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. 

HOME!

Well, What a day full of a roller coaster of emotions.

We had a big team meeting today. In my small hospital room was an occupational therapist, physio, doctor, nurse, social worker, Mum and I! At first I wasn't going to attend, but when they said it was being help in my room I thought they better had.

Everyone was surprisingly proactive in getting me what I need (finally) to at least make do at home for now. We are awaiting a hoisting system, narrower wheelchair and ramps to be delivered home just to make our lives that tad easier, as I know looking after me and making sure I am comfortable is unfortunately hard enough. 

I will be having a substantial care package and two carers will be at my home regularly to check I am okay and help with basic needs. Then the district nurse will also be involved in the background. 

This all means, after nearly 4 long months....

I AM GOING HOME :D

On Wednesday, I will be leaving the hospital and going back home where I belong. I am scared but SO excited. 

Thanks everyone,

Time for the next chapter in my journey! xx

A huge thank you!

There are some good people in this world!

Well hello all..... What a day

Today we were blessed to meet Two wonderful people; Dominic Skinner and his beautiful girl friend Lilly.  Dominic is an architect, he has offered his expertise to make my new home a reality.  His generosity and kindness have literally blown me away.

Domino and Lilly spent their Sunday morning visiting us at home, talking about the process of the build and talking through everything, I actually felt a weight being lifted and could breathe a sigh of relief, because the project now feels real, it's not just a dream anymore - but a plan of action.

Thank you so much to Dom and Lilly.

Secondly on bank holiday Monday, Hinton social club are holding a BBQ and live music where my wristbands will be available, they have kindly agreed to make a donation to my funding.  A big thank you to Binton social club.

BINTON SOCIAL CLUB - BANK HOLIDAY MONDAY - 4pm - BBQ AND LIVE MUSIC

PLEASE JOIN US A DONATION TO FUNDING  CHLOE IS KINDLY BEING MADE FROM THE PROCEEDS.  WRISTBANDS WILL BE AVAILABLE ON THE DAY.

WE'll BE THERE.

Right now I am just overwhelmed by the kindness of those that were once strangers, but are now most definitely friends. I am so grateful for the generosity of those that have supported me, I just can't thank everyone enough.

Our family have never been the best at accepting help, but this has touched our hearts so much, we are amazed and have certainly shed many tears over the kindness of others.

Health wise,I am feeling different day by day! some days the pain hits me to an agonising level! but I'm learning how to push through the barriers as I know it's not going away any time soon.  I must just breathe! Do what I can and then at least I can say I've been trying my best.  Some days the exhaustion is too much and I sleep many hours a day, which feels like such a waste, but I have to listen to my body.  These are days when I just break down because I just want my legs to move, just an inch, I concentrates hard as can but it's just not happening. 

There are days I feel so sick i'd do anything to turn off my feed, but I know this would play havoc with my Addison's and blood sugars let alone my general health.  There are times I would do anything just to drink a glass of water!  It's all too much sometimes but I am strong.  I AM STRONG - is what I have to keep telling myself.  Pain and exhaustion make that incredibly difficult though - 

So some some days I just have to say:  

'it's ok not to be okay'.

Hi all!

Quick update from me! I have been home today and I'm absolutely exhausted. I slept at home for ages because all this is new and very tiring.... 

(Thanks mum!)

But here's a photo of me at home: 

Typical me seeing how high my bed could go! 

I am so grateful for all the support I am stil recovering. I'm in so much pain and so exhausted all the time that it's hard to say thank you to people individually but I do appreciate everything! 

Tomorrow there is a big meeting discussing care for when I go home and I am praying and hoping that it will be soon, we can't take much longer in hospital. 

I went to have my new wheelchair fitted which is priced extremely high and yet more money to find but it's specifically what I need, we make things happen and I remain calm. 

Love to all! 

Chloe xxx

Update from Mum!

Well what an exciting, but exhausting couple of days we've had.  A complete turn around, of course Chloe's pain and illnesses haven't gone away (that would be a miracle) but her strength and fight have returned.  Her will to get home, to make the most of her situation.

Yesterday we had our first venture into the big outdoor, beyond the gates to the big house (hospital), home for a few hours, who would have thought this would have drained every ounce of energy, but just to see chloe on her bed in the family room was worth it.    She snuggled her baby rabbits, laughed and joked, then we noticed the time....We even had a few minutes to call in to see Phil, his eyes lit up to see his girls xx. Ooops, back to Coventry.

Today we went to fosse park Leicester, fitting for a wheelchair.... Wow, I hadn't realised the calculations, trying out, measuring, blah blah, just to get the right chair, then the cost £1400, that was a wake up call, but if that's what's needed.

Back through the gates we came, exhausted once again, but reality that there is hope, there is light and we are on the way to being homeward bound. 

The weekend is here and we have 2 yes 2 home leaves of 7 hours aaarrrgghh!  Is this really happening, are we really only steps from getting home?

Our continued thanks to all that are fund raising, supporting, selling Chloe's wristbands, just sending a message to let us know they care, Thank you so so much .

Suze xxxx

Time to Update!

Hi All,

Well, this morning started swimmingly- quite literally!
I woke up 'swimming' in a pool of feed, I was covered! How on earth I managed to sleep through being absolutely soaked I do not know. That's Chronic Fatigue for you. THEN we (the nurses mainly) tried to change the connector on my jej tube and....broke it. Luckily the nutrition nurses G & J came to save the day with a new kind of connection:

I thought I would start with this:

This morning I decided " I AM GOING TO DO THIS!"

I got in the shower, Mum did all the hard work...but. I was up- I washed my hair, I put on real clothes and make up, I went outside and I did it! (Thanks Mum!)

