I may look find on the outside, but that's not how I feel.

Stomach churning, pain sweeping through my body, vision blurred, heart racing, nausea setting in and cramp not far behind. 

But I look fine, so how can anything be wrong?
I can smile for photographs do everything must be fine? There can't be anything wrong when she smiles so brightly?

Wrong. So so wrong.

I spent the morning crying my heart out, out of pain and frustration that I just can't do ANYTHING I want to do for myself. I cried and cried, trying to pull myself together but I just couldn't stop the tears. I cried in hurt that I could once ride a horse and now I can't even get myself into a chair. I cried for the loss of my social life, I cried because I feel deserted, forgotten and alone. I cried because I feel guilty about all the pressure I put on my family. I cried because I was ANGRY, because this IS NOT FAIR.

But I dried the tears, got dressed and put on my make up and pushed myself to go out for the afternoon. I had a lovely time but my problems don't just go away because I want to have a family day out. I grabbed my camera and focused on taking photos. Trying to distract myself from the pain.

Now I am back in bed, wanting to just get the pain out of my body, just GET IT OUT. I cannot cope with it all, constantly with no let up. I just wish people could see I put on a brave face, and try to act strong, when I am crumbling inside. I am crashing and burning whilst trying to maintain a shell that is a complete disguise of my inner self.

I cannot walk.
I cannot eat.
(or drink)
I am steroids that if I stopped I could go into adrenal crisis.
I have a bowel that doesn't work on it's own.
I have a heart that beats too fast.
I have a constant pain that is all over my body.
(all the time)
I am ALWAYS exhausted.

I put on a brave face.
I do not wallow in self pity and feel sorry for myself.
I just get on with it!

But sometimes I feel people need to be aware I am still, very poorly.

Please, know just because I try so hard to put a smile on my face, it does not mean I am any where near okay.

Thanks guys, for your understanding.

xxx

Tiredness is just becoming overwhelming

Okay, I will admit being at home is really tough. Not just for me but for Mum too. We are both chronic pain and fatigue sufferers so whilst trying to make it here, there and everywhere is just getting ridiculous. Mum had poorly eyes and ear right now giving her a lot of added pain and I am really struggling with a dry mouth (which is driving me mad) and stomach cramps/nausea on top of everything else. I think people forget Mum only had a stroke last year and now she is my primary carer! 

We have no carers right now as the company kept sending males which is totally wrong for a girl aged nineteen who needs help washing and dressing. My social worker is trying to find a new care company which is proving difficult. All we need if just a bit of help from two experienced females that are actually allowed to do what we need such as give me my medication, set up feed, personal care etc... Mum and I are both at the too of our frustration levels. 

The think is, it makes us so tired doing all the appointments/errands/daily tasks, that we are left with no energy to do the things we enjoy. It leaves us feeling miserable which is just not fair because if we had help right now it wouldn't be happening! Grrr. 

On a positive note we just took Samson and Percy to the vets for a health check and vaccinations and they turn out to be Summer and Delilah! Two girls! We had a little giggle. They now come in for cuddles every day, pets are great therapy. 

Love to all x x x

This is my confession post.

I'm exhausted, I'm in agony, I am struggling to cope with the fact I do something one day and it means I can't move from my bed the next. I cannot drink or eat with my family or go for cocktails with friends. I am struggling with the fact I don't have a shower to sit under hot water and ease my pain or wash my hair. I don't even have a toilet to use. It's embarrassing, it makes me fuming. Fuming that I can't just get up and walk, because I can't do that either. I just want to have my life back and I have to live with the fact that isn't going to happen any time soon- if ever, every single day. I'm falling asleep as I type this. All I ever do is sleep. 

Change is petrifying right now, because so far all change has made things worse or had complications and I'm just sick of it. 

This post is the honest truth of how I'm feeling, as I lie here barely able to lift my neck because it hurts so much. 

I'm just so so tired right now. 

Amazing bank holiday!

Last night we had an amazing home and Binton social club, who welcomed me with open arms and got into the fundraising spirit! Bobby and Miles dedicated me some great songs that they played, we met some wonderful people and raised £300! 

This is the first fundraising event I have been part of myself which meant so much to me. But the generosity didn't stop there. The members of the club would like to hold another fundraising show for me too! I am just so overwhelmed by the kindness of people that were once strangers, but are certainly now friends. I feel so lucky that I live in a network of villages that work together so well as a community. 

I even managed to get in a game of pool, and I have to say I didn't do too badly! It will take some getting used to but Fred was great at wheeling me around and Jess and I certainly had an entertaining game! (Fred and I also did a rather cool wheelie!) 

