It's been a while, but I am still here and still fighting!

What has been going on? I am going to try and be as straight to the point as possible in an attempt to give everyone an informative update, whilst doing my best to write something more 'Chloe style' tomorrow! So...

Feeding
My TPN (nutrition that goes straight into my blood stream) has increased in volume whilst giving me the same amount of calories in an attempt to combat my extremely low blood pressure that occurs at night time. I have been having regular blood pressures of 60's/30's which causes great concern to everyone as it becomes extremely hard to wake me. They began to give me bags of fluid on rapid infusion which was bringing my blood pressure up- so as a precaution I am now given some extra fluid to try and combat the symptoms before they happen. Although this doesn't always work, and I end up having rapid fluid infusions anyway.

I am still continuing to try my hardest to get back to tolerating enteral feeding. This is where I am fed liquid nutrition that goes straight into the tube surgically placed in my bowel. Although it has improved since I last updated, I still have a very long way to go with no idea how to get there. I am reaching my limits already, so how on earth am I supposed to deal with almost ten times as much as I am having already?! I have a plan to attempt next week to get there, as sometimes I find it easier to follow a strict plan, rather that 'going with the flow', because really- why would I put myself through the pain and nausea/sickness of feeds if I have nothing pushing me to do so? I have made the plan myself, so it feels somewhat realistic and not totally impossible. The feed I now have is completely different to the generic one I was on before. Instead it is a specialised feed that is designed for people with severe allergies and motility problems. Somehow it is partially digested when it is made, so my body has to do a lot less work. It also shouldn't cause so many Mast Cell reactions in my gut as it is extremely 'gentle' and known to be good for severe allergies. I must admit it has helped me go further with the volume, but I really do feel like I have hit a brick wall now.

Because of the amount I am being sick currently I have had a temporary drainage tube put into my stomach via my nose. If this works the plan is to then give me a surgically placed PEG that will be another tube in my tummy, to drain my stomach. This is a huge relief, as you know being sick itself makes you feel awful.

Chronic Fatigue
My sleep pattern is all over the place! Sometimes I am exhausted yet unable to sleep, whilst other times (like I did this week) I sleep for a ridiculous amount of hours, the record being 28-30 hours! I literally woke up to go to the toilet in this time and about an hour lying in bed, but still I was unable to stay awake. This is incredibly debilitating for me, as it is impossible to make any concrete plans as I never know what I will be like the next day. It is like there is a blanket over my brain making everything muffled so hard to understand and stones on my eyelids weighing them down. I never wake up feeling refreshed and sometimes it is hard to know when to go to sleep because realistically I am always tired so if I listened to my body I would never be awake!

Pain
I am currently on very little pain relief for my physical pain and although I don't often show it, I am in great discomfort most of the time, from head to toe. I would like this to be sorted but unfortunately think it will be something that will have to wait until I get home. The pain management team I have seen here have been incredibly useless to be honest, and I would be better of sorting it out myself rather than asking for their advice! It is like my joints are burning and my muscles/nerves are being ripped and torn constantly. As much as I want to do things, I can only reach the limits my pain sets which on some days is very low, although others can be a little better. Sometimes I wonder if I will ever be 'pain free'?

Mobility
No changes here, I am still totally reliant on my wheelchair, and due to my wrists being very temperamental at times I am struggling to transfer alone as well. I am wearing splints on my wrists and ankles to try and combat the problems my joints are causing. Although the wrist splints help me when I am self propelling my chair, they don't help me to transfer (when I need them most) so I still need assistance. I still have a slight loss of sensation in my bottom half and I usual feel more pain rather than someones touch. I am getting good at maneuvers and wheelies though! Sometimes you have to make fun out of a dark situation.

Mood
Right now I am finding it difficult to ever see an end to all this and that is what I find gets me down. I want to be at home so badly, but also know just how much everybody else wants it too.That makes me feel even worse because I just can't see how I am ever going to achieve what needs to be done, it is no way realistic in my eyes. I am still finding my anxiety levels are quite high, but I am a lot more confident spending time on my own at the hospital, knowing Mum is still on the end of the phone if I need her. I am spending a lot of time working on different projects to keep my mind active, as it is when I have too much spare time on my hands that my thoughts get the better of me.

Once again I am extremely tired and cannot keep my eyes open. Time for sleep and then I will continue!

So much love to you all xx

Sorry for my absence!

I firstly want to apologise for the fact that I have been absent from my blog for so long. It is very frustrating for me also because there is so many things I want to be doing but when pain and exhaustion is present at such a high level I have no choice but to sleep and rest in an attempt to recharge my batteries! I have decided that from now on if I don't feel able to update my blog I will get Mum to step in more often to fill you guys in on how I am doing (although I haven't made mum aware of this plan yet haha!) 

I am so thankful I was able to go to Phils surprise birthday party, thank you to all those who looked after me! 

I am struggling with my joint pain right now, and my shoulder is proving problematic as it is dislocating with little movement. We have put this down to the fact that I am using my arms more than I have been pushing myself in my chair, my shoulder has been problematic for a long time. I am also very 'jerky' at the moment, my legs especially are participating in a lot of involuntary movement. This is worse at night time/when I am asleep meaning my sleep is very rarely restful...vicious cycle! 

