

I have fought very hard to be involved in as much as physically possible with Amelia-Rose during the holidays as I was determined not to miss out. My goodness though it has been tough. I have experienced for the first time the feeling of ''I'm not sure if this is worth it''. Of course the answer is ''it absolutely was'' but there have been times when I have been sat somewhere cold and wet with my joints aching and tummy hurting watching this that or the other thinking ''Ooooh, I'm not sure, I could be at home in the warm!" 

I think I need to learn it's ok not to do everything. No parent does everything. Most children only have one parent with them most the summer as the other is working so it is ok for me to miss things. For me now not joining in is a failure. I guess because I'm not doing something because I can't not because I don't want to which makes it a whole different ball game. 

It is hard as a disabled parent to let go of what you can't do. You get so use to adapting everything all the time, making small changes here and there that when you face something that you just cannot do it can feel like a wave of frustration, anger, anxiety and sadness washes over you. It's the ultimate defeat. 


What I need is to plan ahead so I make the decision not to do something and I don't feel as if it is being taken away from me. 

Tony would tell you I am battling with myself at the moment. I keep talking like I have any control what so ever over my illness. For instance the other day in bed I declared that I was going to make two chocolate cakes (one for the milkman for going easy on us with our bill and giving us time to pay it off and one for my family who were arriving for a week's holiday here) go down to our allotment and tidy Amelia-Rose's bedroom. 

First of all though I needed to have a bath. Tony ran my bath whilst I got myself ready. It is getting harder to get into the bath but the bath board helps. The bottom of our bath is extremely slippery though which is lethal. I've slipped and hurt myself many times. This is the perfect example of ways money from go fund me could help make adaptions around the house that you used to be able to get on prescription from the occupational therapists but now can't as the funding was cut.  

Last year I was told I would be given a trolley which would solve the problem of how once I have cooked dinner I can get it to the table if Tony isn't around (because 9 times out of 10 he is down the doctors sorting prescriptions for me!!) the standard ones they give people you push like a normal trolley and are not designed to weight bare. That trolley would become my walking aid so would need to never tip up. Impossible expectations for the old trolleys.  

I was so excited when I was told about it but it turned out they actually didn't have any in storage that became walking aids and I couldn't get the funding for a custom made one. *sigh* So we are back to me having to serve up and hobble along very unsteady with hot food in one hand trying to lean on my crutch and holding the other crutch. Easy it is not. 

By the time I got into the bath I was absolutely shattered. I couldn't wash myself because my arms ached too badly. I lay there exhausted watching each of my goals for the day float away with the steam. I needed help washing which is a huge point of sensitivity for me. I know I am at the point now that I need help with my personal care (getting washed and dressed) but I don't want Tony to help me because for me that crosses over the line too far from husband to carer but he is my carer now, he left work to become my full time carer therefore I need to accept his help. 

I don't want him emptying my bag or doing my catheters when I am too weak to get out of bed (which has happened recently) but similarly I don't think any of us could cope with someone from outside coming in to help us.

We do need help though. Without doubt. This is something I have learned in the past few weeks is that we need a lot more outside help then we get and we need to accept that we cannot do it all. I expect it is much harder for Tony because he is a traditional man. He protects his girls and he provides for them. Having already lost the ability to provide financially because of my illness I think doing it all alone has been Tony's way of showing the world he could. 

Now though we need help. We need people to come in and do a deep clean with us. On the surface the house is often very tidy but beneath the surface and it's chaos which seriously stresses me out! 

Admitting you need help is huge though isn't it? Is there really anything personally bigger to do then ask for help?

Health wise thing aren't fantastic. I now use disposable catheters as my bladder has ceased working but they leave me sore and an infection I had was horrible. This sounds bizarre but I keep being shocked by how awful I feel! Literally I will wake up or do something and feel so rubbish and it shocks me. It also shocks me how little I can do. 

On an increasing basis things that I did all the time before or did often I now can't do. Typing this has taken me 5 attempts because mentally I can't sit for long and process things. My hands would also not allow for me to type for so long without punishment. 

When I think back to where I was this time last year I was much better then I am now and then I had even more ''stuff'' inside me and was more physically able then I am now. Last year my health declined to the point where I couldn't even lift my head off the pillow for long. I certainly couldn't get out of bed. I suppose my fear is that when I became that unwell I was coming from a better place then I am now and if I were to dip to the same degree goodness knows how bad I would be! I hope that makes sense! It's the kind of irrational thing that goes on in my mind! 

I keep having dreams where I get offered my surgery date as the NHS decide to step in and do the surgery in the private hospital just to get it done! I always dream up until the point where the receptionist checks us in. We go up to the counter and she tells us there has been a mistake and she doesn't know anything about me. It's horrible! I wake up steaming hot with butterflies in my tummy and anxiety ripping through my chest and down my arm so it feels like I am having a heart attack.

