Welcome to Be Dazzled Parcels

Wow! Here we go! I have dreamed of doing this for so long and I am beyond thrilled that I can finally do it! Please be under no illusion though, I absolutely could not be doing this without the amazing generosity of our contributors. 

I promise this blog is going to be full of all the wonderful things related to this project but I thought in the first two posts I would introduce myself, my journey and what inspires me to do this then do the nuts and bolts and write in detail about the way this project will run. If I was a television presenter I would be telling you the terms and conditions are available online 😉😆

So, who am I? 

Well, my name is Chloe, I live by the sea with my wonderful daughter and husband and before I got sick was a working singer songwriter. I was also studying for a degree with Open University in "Childhood and youth studies" with the intention of becoming a child protection officer in a school and a higher level teaching assistant (which would have required further study but means you can teach) because before I had my daughter I worked with special needs children as a teaching assistant during the week and then in clubs at the weekend hosted by social services for children with special needs to provide their families with a few hours respite once or twice a month. 

 Since I became too unwell to be able to commit to gigs I have concentrated on poetry instead and love writing. In 2019 I completed my first poetry book which I really look forward to launching in 2020. I had to walk away from my degree in the final year when I had one paper and one exam left because I'd started having seizures and just could not retain information.

 I think words are the most powerful tools we have in helping people understand what living with disability and chronic disease is like which is why I've carried on with my poetry. I'm aware there can be a lot of hurt in the chronic disease community that people in the well community don't understand us or even try to understand us and the challenges we face in an effort to live our best lives and I believe the way we can begin to change the tide of understanding is by being honest in the way we tell the accounts of our diseases. I really appreciate how terrifying this is though and trust me there is a knot in my stomach every time I make myself vulnerable and post online! 

In 2008 I married the man I love and who is as some might say ''the great love of my life'' and shortly after (ok 2 months later!) in 2009 I gave birth to our beautiful daughter. For three years I was a babywearing, vegetable growing, happy active mother and wife, as I said before I was studying for a degree with the Open University, working on my first album with an incredibly talented musician called Steve Jones who was also a wonderful friend and I felt like our family had our best years ahead of us. Nothing could have prepared me for what was to come. 

Walking our daughter to preschool one day I started to feel a deep burning in my hip, all my life I had felt as if my hips would pop in and out but this was different! My hip didn't feel 'out' and nothing I did helped the pain. After a few days I booked an appointment with my GP and was told I had a hip infection in my hip joint, given a pair of crutches and told not to weight bear . I didn't know then I would never get off those crutches!

My hip didn't get any better, in fact the pain got worse. I was referred to my local hospital where doctors booked me a dye contrast MRI and it was found I had significant labral tears. I was sent to a hospital a few hours away from home for surgery to repair the tears where they also found a lump of bone which they ground away. After the surgery I went from having what I now know to be semi dislocations a few times a year to full blown dislocations daily. 

I was referred to London for major surgery on my pelvis, my mind spinning. I met with the consultant expecting to hear about a huge operation but one I could recover from, even if it was going to be a tough recovery. After a thorough exam the consultant apologised to me and told me he couldn't do the surgery. It was more complicated then that. I had Ehlers Danlos Syndrome type 3. 

I went home and threw myself into research, what was this connective tissue disease I'd never heard of and what was it going to mean for my life? 

I didn't know much in those early days but one thing I did know was I didn't want anyone to feel as alone and overwhelmed as I did. My parents raised me with a heart for helping others and once the shock of my diagnosis had settled I made the resolution that I wanted to do something so I set up a YouTube channel and started writing a blog. You can find my YouTube channel by logging onto YouTube and searching Unexpectedsongbird.

At first I was able to continue preforming, continue walking on crutches getting around on a mobility scooter and living an active life. It wasn't long before I needed more surgery on my hip and other joints started dislocating. I had to put so much weight through my arms walking so I didn't put pressure through my hips that my shoulders started popping out and my hands were so painful. I'd fought it for a long time but it was time to start using a wheelchair. On reflection I wish I had done it sooner, it would have saved myself a lot of pain and suffering!

