Huffington Post: Chronic illness and Christmas

Hi all!

wanted to bring to your attention a post I wrote for the Huffington Post in regards to living with Chronic illness through the Christmas period. Christmas can be difficult but with the right support and understanding still so enjoyable! I hope this article helps bring an understanding for many people living with complex health needs over the festive period.

You can read the article by clicking here or following the link below!
ttp://www.huffingtonpost.co.uk/chloe-printlambert/chronic-illness-at-christmas_b_13577828.html

ishing you all a wonderful Christmas and New year!

Chloe x x

I'm back!

Hi all! 

Well, although I have kept my Facebook page pretty active, I know the same cannot be said for this website. Over recent weeks I have decided that is going to change! My focus is now going to be back on making this website something special and I look forward to sharing that with you over coming weeks. 

As you know I have had many life changes in the last year and as a result I have also gained a fountain of knowledge to share. I am happily working towards expanding the group for young people I created (almost 500 strong via facebook!) to its well deserved non-profit status. I am working on projects for numerous projects using things I am passionate about - creativity and equality. 

This website will therefore be a working project for a little while, and through that process I will be adding downloads, tips and tricks, links and more. I will leave it there, surprises are fun! 

Thank you to those that have been on this journey with me for so long and continue to support me each and every day. I appreciate the love and adoration I get through letters, emails and calls. I value the praise I receive and although I don't see myself as an inspiration, it makes me happy that people appreciate the work I do! 

With love and well wishes always! 
Chloe

NEWS: THE BUILD IS HAPPENING!

Thank you DIY SOS, for creating bringing life back to a family that didn't have the space to function. A huge thank you to all the constructors that are helping the SOS team, to those that wrote in to them explaining the situation and the needs that were not even close to being met. 

 

Chloe is very unwell, she is being well looked after at Redditch hospital and Fighting hard, she is so so overwhelming that in eight days time the family will have the most incredible new space and that the limitations she has faced will be lifted hugely!

Without the support Chloe and her family have received, this wouldn't have happened. Thank you isn't enough to describe how grateful Phil, Suze, Chloe and Joshua all are and will forever remember the people that have helped restore unity for a family that were desperate so have space to be together. For Chloe to have safe living space that aids independence, it's indescribable because it's just going to be so amazing to increase Chloe's quality of life. 

We are going into a new chapter- and have a huge army of support with us, thank you- again! 

Love and blessings, thank you for the best Christmas present EVER. 

 

Chloe and the gang!  

Chloe and the gang!  

Nick and Jules have been to visit Chloe, which she was hugely grateful of. 

Nick and Jules have been to visit Chloe, which she was hugely grateful of. 

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October Thank you's!

Hello all,  

 

As October draws to an end I wanted to take the time to share thanks for multiple individuals, groups, companies etc that have been fundraising for me recently! there is a few events upcoming soon and other that have recently passed, all I am hugely grateful for! 

my first huge thank you is for Lizzi Floyd  at the beginning of October Lizzi did something so amazing to raise money for the dream fund. Lizzi has chronic illness herself and can relate to the constant battle health implications can cause. To help myself and my family she cut her super long hair off and all the sponsor money was donated to the fund as well as her hair being donated to a separate charity also! I am so so grateful that anyone would do something so brave for me- Lizzi you are a star, and such an incredible friend- thank you from the bottom of my heart, I'm eternally grateful! Here is the before and after pictures of Lizzi's brave hair cut- doesn't she look amazing! 

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Before and After- Lizzi's first hair cut by a hairdresser in six years! 

Before and After- Lizzi's first hair cut by a hairdresser in six years! 

Another huge thank you is for Concensus Opera for their performance of Oscar Wilde's 'The Importance of Being Ernest' held at the town hall yesterday evening and again tonight! The production has kindly been in aid of Chloe dream and I have heard wonderful things about the performance already! A big thank you to Tim and Claire Johnson as well as all the cast members and all involved in ensuring the production is a huge success and I am told it has been many times in the past! My sincere apologies for being unable to attend myself, but I do look forward to meeting you all in the near future to share my thanks in person! 

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The next event is going to be a fantastic evening and for the car enthusiasts you won't want to miss out.....

This Sunday from 7.30pm onwards!

This Sunday from 7.30pm onwards!

A huge thanks to Jessica  + George Morris and Luke Sumners for putting so much hard work into this event- you have been so kind and I appreciate all the organisation you have done to make the evening awesome! I'm well aware that many others have put a lot of time and effort into the event and I can't wait to meet you all and thank you in person!   

A huge thanks to all the support I have been shown on the event Facebook page also, it's so amazing to know I have the support of so many people! 