People look at me when I am out and about and assume I am so much better then I am. I always like to do my hair and make up before I go out but it does means people are deceived by how well I am.  They don't need to look far beneath the surface to see. 

For the first time ever I have been able to accept that I am indeed suffering. I am someone who suffers. I always thought that was something to be ashamed of, that I should hide it encase people said I was making it up or Dr's wouldn't believe me but really I am. At the moment I am at a time in my life and I am suffering. I guess I just have to try to wear that badge with a little honour. I am facing my suffering. It doesn't make me less of a mum or less of an anything if people take the time to understand that for me x y and z it just not possible because I am not well enough. 

It's a funny thing being sick and disabled. You would think being one or the other was enough but not for my body! Haha! People can see my disability. They cannot see my illness. That is invisible. That is the reason I started my youtube channel and my blog. To raise awareness of this disease for other men and woman and to show the world what this sick disabled woman could do. I wanted to inspire young women to believe in themselves and go out in the world knowing no matter what illness or disability they have they still will always have something to contribute to the world. 

I am sorry that in this up date I have jumped from subject to subject. I have always had a passion for writing but at the moment due to my 'brain fog' or 'mental clouding' my standard of writing has disappeared down the toilet as I have tried to write for my blog! I have 3 unfinished actually very good blog posts! Please forgive my poorer standard of writing! I will share the others with you soon. Including the story of TJ Tabitha-Jane the miscarriage we experienced 4 years after trying and 2 weeks before I first went on the crutches. We are finally ready to share that story. 


Many blessing 
Chloe 

What is it like to live with Ehlers Danlos Syndrome

Today I've decided to link my youtube channel instead of writing because my cursor keeps highlighting and deleting what I have written which is driving me mad! Just writing this has taken 4 attempts and I had written 3 paragraphs but lost it all!! To be honest the videos were so spontaneous I think I've said it all. I was surprised by how emotional I became but I have chosen to share them because I want to encourage other sufferers to not feel ashamed or embarrassed by their conditions. Especially the hard times.

It's a frightening thing to be so vulnerable on youtube but if these videos help just one person feel less isolated, alone and misunderstood then making myself vulnerable is worth it.

I dream of creating a youtube community where people can support and understand each other and inspire one another to carry on the fight for a better quality of life despite their illness.


https://youtu.be/S60424Y3NEo

https://youtu.be/gkplmyyy-Y8


https://youtu.be/Zz0bUrA1BoY


https://youtu.be/CUJ86u-UhiM

The joy of the benefits system.

Well, to say these past two weeks have been stressful would be a huge understatement.... 

It has been tougher then tough.

 

First came the letter telling me that I had attended a medical exam and the assessor had deemed me fit to work and as a result my claim for employment support allowance had stopped and I was being taken out the system. Despite the fact that each time they've requested a medical certificate I have indeed sent in a medical certificate I only every received one payment which was back in April. Since then Tony and I have been surviving on my disability living allowance and his carer's allowance (his being £62.00 a week and mine just about covering our monthly bills, not exactly what it is designed for but needs must if we didn't want to be £300 over drawn every month with no electric) I have always vowed that my blog and youtube channel will be honest, an honest account of what it is like to live with chronic disease and disability and as much as it pains me to write this and as embarrassed I am to admit it things have been so hard most of our food we have gotten from the local food bank. I can't believe that things have gotten that tough but they have. I cannot put into words the guilt I carry around about that. 

When you are genuinely unwell and reduced to living on benefits because you have to rather then you want to the whole system makes you feel like a social outcast and that you should be utterly ashamed of yourself and when I sit and really think about the guilt I carry around I have to remind myself that the only thing that I am truly guilty of is having an incurable disease. I try to talk to myself (I know that sounds a bit mad) as if I was trying to comfort someone else in my shoes. Then I try to listen. 

                                                                         

Anyway, back to my ESA claim. I filled in their 22 page health questionnaire and handed it in at my local job centre, not an easy task when you have crippling hand pain due to dodgy ligaments and early on set arthritis but I did it none the less. I'm so glad I went to all that trouble when now they have shut down my claim and can't carry the questionnaire over to the new claim. I can hear you asking how I could ever fail a health exam with my extended and complex health needs and disabiliaty but here's the thing. I never did attend a medical. I was never even invited to attend a medical. When I rang the helpline (and eventually got to talk to someone after being on hold for 37 minutes) they admitted that it was a clerical error their end but their was 'nothing they could do' and I would have to make a whole new claim which could take up to 3 months to process. 