The first time I put make up on in a long time! 

For the past few days I have had a very very slow feed set up to run through my jej tube, the feeding tube in my stomach. Currently this is extremely painful and I am only tolerating 2.5 hours at most. Since starting this I have also started vomiting again which doesn't help the situation! Today I am hoping to change anti-sickness medication in hopes I can combat the sickness which would make my life a little easier. I have also seen the nutrition team who help with complex nutrition cases, they are going to try and raise my hydration levels as being a bit dehydrated may be contributing to my exhaustion levels. 

Despite all this I have woken up this morning in a positive frame of mind. I have been blessed with the opportunity to spend some time off the ward recently and whilst doing this I have made a few observations. The leaves on the trees right now are beautiful shades of reds, oranges, browns and even purples at times. They are falling to the ground creating pools of colour where ever they land. Autumn is my favourite season by far, but now I realise I cannot do some of the things I used to love...crunching leaves under my feet and walking the dogs early in the morning whilst the grass is still crunchy with frost. I realise now that I cannot do those thing, but there is plenty of things I CAN still do. I can still experience the colours, as I am blessed with sight. I can still hear the birds tweeting chorus early in the morning as I am blessed with hearing. I can still take a deep breath of the fresh, cold air as I am blessed with the ability to breathe. We often forget the things we take for granted are what others may be asking for in prayer. 

A picture I took last autumn, hopefully I will be able to take many more soon :) 

Then came my second thought...where did summer go? My experience of summer this year was sitting in a stuffy room with the (pretty rubbish) air conditioning full blast. It was the few moment I spent sitting on the grass before having to come in because I needed medication of pain relief. My experience of summer this year was not the best but atleast I didn't have to deal with awful hayfever! (I secretly prefer the colder months anyway) 

I am VERY excited about Christmas. I think this is because it's something I have control of planning and organising in a very out of control situation. It is a time I know my family will be together which is not the case right now and it is a time filled with laughter and love, which is always nice! So if you have any great wrapping, decorating or present ideas and any yummy Christmas recipes please do share, I would love to hear them! 

Christmas last year- this is roughly when I began to feel more unwell. 

I think that is all for now! I will leave you with the henna design I did on Mum's foot the other evening....

Who Am I?

Who Am I?

I am a daughter, a sister, a cousin, a granddaughter and niece. I am a friend, a confider and a crutch to many. But that is who I am to other people, this is about me.

WHO AM I?

I am Chloe!

I love animals- their unique personalities, their fur (or lack of it), dependence on me for food, water and love, watching them grow and develop, teaching them tricks, taking photos and documenting their lives. I love the way an animal never judges you, never hurts your feelings and will always listen. I believe animals have a way of understanding human emotion and feel the need to support and love through heartache and illness.

I love my family- I love the way we unite through the difficult times, laugh through the fun times, share memories for a lifetime and work together as one. I love that each member of my family plays a different role in my life, whether that be my confider, my comforter, my friend, my role model and so many more! I take comfort from the fact I know my family will never leave me, despite how much we have all been through. They will never leave me to do anything alone. I love how close we are compared to other families, sharing our concerns and working through them, not hiding them with anger or resentment. I love that I have two families that work in different ways, and that I get positives out of them both. I love that I get double the presents on my birthday because my family is so huge! I love that I have family in different places in the world, which has given me the opportunity to travel.  

I love art- whether this be art I create or art I appreciate, I love it in every form. I love exploring new craft techniques and perfecting old ones, I adore gathering together as many materials as possible and sitting down to see where a project will take me. I love that there is no right or wrong in art, it is simply a matter of judgement and opinion. I love that art is such a broad spectrum, there is always something new to explore! I love that so many things fall under the category of ‘art’, but my favourite is creating art in a practical form. I appreciate other peoples work and talent, but I would much rather be getting stuck into it myself. I love that there is no boundaries and no limits to what you can create. With art there literally is no stopping me, I will create something out of scraps and ends, because I believe that little things can be just as magnificent and big things. I love that art can document things just as well as words. A picture can in fact speak thousands of words at once, sometimes emotion comes screaming from the piece and other times it lingers softly in the background making you work harder to try and find out what it is trying to say.

I love the natural world- walking barefoot across the sand, muddy wellies in the forest, splashing in the lake, laughing in the sun and dancing in the rain. I love how nature is so raw and so perfect before it is touched by mankind. Frosty mornings, bright summer nights, crunchy leaves in all different shades, blossoming trees, the smell of cut grass, the sound of a trickling stream. It is all just so beautiful! I would never change living in the countryside for the world. The city is the right place for some people I am sure, but never for me! I love waking up in the morning knowing that I am surrounded by beautiful nature. To me nature is the foundation of life.

I love God- This is something I am yet to mention on my blog much, but a huge huge part of my life. I am blessed to have a wonderful relationship with my Heavenly Father. I am blessed to have a firm connected relationship with him. To have the resources to read his word and to communicate with him through prayer. I am blessed with the knowledge and comfort that Jesus knows my every pain, trial and heartache but can also share with me my happiest moments. I am so lucky to have a wonderful support network of like-minded friends, as we nurture each other’s beliefs and grow as people spiritually and emotionally. I am so lucky to have a church locally I can attend, a house of God filled with his spirit and refreshing thoughts of praise and life.

