The Spoonie Community


Hello there everyone,

I hope you're well and I am ever so sorry once again that it has been such a while since I previously posted on my blog. You're probably used to the pattern now anyway, it's well known that my posts are few and far between, but that doesn't matter because when I do write I thoroughly enjoy it, making me very happy indeed!

As many of you know I am a 'spoonie' or in other words, somebody with a long standing chronic illness. I have a variety of digestive illnesses with a very long list of horrible symptoms which are very hard to treat or are incurable and they make me very poorly. I can not eat solid food, if I do it will only be a forkful because if it's any more than this, I will be paying for it for the next half a day or so. I am very underweight because I have lost a lot of weight due to my digestive problems. I live on a liquid diet of nutritional supplement drinks prescribed by my consultant and take a great deal of medication daily. I previously had a nasogastric feeding tube and may have to have one again if the new medication my consultant is trying me on, fails.

So, it must seem all doom and gloom to all of you healthy people right? You're wrong, because there is a very big and beautiful part of having a chronic illness, and that is the spoonie community which is predominantly online within social media groups on Facebook or on the social networking site Instagram under hashtags such as #spoonie #spoonielife #chronicallyill #chronicallyfabulous and so on. I have met some absolutely wonderful, caring and understanding people in the spoonie community and I couldn't be more grateful. It's comforting to be able to talk to and make life long friends in other people who are going through the same or similar things as you are, dealing and living with a variety of chronic illnesses.

I of course, am very grateful to my healthy best friends, friends and family who are supportive of me and do all in their abilities to help me and make me feel cared for and loved but nothing can compare to the deep understanding and ability to be emphatic towards each other as spoonies do. They don't care if all you manage to do is make it out of bed and onto the sofa and spend all day there under a blanket, in your dressing gown with a hot water bottle. There are no questions asked if you roll up in your sweatpants and hair tied up messily and you always know a fellow spoonie will be awake at 2 in the morning ready to chat to you through all your pain and symptoms because they're in exactly the same boat. We all stick together, take it day by day and hold each other's hands through the dark times. I do not know what I would do without my spoonie family and I am getting quite emotional writing this because you all mean the world to me! You are all stars!

As I said, it is mostly predominantly online but I have been one of the lucky ones who have fellow spoonies living close by who I have been able to meet in person and these girls are super duper lovely! We can all have a good time together on little outings when we feel well enough and not judge one another when one bails at the last minute because we've all been there, we know what it's like when even getting ready to go out can use up all of your energy so you're unable to actually make it to where you was planning on going. They know what it's like to live with debilitating symptoms day in and day out but we try not let that stop us living life to the full or having fun, all together as one cute spoonie family. I class them as sisters (spoonie sisters) and I love them with all of my heart. Even the spoonies I haven't met, you all have a place in my heart and I would one day like to be able to meet you in person!

So that goes to show that every cloud has its silver lining.

If you are a spoonie and would like me to add you to some of the social media groups where I met most of my spoonie family then do let me know!

Thank you for reading, lots of love, Koren xo

Few And Far Between


Hello there everyone,

As the title says and of course as you all know my posts to this blog are few and far between. That is, because of lack of energy to be able to write. I do apologise for this my lovely readers and as always I hope you're well and your new year of 2016 is going just swimmingly.

I hope you all had a wonderful Christmas.. In my last post I said how excited I was that it was coming up and YES I did manage to enjoy myself with my family and even have a little bit of chocolate! On Christmas Day itself temptation was at its strongest and I had my first Ferrero Rocher chocolate that I had eaten in years. In fact it was the first piece of chocolate to pass my lips in months and it was absolutely beautiful I must say! My friends know me as the super duper chocoholic with her own special secret chocolate collection stashed away in her pink tin ready to dive into whenever she pleases (of course I share with my friends). Unfortunately though because of my digestive illnesses this super duper chocoholic girl faded.. but she's slowly coming back!

Just before Christmas I stayed in hospital and trialled having an NG (Nasogastric) tube - the plan was to be fed overnight through the feeding tube and then work on building up my food portions in the day. Unfortunately the NG tube was causing me a lot of pain and discomfort in my throat and I couldn't swallow very easily with it in - I had it removed and a new one put it to no avail. After 8 days of staying in the hospital I was discharged home on Christmas Eve (I was so happy about this) and was prescribed new nutritional drinks and medication. I've been managing 3-4 of the nutritional drinks a day (900kcal-1200kcal) with tiny portions of food and have managed to put 2-3 pounds on within around 6 weeks. Although not enough as I am still dangerously underweight - it's something!

Next week I have a hospital appointment with my doctor and dietician to discuss a long term dietetic care plan with me which may involve me having to have a long term NG tube. I will soon find out anyway and make sure to keep you updated as to where we are going now! If I do have to have an NG tube I do hope it doesn't cause me as much pain as it did the first and second times.

Anyway, this year is the year I will hopefully recover enough to start enjoying my life. The year I start to get my quality of life back and actually start to live and spread my wings more. I try to stay as positive as one can do in this situation but don't get me wrong - I do have my tearful and down days where I wish I could just snuggle up in bed with my lovely pink tin of super delicious chocolate and let all of the chocolate fill me with happiness and joy (not nausea and horrible symptoms haha!) hey, at least now I can once again enjoy a little bit of chocolate and hopefully by next Christmas it'll be more than "just the one" Ferrero Rocher! Yummy!

Thanks for reading and I hope you enjoyed the update.

Lots of Love,
Koren xo