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