Magical Moments.

I have been one rubbish blogger theses last couple of weeks, but we all know that christmas is not a very quiet time for anyone! While I was still in hospital after having surgery, Ed and I booked a two night getaway to Innsbruck, Austria to especially see the christmas markets. With everything going on, and doctors advising me not to go I was so determined to get there! ...three weeks later and I was there and I couldn't of been happier, especially after having a cheeky cosy cup of mulled wine! It was so festive, with christmas lights beautifully placed and the sound of christmas carols being played. We spent the precious hours wondering around the cute local christmas markets, which had locals masterpieces. Before then, I had never been to the mountains and I was quite overwhelmed at how breath taking they were! One morning, and with six layers on...we made our way up to the top of the mountains in the cable carts to where we reached fluffy, crystal white snow! It was so magical and I was on top of the world and I couldn't of felt more away from reality and my dreams were coming true! ...If only the doctors could see me now! It was a moment I will never forget and its now locked away in my mind forever!

From a Small Surgery to a Big One

This has definitely been one of those weeks where you want to forget... Last Tuesday was meant to be a straight forward day, I had a planned surgery for a new JEC, adhesions taken out and a full thickness biopy taken. However, I should know with my luck that nothing ever goes goes to plan. I said my goodbyes to my amazing mum who stood by my side until I went to night night world, with the last words I heard from the anaesthetists, 'soon you'll feel like you've had a large glass of wine'...If only. Then when the surgeon went in there, my bowel was full of inflammation and had gone rock hard and also had a kink it in. He took all that part out making it quite a major op in the end! He put a new modern JEC in too and left me with lots of scars...any ideas for anything to help scars? I came around in recovery and lets just say...not very comfortable and in huge amounts of pain. But they soon got everything under control. Unfortunately I had to stay in recovery over night so they could keep an eye on me and by the next day I was moved to a ward and was put in my own room. 3 days later and I woke up, tried to freshen up with as little moment as possible, and sat in the chair to look as best as I could for when the doctors came around, despite being in so much pain still, all I wanted was to be at home in my own bed. My plan worked...such pro and by that afternoon I was aloud to go home and rest, because as all that needed to happen was for everything to calm down and heal. This really does show that you really don't know whats around the corner! And all you can do in this situation is to be brave. I must say the nurses all the way through from the anaesthetist nurses to the ward nurses were outstanding. They were so caring and attentive. Because of the wounds should I say, I couldn't sit up or get out of bed etc without help, and they were always there being so attentive. In times like this, I couldn't of asked for anything better, It helped keep me so calm and upbeat at hard times. You know, in this world the little things really do mean a lot and small things really go a long way. I think because I don't have a choice with my illness I really appreciate and admire people's support.

Home Sweet Home.

I have been free from hospital for 3 weeks now and everyday feels just as amazing as the first day I got home! You really do appreciate the little things, especially your very own comfy double bed with a duvet instead of the hospitals rock hard beds, with scabby sheets and blankets! ...no offence NHS! As you can see I couldn't be happier leaving the ward in the picture below!

Its been quite a busy few weeks since I've been home...opps as I'm meant to be taking it steady and doing all that pacing yourself mer-lark. But after laying in a hospital for so many weeks your brain just wants to go crazy when you're out...if only! But as Ed promised, I was whisked down to devon a day after I was home and taken straight to my favourite place in the world, sitting on the beach. There's something so relaxing about breathing in the sea air and listening to pure silence with crisp sea waves! I must admit it was pretty chilly but a few cosy blankets soon sorted that out. Those few days seemed like pure heaven after being in hell. However wherever I go at the moment I have to have my feed with me as I'm on it for 20 hours at the moment. Nonetheless this didn't stop me from not going to the beach now that it has its very own back pack! 