Over the next 7 years my EDS would start effecting my organs too, I needed an ileostomy stoma, followed by a total colectomy, I started having seizures and great difficulty swallowing being sick after every meal, I suffered a severe intestinal twist which meant my intestines had to be sewn to my stomach causing painful nerve damage and worsening my gastroenterological issues and eventually I was fitted with a peg feeding tube. I had serious double pneumonia twice and was in widespread pain all the time. My poor family were told multiple times to prepare for the worse. If I included all the illnesses and injuries we would be here for a week! 

Every illness and injury though made me even more passionate about supporting others living with this disease and raising awareness. Determined to make it different for the next generation. 

2019 was by far the hardest year we ever faced though, I could keep barely any of my feeds down (already only a 500ml 1000 calorie bag a day otherwise I bring up the whole lot) and the weight fell off me, weight that I didn't have to lose. My chronic fatigue was indescribable. I was so malnourished my teeth were falling out when I was brushing them, my seizures increased ten fold, I couldn't hold on to information and all I wanted to do was sleep but I couldn't because the pain was so horrific. 

I can't write about my medical care leading up to my admission now but I was being seen regularly by a gastroenterologist and dietcian. By the time was I was finally admitted to hospital I was 7 1/2 stone and so weak I couldn't sit up unaided or even roll from my back to my side.

On the 2nd November 2019 I was admitted to hospital with malnutrition and dehydration and put on PN (parenteral nutrition) a line was placed into my arm which went through my vein into my heart and I started being fed directly into my heart. 

When I was first admitted we were told I may have as little as 3 months left to live if I didn't respond to the TPN and by having to go on the PN my EDS would be classed as life limiting and I will have a 50% chance of surviving the next 5 years. 

I had to hear those figures and believe that I am going to be the person who smashes them and I won't accept them, it has however made me more determined then ever to leave behind me a truly positive legacy and relief the suffering of as many people as possible if only for a few hours. 

I spent 3 and a half months in hospital and during that time launched Be Dazzled Parcels. I've been sending parcels to my friends living with EDS for years but back in the autumn I sent a parcel to a woman who comes to the local support group I set up in my hometown  (people from all over the county travel to it) who was having a really tough time and her Dad (who also attends the group) was so touched when he found out I hadn't just sent his daughter a parcel but it was something I tried to do regularly with people living with EDS he said he would like to make a financial contribution to the parcels.  

This gave me the kick up the backside I needed and the ideas started twirling in my mind. At the time I wasn't well enough to act but once I had started the TPN that was it! I was up and away! I asked in my hometown's Facebook group if anyone making homemade crafts would be willing to donate items they'd made and created a list of ideas of items people could buy to go in the parcels. I also wrote to local independent businesses asking if they would be willing to donate and put out a call on my personal Facebook page and in a support group I am an admin in. 

The response was amazing! I was blown away and absolutely thrilled!! 

I can't do anything to physically take away people's suffering but if sending someone a parcel of goodies may brighten their day then all the asking, stock taking, advertising, buying and wrapping is completely worth it! 

Anyone living with EDS, their partners/carers or children can be nominated for a parcel and each month I will put everyone's name into a hat who has been nominated and draw a name during a Facebook live.  

To get involved you may join the Facebook group 'Be Dazzled' or if you would prefer bedazzledparcels@yahoo.com

A child living with EDS themselves can also be nominated and it is my hope that any child living with the disease who is nominated will automatically receive a parcel and not have to be put into the mix with everyone else. 

I hope this project can have a really positive impact in the community of those living with EDS and as I said above brighten someone's day and alleviate some of the emotional and mental suffering that can come along with being chronically unwell and in chronic pain.  

Please check the blog regularly for updates on how the project is going! The next post will be the rules around the project followed by the list I email to people who get in touch asking for ideas of things to donate. 

I pray you are blessed today. 

Chloe