Again with the painful honesty, I cried down the phone to the poor woman on the other end and when I hung up I sobbed into my hands. Really sobbed. 

The following day I planned my day to totally dedicate it to making a new claim again, I dug out all the relevant forms and letters that I knew I needed to give them (hospital addresses etc). Then the post arrived with a letter that would wind me and bring more stressed out tears. 

I received a letter from my local council telling me that the department for work and pensions who are in charge of the ESA system had been in touch with them and told them that I had been cleared for work and as a result they were suspending our claim for housing and council tax benefit. Honestly the stress and anxiety that letter caused and is still causing is enough to drive anybody insane. We are now down not only the ESA but also my housing and council tax leaving us with full rent and rates to pay until this mess gets sorted out. 

Once I calmed down I made the call to the ESA people to put in a new claim.  I was on hold for 46 minutes this time and when I did eventually get through we got halfway through the new claim when the woman's system crashed and she vowed to ring me back within 10 minutes. 5 hours later and I rang them again. After being on hold this time for 25 minutes a message came over to tell me they were now closed and to call again tomorrow (or something along those lines) 

So now we go into the third day. I tried ringing my council but after being on hold for what felt like forever I decided to hang up and call the ESA line again as that felt most important. This time thank goodness I did get through and managed to get all the way through the claim. 


Although the ESA is a joint claim for Tony and I as I am technically the one unable to work I am the one who has to make all the phone calls and fill out all the forms. How can this possibly be right when you're dealing with a benefit that is given to people who are unable to work through disability or long term illness? Are our lives not stressful enough? Do we already not have to strive harder then anyone else to not quite ever be up to par? Why would anybody thing it is a good idea to put so much more stress on people who are in situations they would do anything to get out of? 


I am sorry that this is such a moany blog and I am grateful that I live in a country that has a benefits system but my word, the system is so screwed up. It preys on the sick and the weak. It makes everything as difficult as possible as if to turn them off from trying. 

It makes me feel sick to my stomach to think about it all, it really does. At the moment we are officially up the creak without a paddle. The little savings we did have are all gone and until the 'rapid reclaim form' comes through so we can reapply for housing and council tax benefits we are getting in debt all the time with our housing association and the council tax. I have a deep faith and I do believe that this is all in God's hands but sometimes I wish he would show us in our present time that it will all work out in the end. Perhaps he could give us just a little view of the future, just a slither. 

I wish I had the capacity to start something amazing to challenge the way that people who need benefits are treated. Something that would make people sit up and listen, to show the world how 'the others' are treated. I just do not have it in me, I'm too exhausted. I feel like I am fighting infection after infection at the moment on top of all of my normal symptoms (many of which are worsening all the time, the ones associated with my bowel anyway) and I am just exhausted. 

We first applied for these benefits back in January and here we are July and we have only every had one payment and that was 3 months ago! I daren't think who else is going through this. People who haven't got the support of family and friends, it must be hellish. 

Amelia-Rose is of course completely unaware of any of this, Tony and I have squeezed the belt so tight neither of us can barely breathe but we (as of yet) have managed to pay for her tap lessons and her swimming lessons and still give her her £3 a week pocket money. For all of those children whose families have no choice but to let on how tight things are the knowledge of something so grown up in such a small mind but be beyond daunting. Children shouldn't have to live through this. For goodness sake it's 2015,how the government STILL not have a FAIR system that WORKS and is effective? How can clerical errors be allowed to cause a family to go through months and months with no income? 

I always think it's funny how if you owe these people money they will hound you day in day out but if they owe you money it's like going 3 rounds with Mike Tyson to get it back... if you can at all!! 

Financial stress, I believe, is one of the worst you can face, there is no hiding from being broke, it surrounds you and eats away at you. I know I shouldn't cry over money but the stress of all of this has reduced me to tears more times then I can count and hundreds of thousands of families go through it every single day. Thousands of families who are guilty of nothing but being unable to work due to poor health or disability.

These things are not going to resolve themselves if we rely purely on our government to do so. We need to come together as a society to care for one another and look out for one another. To keep an eye on our friends and neighbours and step forward to help out if we can. People are capable of greatness whether it's individually or as a collective and we have to search ourselves for that seed that can be planted and become a huge and towering shelter for those in need. 

I hope one day when my health allows it and we are settled ourselves I can do those things that I have just written about. I volunteer at the food bank and was one of the three people that originally came up with concept of helping the community but I want to do more then that, I want to create a something that people can turn to in their hour of need. Even if it is just a support group for people who are dealing with the benefits system in our country I want to help. I don't want anybody to experience what we are living through at the moment. I wouldn't wish this on anyone. Something needs to be done.