I love lists, structure and routine- If you walked into my bedroom you would think I am a messy person. I hate throwing things away because I always see a second use in things, I suppose I am good for the environment, but not so much the state of our house! But my mess to me is organised. Other people may not know where things are but I absolutely do (most of the time). I know where to find a piece of lace, some cardboard, a pebble or a bead. I can put my finger on the skirt I wore Tuesday last week (unless my loving Mummy has put it in the washing!) Structure and routine brings me comfort because I know exactly what is going on and when, it lessens anxiety and brings out the confidence in my stride. I do not like it when plans go wrong.

I love ‘countryside clothing’- Which is NOT H&M, New look, Topshop or River Island. It is Joules, Barbour, Dubarry and Musto! This doesn't make me posh, or a snob. This is what I like, it is what I feel comfortable and confident in. I like to take pride in my appearance. Just because I don’t like leaving the house without make up- it doesn't make me vein. I just like to look my best, I like to take time and effort in how I dress and look. I like to make investments into ‘timeless’ pieces of clothing, rather than spending money all the time on the latest trend.

I love capturing precious moments in a photograph, whether that be something significant like a family members wedding or something as simple and spontaneous as a lady bird on a leaf.

I love children, I love the way their chubby legs kick high in the air as they desperately try to roll over for the first time. I love the gargles that come from their little mouths with giggles soon to follow. I love the way they totter from one piece of furniture to another and how everyone cheers as their faces light up the room. I love how children’s brains are like a sponge and they soak up all the information surrounding them, their ability to learn so quickly fascinates me. I love how you can nurture a child right from day one. I adore the way that they come out with such quirky sayings and comments that bring tears of laughter to your eyes.

I love the elderly, I love that this generation has done SO much for us, and now it is our turn to return the favour and give them the treatment and respect they deserve. I love that the elderly have stories to tell from years ago that you couldn't possibly imagine. They cook the best cakes and give the best hugs. I love that older people are so much wiser and a great to turn to for knowledge and advice. I love the cheeky side older people have- showing glimpses into what they were like as youths. I think it is fascinating how the body changes through the years, from skin so smooth to a face full of wrinkles! But those wrinkles are like war wounds, they show how much a person has smiled or frowned in their lifetime, I think a hard worker all round has a good set of wrinkles, why would you want to get rid of something that almost tells a story? That is just my opinion.

I love helping others, this is a big one for me. I will do anything in my power to help someone else in need. Whether that be emotionally, spiritually, physically or practically. Helping others makes me feel GOOD! Helping others makes me feel like I have purpose and that I am doing my part to make this world a better place. Helping others should be part of everyone’s day to day regime in my opinion. What use would we be if everyone was just ‘take take take’ with nothing to give? It would be a pretty dismal society. This one I am passionate about. GIVE MORE THAN YOU RECEIVE. Be realistic! If you have time, money, energy, good health, patience, skills or knowledge then why not let others use some of that too? If we worked together and everyone gave more than they received, think how pleasant the world would be? I will always try to stick to that one. I love hearing the words “thank you so much for your help” or “you've really helped me I really appreciate it”. That is a gift in itself!

So, that is a bit about ME, Chloe Alice, not my illness, not my obstacles, but the things I love and adore and the things that make me, me.  

Yesterdays thoughts and Todays update...

Sunday 05/10/14

Today it is hard to find reasons to be strong, but that doesn’t mean I give up- that means I fight even harder to find them.

I have slept most the day, waking up for medication to settle my symptoms and to keep me comfortable. There is no doctors on a Sunday, therefore anxiety is slightly less than usual and I am able to close my mind without six million thoughts attacking me at once.

I feel like I may be entering another ‘flare up’ of exhaustion. I am tired all the time, but these ‘flare ups’ as I call them are more than just tiredness. They are physically and emotionally feeling unable to do anything at all because there is not a single ounce of energy left inside your body. They are the times when you have no choice but to just sleep, because the exhaustion makes it too hard to lift your head from the pillow. It makes it too hard to roll over alone.

At the same time you battle the chronic pain that lingers in every corner of your body, you wish that there was a way to push it to the back of your mind, but in reality it is ALL you can think about because the pain is so intense you want to scream- if only you had the energy. Instead I wimper in my sleep. Mum is often woken by my crying whilst sleeping, it is obvious the pain doesn’t even go away at rest.

Today has been one of ‘those’ days. The days where I hate the world, I hate my life, I hate everything. I soon have to snap myself out of that thinking because it gets me absolutely nowhere but feeling worse mentally. Sleep at least brings my mind rest, even if my body doesn’t.

I am struggling with my new medication regime, it puts me through added pain on top of my normal pain first thing in the morning and last thing at night. I have to keep telling myself “the pain will ease Chloe, the pain will ease.” But that doesn’t stop the tears, the sickness, or the pain at that moment, it doesn’t stop that period of distress. I am just getting so worn out by it all and I will admit that. I will admit this is not easy. Is being poorly for anyone, ever easy?!