When I was coming to the end of the hospital stay, I probably got the best news I've heard in a very long time. I don't know if you remember, but when I was having botox done to keep the opening of the intestine open, one of the consultants who did the latest one said how bad it was in there, and that I had to have a dilation done. This is when they use a ballon to stretch the muscle open causing it to ripe open...I know, doesn't sound nice. They say you never know how long this way will last, but hopefully longer than having to have the botox down every three months. Since having it done its made eating orally so much easier as I don't get the nausea as badly...yayyy! I then got some pretty exceptional news from the dietitian that the consultants are now happy for me to try purees/semi-solids...yes you did see that right, that does say solids! Even typing that still feels very ser-real! After 2 years of liquids I get the green flag...THIS IS AMAZING! We couldn't believe it. However I'm not aloud anything with fibre in it, onions or garlic, not much red meat or nuts or seeds...ok so that does still sound restricting but who cares after only being aloud nothing! They call it a white diet, white bread, white rice, white pasta etc. Anyone who's reading this who's on a similar thing, ideas would be so valuable! On my way home from hospital we had to stop so that my relatives could got a cheeky well known burger place where I tried my first soggy chip in 2 years...

On a more downbeat hand, this week I got the phone call I've been dreading for a long time. I've got to have surgery next Tuesday...with just 6 days notice. This is the operation for a new JEC, taking the adhesions out, this is the narrowing part of my bowel from scar tissue. Also taking another full thickness biopsy and while they're in there they're going to have a look at this opening into the intestine. I'm already pretty nervous, but this will be a positive as hopefully this should help the pain because as at the moment, my left side is so painful from my JEC. So I've just got to be brave and go with my worries to one side and let them do what they have to do. In times like this all you can do is be a solider and not worry because its got to be done! My one wish for christmas this year is to be stable and be in as little pain as possible... lets keep everything crossed! x 

Week 5...

One week on...and I'm still here at UCL. Yes...it has been 5 weeks, and yes I have most definitely had enough! It really has been a right rollar coster this past week, properly due to the fact I haven't really slept well since I've been here, because hospitals really aren't the quietist of places to sleep! With new patients arriving, nurses chatting and ob's being taken at 2am...Yes that is correct!...2am! Tomorrow I'm going down to have a dilation done, into the opening of my intestine. If you remember I had botox done last week or so, but when they were in there they realised actually how serious it was, and they wanted me to have this done now. This dilation is when they infant a balloon inside, into the opening of the intestine to keep it open. One good thing about this, is that I won't have to have the botox done every three months as this is semi-permeant...yay to less endoscopes!...they're horrid! Hopefully this will help the nausea and enable me to have a little bit more oral too. Also, they finally got the results back from my full thickness biopsy which was taken last year! last year?! Wheres it been all this time...in a pickling jar or something?! Anyway, they have said its comes back abnormal and they want to take another full thickness biopsy when I have the surgery. I was been informed that the surgery will be done within the month hopefully, and it's being done at East Surrey Hospital. This is the surgery for the new JEC, another biopsy and also taking out a part of my intestine where it has narrowed so much from scar tissue causing problems this is called adhesions. I'm really not looking forward to this but it has to be done! But at least it's going to be done at my local hospital. This week really has been tough. Sometimes I feel I'm the only one going through all this, and there's no where to go. But I am lucky enough to have some lovely friends, who have similar conditions to me so we do tend to compare on a regular basis! I would hate to think there are people out there, who is reading this and doesn't have anyone to turn to? Because its a lonely condition and very limiting. But you've got to keep your head up high and keep trooping on, because there is always light at the end of the tunnel. I really do feel that you must set yourself goals, even if its as simple as getting strong enough to go on a little trip somewhere! Because, for me anyway if I know I have something to look forward to it always helps and keeps me motivated too. If you're reading this and want to chat or discuss anything I'm more than happy to listen and help, you can find my email address on my contact details page. This weeks picture below is when my brother Matt and the lovely Kate came to visit me! I hope everyones having a good week! keep smiling x