 

I promise to continue my thank you list very soon! There is so many people that deserve more than words as recognition for all the effort put into helping me and when the adaptions are done I really do hope I can advocate for others from what I have learnt throughout the process and give back in the way people have so kindly given to me! 

 

Take care, with loads of love!  

 

Chloe xx  

A much overdue update!

Hi all!

I can't believe how quickly this year seems to be passing by. Although I find the days can drag at times, the months have certainly flown by and I cannot believe we are already coming up to September. 

Over the last few months there has been lots of amazing support locally for myself and my family and we send a huge thank you to everyone that has been involved in fundraising and donations. I am going to do a separate update on the housing adaptations and what stage that is at, as I have lots to share in this post already and you may get a little bored of reading all my ramblings in one go! 

I am eternally grateful for every single donation I receive towards 'Chloe's Dream'. The time people also invest into helping us is equally appreciated. I often receive messages from people saying things along the lines of "I am sorry it isn't much" or "I am sorry I cannot give more" and I just wanted to say, no matter how big or small a donation is, I am so thankful. I completely understand that money does not grow on trees (wouldn't that be amazing!) and that life is expensive. Just the fact alone that someone makes the choice to help us is incredibly humbling and makes me extremely thankful. The saying "Look after the pennies and the pounds will look after themselves" springs to mind and I have seen first hand how small donations all add up into something amazing. 

A few special 'Thank you's!' are as follows: 

A big thank you to Kerry Brown for organising the women's afternoon at Wickhamford Sports Club. Thank you to everyone that came and showed support for St Richards Hospice and myself as well as those that organised stalls at the event. This event was made even more special with the surprise visit from my best friend Rachel who travelled up to the event to support us!

Another huge thanks goes to Lorraine Mansfield and family for the generous donations and support from Sarah's Well. We are so grateful for the kindness you have shown from your family to ours and I hope that I can continue doing work in the community with Disability and Complex Chronic illness awareness that would have made Sarah proud. 

Bidford Area Community Choir, the incredible concert you held to raise money for us showed me what a lovely community we are a part of. The concert was fantastic and the amount of people that came made me realise that we are part of such a great village community that supports local individuals in times of need. Thank you! 

Recordings from the Bidford on Avon Area community choir concert in aid of 'Chloe's Dream'

A great big thank you goes to Pauline Roberts and the Newbold Scouts 5th Rugby for their kind donations to our project. I am really impressed by you all for showing such kindness and empathy with your donations and look forward to coming to meet you all when I am well enough!

Last but by no means least, Thank you to Sarah Grubb for kindly nominating us to be part of the Warner's Budgens Community Savings Scheme. Until 31st January 2016 one of the large donation boxes within the Budgens store is allocated to 'Chloe's Dream' and any donations made during this time will be presented to us as a family. 

Tokens at Warner's Budgens for 'Chloe's Dream' fund.

I would also like to share thanks with: Merryn and Clare Crofts, Miranda Williams and family, Wayne Weatherhead (on behalf of late Charlotte Weatherhead), Mike and Val Prickett, Staff at NFU mutual Woodland IT department, Shelley Robinson and everyone else who has fund raised for us within work, groups, churches and more to raise these vital funds over the last year. I am aware there is many other people that have helped us to raise funds, and everyone is equally appreciated! 

Over the last few months I have also had some great chances to raise awareness for the complex health conditions I have both online and in newspapers. 

I would like to say a big thank you to Laura Kearns for her dedication to ensuring 'Chloe's Dream' was publicised locally and keeping up with local events in the Stratford observer. 

Those articles can be found here and here.

A big thank you to Caters news agency for their time and dedication to ensuring my story was accurately publicised nationally. Speacial thanks to Laura Hartley for embarking on the challenge of understanding my medical condition and writing about it so clearly. Thanks to Mike also for having such patience when taking photographs for the article and making me feel at ease, as well as driving over to our home from Birmingham to do the photo shoot! Links to the articles can be found by clicking the images below.

As well as Newspaper articles I was also privileged with the opportunity to write an article for 'The Mighty', a fantastic media company for articles written on topics involved with Disability, Chronic physical illness and Mental illness.  I look forward to writing another article very soon, once my mind allows me to focus! To read my article please follow the link below. 

'Why I am Thankful For This Cashier's Ignorance About My Chronic Illness'

The final project I completed recently was for HANs Awareness week 2015, A week dedicated to raising awareness of home artificial nutrition. The week ran from 10th-16th August and during this time I created and published a video on social media to highlight Home Parenteral Nutrition, a form of artificial nutrition that totally bypasses the digestive system for people with severe digestive tract conditions such as Intestinal Pseudo obstructions, Crohns Disease, Gastroparesis, Mast Cell Activation Disorders/Mastocytosis, Short bowel syndrome and Intestinal failure to name just a few. 