I am praying that tomorrow brings tolerance and peace in my heart. I am seeing my consultant and I really hope we can be proactive together, with Mum. I am trying my hardest I just hope she recognises that. I get so scared I am letting people down.

Ultimately this isn’t about my consultant, yes I care what she thinks but this is about me but ultimately this about Me. Me and my loved ones and the ones that love me. But ultimately, Me. That is not me being self-centred or selfish, it is me putting myself first. Something I don’t do very often and should definitely do more.

I am not angry at the life I have been given. Sometimes I get upset, sometimes I get frustrated, sometimes I cry and sometimes I shout. But I know I have been given these challenges because I am strong enough to deal with them, because I have the power to learn from them and so I can help others in the future. The world doesn’t just need people with academic ability. It needs people with life experience, with wisdom and advice. The world needs people with knowledge fuelled empathy and sympathy. I would love to be healthy, but I know that I am lucky to be alive and that this is going to make me an incredibly strong, resilient person in the long run. I have the most amazing family and friends that some people are not blessed with. I am incredibly lucky in that respect!

Health wise I am going into the week with an open mind. With hope that the new medication is going to help in the ways the doctors hope and the ultimate goal of getting back into a health state where I am able to live supported at home. Obviously this isn’t all going to happen in a week, but the foundations can be set and glimmers of those plans can be seen and I would love to be blessed with that.

Monday 06/10/14

This morning I slept through seeing the doctors, but I do not mind because I trust my Mum and her judgement in asking the right questions and relaying back everything I need to know. My consultant is happy with how I am doing, but I can't help feel disheartened. She is never here when I have to take my medication down my JEJ tube and I don't think she quite appreciates quite how much is hurts and how poorly it makes me. I can understand why, but sometimes I wish she was HERE when I was going through it so she could see the agony and sickness and discomfort with her own two eyes. That way she might not be be so pushy- for want of a better word. 

She desperately wants to try and get me off IV medication and TPN and back to feeding and medication using my JEJ tube. Okay it wouldn't be overnight but I just don't see how this is going to happen? I can barely get 30mls down my JEJ a day when I would be needing more that 30mls and HOUR to be using my JEJ tube effectively. It would mean constant agony, which is so so exhausting and I just don't see how it will work. Sometimes I feel like you just have to go along with it and show them it doesn't work, because at least then I can say I tried. Because I want nothing more than to keep going. I don't give up- that's not the sort of person I am! 

My allergic reactions have improved leaps and bounds which shows that this medication is on the right track, I just hope and pray it helps calm my gut down also like the doctors think it will. I am the first person to admit that patience is NOT my strong point, and I need a heck of a lot of it right now! 

The building project is bubbling along in the background, I should have more news on that this week to share with you all! Congratulations Dominic and Lily (my architect and his partner) on the birth of your little boy Felix, he is perfect! Dominic is getting stuck into being a Daddy right now, yet is still so kindly sorting out plans for me, I feel truly blessed. 

I have managed to get off the ward and to the faith room a few times which brings me great comfort and peace in my heart and mind. It's amazing how the hospital is so loud and chaotic yet you walk into that special place and there is just an overwhelming silence that peacefully fills the room. No beeping machines, no dull TV's, no chatter, no footsteps. Just beautifully decorated rooms for different cultures and a wonderful multi cultural central room with intricate modern stain glass. I often sit and write in the prayer book, It has become a routine for me to see how the 'regular' prayer book writers are doing and praying for their needs as well as my own. 

That is all for now folks, My eyes are closing again. 

All my love, 

Chloe xx

"You're going to be here for a very long time"

Is she trying to scare me?
Is she just being honest?

Does she care?
Does she believe me?

Is she another person that is going to blame the present on the past?
Before my questions could be answered she was gone.

That was the consultant, the big boss of the gastroenterology team.

And to be honest? I didn't know what to make of her. She woke me up which is something I find hard anyway as I go into such a deep sleep It takes me a little while to wake up. Then she started talking straight away. I tried to take in what she was saying, but I just couldn't! My brain hurt.

I felt like she was doubting me. "Your case is very rare you know?" "You certainly are complicated." I felt like saying "just because an illness is rare, it doesn't mean it doesn't happen to people." But I bit my tongue, smiled politely and in my head desperately willed her to leave.

Luckily she didn't stay long. I just wish I'd of had someone with me, to check that I'm not over reacting in the situation. To stick up for me and protect me. Words hurt just a much as actions sometimes! Sometimes when it is your health and your life on the line, you need a mediator. Communicating is hard hard work.

Health wise nothing has changed. I have started having some medication down my JEJ and oh dear it is the most painful thing I have had to deal with. But I need to stick with it, because if it helps me in the long run it is totally worth it! It is totally worth the pain if it means I can be stable enough to go home again :)

Home is ultimately where I want to be. I don't care about anything else and it is all I can think about right now. I want my comfort and the safety of my animals. I want my family to be whole again! I know it will happen, just maybe not for a while. Patience has never been a strong point of mine!