Right now my health is so unpredictable, one minute I feel stable and the next the pain kicks in, or the sickness, or the upset tummy, I feel disorientated and just very unwell. It coincides with having my medication and when my small bowel has to handle more fluid. It's hard because now I am starting to get nervous about taking my medication- which shouldn't be the case, but I know how it sometimes makes me feel.

But the big news....I am now assigned a social worker and on Monday there is a big meeting discussing the plans to GET ME HOME! Yes! Home! That place people usually live without all the beeping machines and constant chatter! That place where the walls are filled with pictures and the feeling is warm. Oh home, how I have missed you.

AND before that I should be having Day leave to get me used to getting into the 'swing of things' and making sure this discharge does NOT fail!

Oh, I am just so excited. But this is the hardest part. I have to remember I am still very unwell, and need to take things steadily. I need to remember how much my body has been through and the time it is going to take to repair. This is such a huge step, so needs to be planned to the finest detail by numerous people. I may not be able to walk, or eat/drink...but I am hopeful for my future- which I know is still so bright! Because there IS good in the world, there is Happiness and there IS beauty!

Thanks all,

Chloe xxx

Update

Hello all, 

I never thought I'd still be lying in a hospital bed wondering what else could possibly go wrong...but I am. 

What a night! Something's wrong, my feed has had to be stopped, I'm back on IV fluids and my new jejunostomy tube cannot be used. But the tests I desperately need to see what's going on cannot be done until tomorrow morning. Hospitals really do seem to shut down at weekends. 

It's a bit graphic but last night I went for a wee. It was mainly my feed?! Obviously this should stay neatly in my small bowel. This could mean bad complications, but like everything we won't find out until tomorrow. 

I am in horrendous pain, on top of my usual horrendous pain, because of this I am on a morphine pump I can control myself and IV paracetamol, which works very well along side other analgesia. 

I am very tired physically and a bit emotionally worn down, which I think anyone would be in my situation. Infact I am falling asleep as I write this, so I will stop there. 

Love to all,

Chloe xxx

The tube is in use!

This morning bought another big allergic reaction which they now think is doe to the steroid injections. Unfortunately the steroids aren't something that can be stopped but they can now be crushed and put down the jej tube rather the IV form down my picc line which seemed to be causing the difficulty. 

The jejunostomy tube is now in use....

It's making me very bloated and adding to the pain but I need to continue on with it. 

The last problem is that I haven't opened my bowels since surgery, despite having picolax- a bowel prep. Dr. S said this is a very important part of receiving from surgery on the small bowel, as the bowel often goes to sleep which we don't want to happen, as my stomach and large bowel already don't work. There is still plenty of time for the picolax to work so we shall see! 

I have a drain in my nose which is a very thick tube that goes into my stomach and drains the contents so I feel less sick, it's pretty disgusting but really helps. 

Thank you for keeping in touch everyone, and continuing to support me on my journey,

Chloe xxx

Post-surgery update

It has bought awful allergic reactions, agonising pain to the point where it hurts too much to cry, but I've made it so far.

Thank you so much for your ongoing support, I can't thank you all enough xx 

Too much sleep!

I try to write my blog consistently, but there is something getting in the way...sleep! 

I am sleeping all the time, and I mean 15 hours a day. I can wake up, look at the clock and fall straight back to sleep regardless of the time. But this sleep is not refreshing, nor energising. I wake up feeling exhausted and like I have just run a marathon. 

I can't function enough to do simple things just because I am so so tired. Chronic fatigue syndrome severely affects quality of life, it's not just a matter of being a little bit tired! 

Love Chloe xxx

Family time is so precious!

Last night bought hours of broken sleep, I was in pain to a new level and was apparently crying out whilst sleeping :( 

Yesterday it was so lovely to see my family though and all be in one place. Here's a few photos from our time together! 

Seeing the last picture, it dawned on me how poorly I have actually got, especially compared to last time I took pictures on the same bench: 

I'd do anything to be able to move my legs like that again. 

I am still waiting to see the doctors and everything, so will update again after I do. Today is transfer day for the junior doctors so everything is very busy! 

Chloe xxx

One thing after another!

Friday.  Well what a week we've had, there's been lots of lows, fustration, tears and waiting!

The doctors have been puzzled, ordered plenty of complex tests, even more puzzle by some of the results, what started as complex has led to a combination of both chronic and acute illness.  

The addition of a (not so typical) Addisons Disease into the mix has caused many tears, but outdoing everything is the constant pain that I have to live with and may have to live with for ever more, this is something I'm not sure I can cope with long term. I am now on steroids to try and treat it, which brings promblems in themselves. Both Mum and the Doctor have noticed my face had started to become puffy over the past few days which they need to keep an eye on. 

My hair is falling out in huge amounts which is worrying/upsetting me so much, maybe it's nothing more than a vitamin deficiency, neverteless its worrying me and the worrying about can't be helping!

I've seen the OT's this afternoon, I can't beging to explain the exhausting pain of being 'dragged' from the bed onto a banana board onto a chair using a handling belt round my middle, everyone saying 'well done', whats good about it though? I should be able to do this, not it being a major achievement! with two people pushing and shoving.

I know the doctors are doing everything they can, so why does it feel like nothings being done? I appreciate that its a waiting game, but the summer and all this lovely weather will be over before i've had a chace to get outside and enjoy it, I'm also missing my animals the baby rabbits will be fully grown before I get to see them!

I think thats everything for now, Dr T is back for another chat, wonder what news he has?... or is it take more blood? (update: bloods it was!)