I was also involved in a fantastic awareness video created by PINNT, a fantastic charity that supports people receiving artificial nutrition. Click here to view the video! 

Whilst I would love to share with you all a few other projects I am working on currently, I must keep these under wraps a little longer to ensure everything runs smoothly! Although my energy levels are very limited, the energy I do have I try to use constructively to create positive change for those with similar situations to my own and reach out to vulnerable young people using my own experiences to make a difference.  It makes getting up and fighting each day so worth the battle and the thanks I receive from people both locally and further afield makes every moment of blood, sweat and tears (literally on many occasions!) totally worthwhile. 

During the next week I will do my best to update in more detail on my how my health is currently and will also explain the point we have reached in regards to the housing adaptations that are so desperately needed.

Sending love and warm wishes to all, 

Chloe xx 

A message from the heart.

It has taken me a lot to lie here tonight and decide to reach out in this way. Social media is a huge network of support for me and I am truly grateful how every single person I have come into contact with via this means has impacted my life. Sometimes it is through the kindness of others that it builds up a level of internal reassurance to help us realise that there is genuinely kind people in this world that go out of there way to do kind things for others.

Although I share my story openly with on social media each and every day, what I am sharing tonight feels much more personal, and almost that I am being left vulnerable. It is due to how much I am determined to rectify this situation my family and I face, that I am choosing to stand up and look beyond that fear and back to the reassurance that I have received such wonderful kindness in the past.

 

As many of you know already, as a family we have needed our house adapting for over a year,  as the current circumstances are not safe let alone suitable for my needs. We have spent 8 months fighting for a disability facilities grant only to be met by constantly brick walls created on every path we turn. It is becoming more and more apparent as time progresses that the council feel that because my needs are so complex and the requirements that have been listed are not simple, that no matter what happens: a 30,000 pound maximum of a disabled facilities grant is simply not going to be enough to adapt our home. It has been agreed by everyone involved that I need a purpose built bedroom, wet room and medical storage room in order to live safely here, where I feel I belong. I currently do not have access to a toilet or shower. I rely on my Mum to empty a commode pan for me upstairs so that I have somewhere to go to the toilet. I rely on having a wash down with a bowel of hot water, as I have no way of accessing running water in my home. In this house I can access one room. This room was the family room, it was gone to our dining table, sofas and TV. We spent all our time as a family in here whether that be sitting round the table eating Sunday lunch or playing the most entertaining sessions of 'the game of life', watching the television at various point of the year, flipping pancakes, hanging up the Christmas decorations or making a giant paper mâché elephant- it's all happened in here and it has all happened betwee four members of a family that love each other dearly. 

 

When my health took a drastic decline back in April 2014, there were still moments out of naivety that we thought there was going to be a solution, a fix. That it was all temporary and that soon I would be back in my room planning my next adventure. Unfortunately it hasn't turned out that way and it's important that as a family we are able to face the idea that I am going to have these health difficulties for the foreseeable future and be realistic in seeing that unfortunately things are declining still in different areas of my health. 

 

Short term the the family room became my bedroom, we made the decision that it was so important for me to be home after so long in hospital that we could deal with things like a commode and bowels of water because it meant we could once again become a family. After seven months of me being in hospital and Mum staying by my side to support me day and night, the emotional aspect of our family being torn in two was taking its toll.

To this day I am so incredibly grateful how my Step Dad, Phil single handedly ran the family business, working endless hours to support us as our only means of income as a family whilst looking after my 11 year old brother at home and supporting him through the transition to secondary school. To then go to bed alone, when he had a beautiful wife (and me!) that he dearly missed. They say men can't multitask but Phil did and to this day does an incredible job.

Joshua, who is now twelve had to deal with the confusion of not only me being in hospital and over a short period time having to come to grips with having a very unwell sister, but also the transition to secondary school where he was in a new environment, with a new routine and having to grow and mature to do things like catch the bus alone and navigate himself around a new school much much larger than what he knew and not knowing any of his peers. He was having to get to grips with having a much heavier homework load, something that Mum had always supported Joshua to manage, and ensured that his routine was effective so he could have as much 'down time' as possible and enjoy being a child. 

Last but most certainly never ever least is my Mum. This lady went above and beyond to make sure that all of us were holding on tight and dealing with the situation the best we could. Mum made the 80 mile round journey home sometimes even just for a couple of hours to spend time with her Husband and Step Son also, to cook a quick meal and check the washing was in hand. To do all the bits we take for granted because when mum is around they are all so seaminglessly completed. I witnessed first hand the extent of Mums exhaustion, and is it really surprising when the only rest you have had for months on end is from a sponge mattress on the floor of my hospital room?  Many nights Mum would sit by my bed to make sure my machine alarming didn't disturb my sleep. So that sleep could give me some time free of the pain I was suffering. Even in this situation Mum continued to help any one that needed her support.