Grandma is here with me today, we are making a scrapbook :) I love a bit of cutting and sticking to take my mind off everything! Then I think I will do some painting and just keep 'doing'. Whilst i'm 'doing' i'm not thinking!

Thanks guys

Chloe xxx

A message from mum .........

Well it's the end of another week and what a week it's been!  Harrowing, distressing, unbelievable, just a few words that immediately pop into my head.  Chloe has been her usual high spirited self but has had to endure possibly the most difficult times, with the start of a new medicine regime, the on going daily sudden allergic reactions to nothing in particular, as well as the sudden decision by her consultant to transfer by her consultant to be transferred to Birmingham for more specific specialist treatment.  (Thankfully this decision has now been changed and for the time being we are staying put here at UHCW).

How long is this all going to go on for?  What is the end result?  waking up daily with the same question, is today the day it will all end?  It's extremely difficult being here day and night and not really seeing any significant change, especially a positive one.  Watching the pain and suffering, being helpless as a mum to do anything but say, 'it'll be ok, everything's going to be ok'.  Am I lying?  Should I actually say it'll be ok when honestly I don't know!

So what has happened this week, dilemmas, that's for sure!  Having to make the one difficult decision, to start a medication that can only be given through a jej that causes unbearable pain and twice a day, so how do you cope with the pain that this is going to cause, well in Chloe's case with her tolerance to pain it means high dose iv morphine and paracetamol together with high dose buscapan, buprenorphine, her butrans patches and a lot of will power deep breathing and a pillow tucked tightly around your middle!!

Mast cell (mastocytosis). Is this the cause of the sudden reactions?  Once again time and medication will tell.  The not so funny thing is, Chloe said about this weeks ago after endless research on the internet and talking with friends who suffer similar reactions that only now this is being questioned!
Today Chloe has had to endure another trip to theatre, a replacement central line, a seemingly straight forward procedure, well perhaps for others but when you have a tolerance to local anaesthetic extremely painful!

Living on the ward is exhausting, constantly putting up with inexcusable mistakes by staff, watching friends we have made on the ward also go through pain, misdiagnosis and continuous let downs, calling home trying to be positive, missing the normality of day to day life, but for now this is home, this is the battle, this is where I will stay, by Chloe's side praying for a positive outcome.  Thank you to those who daily message me with hope hugs and prayers, I am eternally grateful for your support.

4am thoughts

It’s 4am, I woke up to the usual beep, beep, beep. I do my best to roll over- a failed attempt but I know if get the air out my line I can go back to sleep. But then I see the screen “end of infusion”. It’s 4am in the morning and I am confused. Until I realise that my TPN wasn’t actually changed last night, after being hung there since 8pm the day before. Another mistake to add to the ever growing list. Why wasn’t it changed? Because my Mum and Jamie were so busy trying to comfort me through the pain I was in after having to attempt to flush my JEJ that Mum forgot to remind the nursing staff. They were too busy trying to get a doctor on the ward to get me more pain relief. To then discover I actually in fact had strong pain relief written on my drug card that I could have been given instantly. There goes another mistake.

It shouldn’t be our job to remind the nursing staff of every single thing they have to do, right down to which central line to hook my TPN up to. This is their job, the job they are paid to do. I am under their ‘care’. Well, if this is care I am very worried what a lack of care looks like.

I am reaching a point where this is not only affecting my health, but also the health of the loved ones surrounding me, because they are filled with dread at waking up each morning and hearing what mistake has been made next. This is hospital for crying out loud and a nurse couldn’t even reassure my poor Mum I was safe. When asked outright “is Chloe safe on this ward?” She simply replied “I’m sorry I can’t answer that question.” It fills you with hope and confidence I am receiving the proper care and attention I DESERVE doesn’t it?

So, as a family we have made a decision. We are going home. Forget diagnostics right now, forget curing the problem. Because honestly? This is so complex it might never be cured. For our own sanity and mental health, my family need me in a place they know I am safe from harm, medication errors, poor hygiene, lack of staff knowledge and total breakdown in communication. So that I can be in a place where I feel safe and my anxiety levels are significantly decreased. I place I feel able to be myself, and not be scared of who is going to do something detrimental to my health next. Because that is honestly the point we have reached. I do not feel safe under the care of this hospital, and my family do not feel that I am safe and well treated under the care of this hospital. Going home is not a straight forward procedure right now, but one that somehow we are going to make happen.

This admission not a single thing has been done to help my mobility, and when I think about the fact that I actually cannot walk at all, the sick feeling inside builds up. Whether that is grief for the movement I have lost, anger or sadness I do not quite know. What I do know is that I am in a hospital, and what I have found is that they find it incomprehensible how to treat more than one significant problem in one go. They seem to have no ability to get more than one team together and discuss how my body is working on a whole, instead they focus on one problem (usually nutrition because it is what keeps me alive) and the rest are left to deteriorate. My legs do not move at all anymore. I cannot even wiggle my toes. I try and send the signals but it gets me nowhere. Instead I am in constant agonising pain, especially in my legs but all over. This pain wears me down both physically and emotionally, to the point where I won’t even let my Mum hug me, because I am scared it will hurt too much. To the point where I have to have IV morphine just to move in bed. But the hospital cannot cover ‘rehabilitation physiotherapy’ as an inpatient. This is something that has to be done as an outpatient in the community, and therefore another reason why I need to get home, because the longer my legs are left- the worse they are going to get. The longer the nerves are left without signals and only feeling pain, the more they are going to forget the signals and all hope will be lost.