My days at UCL

One week on here at UCL and I'm just about hanging in there you could say! Every day I'm getting stronger and stronger and I'm not letting anything stop that! Since I last blogged, they've still decided for me not to have TPN (YAY!) and to crack on using the JEC. I'm still waiting to see the surgeons however they've now decided for me to have my op for my new JEC done locally because the waiting list here is 4 weeks as an inpatient...sod that! I should hopefully have the botox for the opening of my intestine done either the end of this week, or the beginning of the next week. I have to have this done every three months now which sucks big time as I hate having endoscopes with a passion. The botox they use is the same botox people have put in their face which I think is quite funny! I had the lignicaine infusion last Friday, and if you haven't read my last blog, this is an infusion which has anaesthetic in it to help chronic pain. The first couple of days I didn't notice anything different but then on the third day I noticed that my background pain had reduced ever so slightly, and when your living with chronic pain every little helps! So I now have to have this done every three months as it doesn't last forever. I've also been seeing the physio who are helping me with my legs. I have terrible de-conditioning muscles due to being in and out of hospitals for the last two years. They are wanting to send me on a three week in patient rehabilitation in London, but for that I need to be strong enough to get through it. So in the mean time, I have to have physio. I cannot wait to be strong again, I truly believe that people take their own bodies for granted, because you really don't now what's around the corner! Ever since I've been poorly I think to myself that I've just got to keep going and that I will be strong again to do the things I love! You've just got to keep your chin up and whatever is thrown in your face you've just got to keep trooping on! There's so many things I want to do now, which maybe before all this happened I wouldn't of ever have thought of doing before? Like people say things happen for a reason, even though this one is a rubbish thing to be put through! I want to travel the world, see whats out there, walk the Great Wall of China, drive down from Seattle to LA, go to Niagara Falls, volunteer in another country to help people's lives, the list goes on and on! I truly believe that in hard situations you must have dreams, dreams that will drive you forward and keep you going, evan if its a small thing as simple as making it to the beach one weekend or seeing a friend! Anything that will make you smile. Because smiling is definitely a form of medicine! Picture below is of my lovely brother Matt, (...typical face of his) coming to visit me!

Day 1 at UCL...

So I've made it up to UCL in London! I'm in a nice ward, way up in the sky with some lovely ladies which always makes it so much nicer. yet AGAIN I don't have a window bed, the amount of times I have to go into hospital and I never ever ever ever get a bed by the window! you're probably thinking why does that matter? But trust me, when your stuck in a box a little glimpse of sunlight from the window, can easily keep you sane! But anyway, one does not need to moan about it now and I've just got to get on with it! I had a busy day yesterday, literally as my eyes opened, I had doctors, specialists dieticians all here waving around their magic wand! Firstly, I saw the chronic pain specialist consultant who after going through everything, they came back to me and have decided they want me to have the Lignocaine Infusion which is a drip you have for two hours which has anaesthetic in it. It helps some people, and it can last up to one month! So we'll see if that helps! Also they recommended me to try using a TENS machine (Transcutaneous Electrical Nerve Stimulation) This works by mild electrical impulses being sent via pads on the skin at the site of the pain. These electrical impulses then work by acting on the sensory nerves to stop the pain signals reaching the brain. I must admit when I first tried it, it felt like tingling buzzing feeling, and so far it hasn't helped me but it's still early days, so we'll also wait and see! I'm on so many pain killers and I'm not keen for them to just keep increasing them so I'm really hoping this infusion helps because that would be amazing to get the pain under control! Also I saw the dietician, who I've met before and she's really nice. Again, we went through everything and she sorted out a plan for my feed for my JEC. Then I saw my specialist consultant too. I cannot believe I'm saying this but she told me because ever since they've increased my feed I have gained 1kg! BOOM. So they're going to see how the next week goes before we decide whether we have to go down the TPN road, because that really is last resort. As everyone knows I really don't want it, so fingers crossed my body can tolerate it. Also I've got to see the upper GI surgeons regarding my JEC and hopefully they can sort it out! So please cross everything possible! My day was made yesterday when my lovely friend Nikki came and saw me (sorry to name and shame you!) It is so nice talking to someone who knows exactly how you feel as we both have EDS, POTS and Hypermobility Syndrome and other things too. Also because I'm in a specialist intestine failure unit I've met some fab ladies in here who have similar conditions to me. You know, it really is reassuring that your not the only one going through this and if you're reading this and you yourself have any similar conditions or anything you want to open up to, I'm more than willing to help you. Right I need to carry on laying here so I'll let you get on, but I shall keep you informed on everything! Picture below is of myself and my big brother Matt visiting me at East Surrey Hospital...keeping my chin up because when things go wrong you have to pick yourself up and thats exactly what I'm trying to do! Have a nice day everyone! x

Its been a while...