But of course this whole whirlwind of stress and heartache, uncertainty and longing to be a family once again totally aided us in reaching the decision that once I was medically well enough, I needed to be at home. So that we could be our four again. 

One of the stress factors I listed was uncertainty. Although my health still holds a lot of uncertainty in the way it could deteriorate in the future, we are unfortunately certain on one thing and that is that through having the knowledge of multiple diagnoses' and specialist medical professions we know that this isn't going to go away as much as we long for it to be a horrible, horrible dream. 

What I feel is really important, is to explain how imperative having a suitable place for me will not just change my life, but how it will positively change the lives of three of the most important people I have. We all have those we love wholeheartedly and to think that through my illness they are suffering? It really, really does hurt to a point where I feel tears start to well up in my eyes almost instantly. The saying goes; "money can't buy happiness", but for us currently money is what we need to make the house a place that I can be safe, gain more independence back and so that we can have our family space back. 

 

Our family room no longer holds happy memories like it once did for me. Those memories have been overshadowed by the frustration of feeling trapped writhing these four walls and of all the pain and suffering I have felt whilst trapped here. It hurts deep inside to hear my family spending time together in a small separate room we have, that is inaccessible to me and therefore stopping me from being able to join them and share those precious moments. It hurts to know that my illness is not only affecting the way I eat, but the way they eat also as they no longer have a dining room table to sit round and enjoy the social aspect that comes with any meal. Along with a space to enjoy social eating, my brother now no longer has a table to do his homework out and rely's on a small put me up table that is kept underneath the settee.  Although these things may seem small and trivial in the grande scheme of the situation, they are the day to day reminders of how our lives have been turned upside down in the past year and how our personal healing and coming to terms with how we will face things in the long term is being directly affected by the layout of the bricks and mortar we live in. 

 

The disability facilities grant can only cover an adjoining extension. Which poses difficulty for us as this would make my only access to the family home via the kitchen. Something that has been refused from a health and safety prospect as my oxygen cannot be taken through the kitchen as there is too much risk involved with the gas and I particular the naked flames. The DFG would only be enough money to hopefully cover my extension, meaning that no adaptations would be able to take place on the current house hold. 

Phil does a faultless job providing for our family. He works harder than most men I have come across and will go out of his way to make sure we all are comfortable and have the things we both need and would like. Joshua and I are not spoiled, and we know that me being in hospital especially, put a massive drain on the funds we have, spending 1700 pounds on parking alone without considering petrol costs, Mum being able to eat, all the equipment I needed, costing thousands of pounds, basic changed to the house to make sure I had new flooring etc when coming home on parenteral nutrition. Phil is one man and not a miracle worker (although that would be great we love him the way he is!) and the reality is we simply cannot afford what we need to change our families lives in such a huge way. 

There is only so long my Mum can be lifting me, without causing herself an injury that will land us all very stuck, as Mum cares for me throughout the day and night and I rely on her for almost everything. If I could be hoisted this issue would be rectified but 1) we simply do not have the space 2) when there is only 2 person hoists available and Mum cares for me single handedly 90% of the time- this just isn't safe for either of us. 

I've never had such simple wishes in life, but being unwell really has made me realist what we take for granted. To have a flushing toilet and running water I feel like my life would already be so much different.  

This is something that means so much to me that I could talk about it forever, but I am going to stop talking about me, and ask to talk about you.  

 

Im writing this because I desperately need your help. I totally understand that many people I know are not in a position to support us financially, and please do not think that I hold that against anyone. What I would like to ask is that if any one feels they can do anything from fundraising to spreading the word to sending us positive wishes and prayers or anything at all that could help us achieve our dream that means so much. I am so so grateful for any level of support towards us and effort put in to take the steps to do so. 

For or those that feel in a position to support us financially, I am so so grateful to you also. There is a go fund me account dedicated to raising funds for the build and it can be found at: www.gofundme.com/fundingchloe

 

equally if you would like to find out more, you can do that at: www.chloesdream.co.uk  

or updates on how things are going for me and regarding the build on Facebook at: Building a Dream- Chloe's way Forward.  

 

If you have read to the end of this, thank you. Thank you for taking time out of your life to read about ours. I appreciate it more than I can put into words, but I truly hope that I have explained things in a way that show how real this situation is for all of us and how much it could changes.  

 

Take care,  

 

Chloe x  

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