If I were at home, yes I would be bed bound most the time, but I would have my animals and my family surrounding me, I would have all my belongings and plenty to keep me occupied. My book writing is going incredibly well and I would love to work on that more. But this place drains me of life and energy. I stare at this little room day in and day out. On the rare occasion I am allowed to leave the ward, I dare not in fear that we will miss someone important or a decision being made. We have to be on the ball 24/7. That’s draining in itself.

We are all at a point of disbelief that 1) I am in this situation but 2) that you have to fight SO hard for care. I truly feel for those who don’t have a family to back them up, or the elderly who can’t voice their opinions and pick up on errors in the same way we do.

So, maybe home is the answer. It shouldn’t have to be, but we are human and we need a break.

Weekend are boring, but better than Mondays!

Well, Once again it is a Sunday and (touch wood) the ward has been quiet. I slept a lot of the morning, in fact it was one of those mornings I just couldn't keep myself awake.

I have so many ideas whizzing around my head right now about things I want to do. I am writing my book and finding it extremely therapeutic and beneficial whilst enjoyable too. I have an idea I can do from home and hospital to start earning some money, and also an organisation I would like to set up which I feel God is sending me a lot of direction to do.

All of this takes time (which I have plenty of!) but also energy, which admittedly I am lacking. I'm just really not the sort of person that can sit around doing nothing, perhaps something I need to get better at. It's a fact that rest heals.

I have a couple of interesting books I want to read, which will help me with my future plans and organisations. I also think it will add wisdom to my own book I am writing. I am taking things a day at a time, whilst still creating a future for myself. I refuse to let my illness beat me. In fact, my illness will NOT beat me!

I am going to prioritize the things I want to do and set aside a little time each day for the different projects. That way none of them will be forgotten and all will progress. I think this will really boost my self esteem and self worth.

I also need to work on my relationship with God, something that recently has been lacking. I guess sometimes it is really important to sit back and re-evaluate things. To see what things have been important in the past and should still be important now. I need to get back on track with daily study and prayer, I KNOW it brings blessings, so why am I stopping that for myself? I really have no excuse.

My education is something that will have to go on the back burner for a little while unfortunately, my concentration and ability to retain information just isn't up to standard right now and there is no point putting myself through the frustrating and upset intentionally. I have plenty of time to gain qualifications, and to be honest- I don't think you need qualifications to go far in life if you have strength, determination, wisdom and a drive to succeed.

Health wise I don't really know what to say. I am awaiting more surgery and we will take things from there. I am trying not to think about my health right now, and leaving that to others. It does get me down and right now I think it is important to stay upbeat and focused. Having a healthy mind is such a big part of having a healthy body. Obviously if something major happens with a breakthrough in treatment I will let you all know, but right now it is a matter of keeping me safe and stable.

I am spending time focusing on 'Chloe'. What 'Chloe' has as her needs a desires, regardless of how ill she may be. Because I AM still capable of reaching those desires.

I worry about Mondays, it brings doctors and ideas and stressful conversations. But I will deal with that when it happens.

Thanks Folks

Chloe xxx

The raw and honest truth.

This blog post is slightly different. Forget whats going on. Forget what treatment I am receiving. This is my blog and the one place I have the right to talk about me, because it seems like I cannot do that anywhere else anymore. 

I am very very hurt, fragile and afraid right now. I am scared of what the future holds. I am lonely. I feel lost and out of control. I have trust issues already, but they have been pushed to the max and now I feel like I can't trust anybody. It's always those that you hold close, that turn around and stab you in the back. Health professionals are people that should be trusted, but they have been crossed off the list too. 

I get A LOT of messages a day from strangers of all ages on different sites asking for my help and advice with mental health/physical illness. I have people pour their heart out to me and I always make time for those people, because that is the sort of person I am. Then there is people I love and cherish and have supported for a long time and will continue to do so. I don't mind the pressure, because whilst I am helping other people I don't have to think about myself. 

I am not a selfish person and I will say that about myself because I know it is true.

I make mistakes.

I am human.

I say things people don't agree with.

I am human.

I don't always do the right thing in other peoples eyes.

I am human.

Human beings are not and will not ever be perfect, it's fact. I am the sort of person that like facts, and consistency and right now I have none of that in my life. It has sent me into complete panic. A lot of people don't know that I do have to have routine and structure in my life in order to cope. I have done my whole life. In a hospital environment I have none of that and it puts me under a lot of stress mentally. Stress that others can process just fine, but for me is utterly horrendous. 

In hospital there is no routine, there is no consistency and there is no structure. My three main coping strategies. On top of that I have had to come of a lot of medication i have been on for many years, only heightening my anxiety. Right now my anxiety levels are through the roof. I feel like I am about to have a panic attack pretty much all day and all night. 