Today I will be spending the day in bed trying to shake off the exhaustion and pain that follows an incredibly busy evening. But I try not to let it defeat me,and remember although I am in agony now I did have a really nice time! I do wonder though how long I will actually manage to stay awake today. 

Thanks everyone! I love you! 

Much needed update!

Hi all,

I have a confession. I am finding blogging REALLY tough lately. It takes concentration that I just don't have right now. But I will keep trying to work through the 'brain fog' that is caused by the illnesses I have, to keep you updated. You may get a few more updates from Mum, so I don't feel like I am under pressure.

SO, Bristol?! AMAZING! I loved spending time with my family sooooo much. I loved not having to navigate round the house. I loved being able to feel the fresh air, to explore, to spend quality time with my brother (who has been absolutely amazing to me), to not have to worry about appointments and all things clinical for a whole weekend, to see uncle Ryan and the girls, then uncle Steve and auntie Anna, to shop and to SWIM! That was my greatest achievement.

It was exhausting. It was painful. There was tears and screams in the night because of the pain. There were times I was grumpy because I was just so exhausted. But I have an understanding family who just ignore me when I'm like that.

I've come home and I'm certainly paying the price. The pain is just so intense, it's a pain I cannot describe. The exhaustion isn't just tiredness, it's mental and physical exhaustion that lands me in bed with not a single gram of energy to do anything at all. I have just had a full nights sleep and I'm already forcing my eyes to stay open!

It was so nice to get home to my animals and have lots of cuddles. And we had a surprise....

Eight babies! Well done Dolly! (I think I am the only one that is pleased, well Mum is secretly pleased too hehe) It's so nice because every time we have had babies before I have gone into hospital and not been able to see them grow up. I can't wait to see these guys on their journey!

Today Dominic my fantastic architect is coming to take all the measurement he needs to start drawing the plans for my new purpose built apartment! I am soooo excited that things actually seem to be moving forward with the project.  I am also going down to Binton social club who have kindly offered to donate some of their proceeds to my cause! There really is some kind people in this world. I am not sure how long I will last there but I need to at least show my face. I will continue to take things a day at a time because "slow and steady wins the race"

Thanks To Adara Diva and Tilly Rose for raising £210 for my cause, you're great!

Loads of love, Chloe xxxx

Bristol!

Well, after much debate and discussion as a family we have decided to come away for the weekend. Now I know many of you will be thinking "but you've only just come out of hospital?!" But we have our reasons! The thing is I have been in hospital the whole of the summer holidays, and we have had no holidays. We have spent no time as a family because Mum and I have always been at the hospital and we need to be a four again. It's actually better for us at the hotel because it has wheelchair access. And I have a suitable space for my needs, something we actually don't have at home. 

Bristol is close in case we need to come home and it's a nice hotel so I can just chill in the room and sleep whenever I need to, whilst Joshua can play in the pool. I sort of felt the need to explain myself and the reasons behind our time away. 

So, we are going on a road trip....

And I have one excited brother! 

My first night at home was hard, I am struggling with the mattress that I have been given and already have a sore for ring on my left foot. If I am honest I woke up screaming in agony because my legs hurt so much. Luckily mum was close by to turn me, as I am unable to do that on my own. 

There is alot to sort out. But after the last four months there is nothing we cannot handle :) 

The hardest part is not over, but it's intact about to begin

Well the time has come to say goodbye to hospital and come home. People may think the hardest part of my journey is over- but it's intact just about to begin. 

You see, in hospital there is a safety net of healthcare professionals all around you. There is someone to hand at the end of a call bell 24/7. If you are worried, there is someone to give reassurance, if you are sick or in pain there is someone to help, day and night. 

But at home that disappears,myes I will still have carers, but they won't be here constantly. There is no doctor sitting close by or a nurse to dispense medication. It's us as a family that will now face the battles and a majority of the time that will be a lone. 

Just because I am out of hospital, putting on make up and smiling brightly, it doesn't mean everything is better- everything is far from it. I am still very very unwell, I am constantly in pain and exhausted. I have no movement in my legs at all. I cannot eat or drink and I am running my feed so slowly it gives me none of the energy I so desperately need. 

Our house is just not suitable for my needs which desperately needs to change. We cannot have me sleeping in the lounge forever, we cannot have me using the shower at my mans house and having no toilet facilities at home. It's just not good enough. 

This is why we need my 'house' building so desperately, I just need space to live comfortably. I need independence and a space to call my own.