I am not sleeping because of the pain, but I am also not sleeping because my mind just wont stop with the 'if's, but's and maybe's'. My mind is on constant overdrive and it's emotionally exhausting. It does get me down.

Then there is people coming at me from all angles telling me I've done this wrong. I've said this wrong. I've said the wrong thing. I've spoken out of line. I speak about myself too much. I don't open up enough. I just can not win. 

I try my best but soon I think I am going to have to say enough is enough and take myself off the internet all together, which would be sad for me because it's the only connection I have with the 'real world'. It's the only outlet I have outside these four walls. It's the only way true family and friends do get in touch. It's the way I help others. But it is also the way people are draining the only ounces of energy and fight I have left and it's happening more and more. 

I refuse people to put me back in the position where I think I am a bad person. I was there for too long and I am not going there again. But what I do ask of people is to just cut me a bit of slack. I don't always let on how hard things are, but sometimes the emotions on the inside can't help squeezing themselves out. 

Being ill isn't all physical, it's emotional too and that's something I am really struggling with right now. Before you hit me with a message, maybe stop and think "is this really fair given all that is going on right now?" 

A well needed update- although one I didn't ever want to have to write.

Well, Since leaving Bristol my feeding hasn't been going great. With more and more nausea and vomiting we had to reduce and reduce my fluids so  I could at least tolerate my main feed (even this we now realise wasn't enough and my weight should have been monitored more closely.) I began passing urine less and less frequently to the point I was only going for a wee every two days. My bowel became unresponsive to my normal regime of picolax, lactulose and senna. I came to the realisation that maybe things weren't as 'stable' as we first thought.

Then I began not tolerating my feeds also which had to be reduced and THEN....Then came the pain. The uncontrollable excruciating agony when Mum tried to flush any medication down the tube. The vomiting got worse, everything got WORSE. This then progressed to pain when the feed went through and no matter how much the amount I was just in agony and vomiting strong acid for at least a few hours after the tube was used.

In the end I called my dietician over at Warwick (the only contact we have), who made the decision to turn  my feed off and send me to my doctors (who couldn't have been more useless!) So the following day we then made the decision to come back to A+E at UHCW. It was a good job we did. The triage nurse took my obs and rushed me straight through, got me on drips and told me never to listen to my doctor (who told me I would be fine until I stopped passing urine) and in the future go straight to A+E so my blood sugars don't drop so low.

Because I was unable to tolerate anything via the tube I missed my steroids- meaning my blood sugars could not regulate themselves and were dropping very low very quickly. The A+E doctors told me that the Gastro team wouldn't see me that night so to come back the next day to the acute medical clinic and they would arrange for someone from Gastro to be there. So we did. We waited ALL day. Did we see anyone from Gastro? No. So we came back the following day. Mum had to kick and scream which we hate doing, just to get me seen by a Gastro doctor- who admitted me.

But for a week I have received awful treatment, I have been left with low blood sugars because I have had no cannula or they have put me on the wrong bag of fluids. I have been left with no medication for 9 days with no sense of urgency. Mum had to ASK for me to be weighed. Just as she had to ASK for my blood sugars to be checked in acute medical clinic. It really does make me wonder who the doctors are sometimes.

I am now back under Dr. B's care. Who thought it would be a good idea to pass an NJ tube, incase it was nerve damage from my JEJ tube operation causing my pain. I wish that I could say it all worked fine and dandy with the NJ tube because it just hasn't. The NJ tube gives the EXACT same symptoms as the JEJ tube and it was completely intolerable.

Dr. B the consultant was away yesterday, and I was panicking I would be left with no plan for the whole of the weekend. BUT luckily my old Registrar, Dr. S was on the ward. He took one look at me and was in shock at how much weight I have lost just since discharge and says something needs to be done. Which is where the next plan comes into play.

TPN

Total Parenteral Nutrition 

TPN is an alternative to using the gut for feeding, It involves having a central line placed and being drip fed, a bit like an IV. This is hopefully going to give my gut a break so they can explore more what is going on and hopefully get my JEJ back in action. If this doesn't happen I will stay on TPN.

TPN has it's risks. Infection is a big one so the line must be kept very clean and sterile techniques must be used. It obviously isn't natural for the body, but it is a much better option that starving, which is what is currently happening to me right now. I should be getting my line placed in theatre on Sunday ready to be used Sunday/Monday. I have already started vitamin infusions to stop re-feeding syndrome and make sure the feed isn't too much of a shock to my system. 

I am scared, but I know as with everything else I have been through- I can do this. I have been scared with a lot of things but I have also achieved them! I think once I start having proper medication again I will feel a whole load better, and of course nutrition will make a huge difference too. 

I just can't thank the people that have stuck by me enough. So many people have left me on this journey and I am forever grateful to those who haven't. 

Just a little note to say...

This is my mummy, Suze Meredith.

This is my appreciation post to her, because she deserves it more than anyone else in the world. 

My Mummy is my rock during hard times, my comforter and my guidance. She teaches me to be the best person I can be, just by following her example. She is there to dry my tears on hard days, share my giggles on good days, have serious chats when I need them and light hearted ones when I could do with some distraction. 

She is by my side whenever I need her and looks after me pretty much single handedky most of the time even though she is not well herself and it absolutely exhausts her. She is there to fight my corner when no one listens, and stops me blaming myself for the wrong doings of others. 

My mummy's never gives up on getting the things I need, whether it takes her hours to sort- or weeks. She is so supportive she has slept on the floor of my hospital room just so I am not alone. Mums personality is selfless. She constantly puts other before herself, whether that be a friend or a stranger in need she will try her hardest to make things right. 

I have never met such a determined lady that constantly puts others before herself and I am so proud to call her my mummy. I love her more than anything in the world. Thank you for never giving up on my no matter how many times I have tried to push you away, there will never be anyone as great at you, Mum. 

Love your number one girl, Chloe Alice xxxx

NHS, I have no faith in you anymore.

Things aren't good right now, my body isn't comprehending and all I ask is a doctor treats me with the care and respect I deserve. I've had no feed for five day and no medication either. I didn't see a doctor until four I clock yesterday  even though I was admitted the day before, no bloods have been taken and no drip. I am so upset that all I need is support whilst being so unwell and it's just not happening 😥 I can't tolerate anything through the jej anymore, not even 5mls. There has been talks of TPN which petrifies me, and my picc line is most likely being put back in as finding access is getting far too traumatic for me and time consuming for doctors, especially as it needs an ultra sound machine. I just feel completely deflated, I thought thighs were getting better but they are Infact what seems to be getting worse.  

If nothing happens today we will take this into our own hands, I will leave this hospital and be seen elsewhere by healthcare professionals that actually want to support their patients. Mum and I describe this admission as "going back to a boyfriend you've been with before" it's never the same and there just isn't the same support and bond. It may sound silly but I am not in a good place. Right now my blood sugars are less than 3.2. What have they done about it? Nothing. I think it's completely outrageous and I'm getting to the point where I am angry because I am so scared no one seems to be doing anything. I am itchy from head to toe. I'm in agony.  I have a headache from dehydration and they just. do. not.care. 😥 

So, as I said I need to see a consultant today or I am not staying here, it's of no benefit at all lying in a hospital bed  when I could be a lot more comfortable at home.  Of they were doing something fair enough. 

NHS you are failing me and so many others, this just isn't good enough. 

Sleep Deprived! (Written at 4.25am)

Why can't I sleep? Because I have no pain medication and I literally can't get comfortable without them. My whole body from head to toe is in agony. There is no point waking Mum up to turn me because I know I wont get comfortable.

We are struggling right now, yesterday I had to go back to UHCW, I ended up being rushed through and put on a glucose drip. They wanted to keep me in, but I compromised saying I would go back today. I can't cope with being admitted again! I'm not tolerating my feed. Eve 5mls is leaving me in agony and making me nauseas then vomit. It scares me if I am honest, my body NEEDS to tolerate feed or i'm in big trouble.

I have lost even more weight since leaving hospital. I'm not officially underweight (BMI wise), so we really have no time to mess around. I am hoping gastro have some answers today. Otherwise we have a back up plan. I am going to see Pros Aziz in London on Tuesday 23rd of this month. He is the top guy, I hope and pray he has some answers. I need to get this sorted - I don't want to starve :( It makes me feel so ill when I have had no feed for so long. Luckily the IV fluids picked me up a bit.

Come on body- you can do this!!!

Love to all xxxx

I am so blessed to have wonderful people in my life!

Yesterday I collected my new wheelchair from leicester and it is one step forward to making my life easier. But not only that, it has boosted my confidence so so much! I can push it so much more easily, it supports my body in the way I needed it to, meaning I am able to sit out in it a bit longer. It is also easier for Mum and family to lift in and out of the car, and ban be made much more compact. It gives me a glimpse into the independence I so desperately need and shows me that the right equipment DOES make a difference. I am still a nineteen year old girl and hate being totally reliant on others.

I haven't been feeling brilliant recently and will welcome today as a day to rest. I know sometimes I push myself too far and to do too much, but I find it so difficult to sit down and do nothing, it sends me crazy! It's something I need to get better at and will work on, because sometimes my body HAS to stop and catch- It's all going to take time to adjust.

Last night I pushed myself to go out and I am so happy I did. I have the most WONDERFUL church family that I am eternally grateful for. Thank you to those that have stuck by me, I love you all.

Chloe xx

Recap of last week!

In pictures :) 

Monday was the BINTON social club fundraiser, reaching an amazing total of £300! Miles and Bobby did a great job singing and I had a wonderful time! 

I even managed a game of pool! 

Tuesday I did absultely nothing- I was exhausted from Monday! And the pain was pretty horrendous. 

Wednesday and Thursday were exhausting too! But I spent plenty of time with my animals... 

Thursday night landed me with an ambulance trip to hospital... :( 

Friday I came out of hospital and the rest of the day just didn't happen! 

Poorly Chloe. 

Saturday wasn't much better (gosh, recapping makes me feel like I did nothing!) 

But Summer and Delilah kept me company :) 

But Sunday...THE DUCK RACE!  

Which landed me here: 

Atleast my boys looked after me :) 

Here's to the start of a new week, new perspectives and lots going on! 

Will be back with you soon :) 

Chloe xx

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