I have been a rubbish blogger to you guys, and I can't apologise enough! but I promise I will try my best to fill you in and keep you updated on everything going on... I'm currently in hospital at East Surrey Hospital and I'm waiting to be transferred back up to UCL. The situation at the moment is that they are wanting to put me on TPN (fed through the veins) because of the occurring infections and discomfort from my JEC. Also they got very concerned about my weight due to the past months of my intestines getting worse and being so impaired from adnominal pain and nutrition. Because of this too, it means that I cannot go through the 3 week in-patient rehabilitation for the de-conditioning muscles and surgery for my new JEC because I'm not strong enough at the moment. So I'll have to be on TPN for a couple of months to hopefully get me strong again. I must admit, I was putting up quite a battle for not wanting to go back up to UCL, because of it being so far away and I couldn't understand why they couldn't do it here! However after talking to my consultant down here and going through everything with me he said I have to be on an Intestine Failure Unit to help me with everything as the case is so complex. I now have got my head around everything, but I must admit I wasn't a happy bunny when I first got here, I was definitely throwing all the toys out of the pram! But like anything thrown in your face you've just got to get on with it, and keep going! When you don't have a choice you've just got to put on a brave face and keep pushing on. I'm sure each time I go into hospital it gets harder and harder for me, as I hate being here but I know deep down it will make me a stronger person! Like anything in life the things you find the hardest will make you a tougher person because you have to find that little something inside you to get through it. All I ask is to be better, or is that too hard to ask is it? There are moments when I think to myself why me? What did I deserve to get all of this? But I wouldn't want anyone else I know or anyone else to go through what I do! and if I can help anyone else who needs to talk about anything then you know where to contact me! If we all pull together in the hardest of times like this as patients then we will all get through it, i truly believe that! I look around this ward I'm in now, and I know I'm in a hospital but everyone's faces in here looks so sad and I hate seeing that. I must admit I am feeling the same, but shouldn't we all be helping each other to pull through this hard time? As the doctor said to me today, 'you've spent a lot of time in hospital haven't you!' Yes I have, and now please lets stop it as I hate it so much! If anyone who's reading this who has been on TPN before or knows any more information about it, I would be so grateful, I always find that talking to people who have been in a similar situation knows exactly how it feels and that is precious. Last week, Ed and I had planned to escape and go down to Devon for 4 days and I made sure the doctors would let me go down before I had to come in...even if they did ring or emailed me most days! However I tried my best and it was so lovely. My favourite place is sitting on the beach, I find it so peaceful and you can think so freely! Below is a picture of me there, enjoy a cheeky glass of bubbles, all wrapped up in blankets, watching the sun go down...magical. Anyway, I better stop typing away and let you get on and I'll update you how everything goes very soon!  x

Every little helps

I can't believe I'm typing this, and if I'm being honest I'm quite speechless! But... you amazing people have started raising money for me to have treatments, equipment and extra help. People really do have big hearts in this world and I feel so humble. We all go from each day to day and hear about kind generosity, but it really does take a lot for someone to actually take that first step and to start organising a sponsored event! From the beginning I never thought in a million years that friends, family and even kind souls who don't even know me to put together their money to help me. I want to put every single penny to good use and I will try and share every moment with you so you don't miss out! Even at times like this when times are hard, it's amazing to have such great support around me and I can't thank everyone enough! I really don't know what I would do without all you lot, and you really are simply priceless! which is something that no money will ever be able to buy. The first thing we have put the money towards is this Donnerberg Body Massaging machine to help weak tight muscles, blood circulation, improves the nervous and immune system and promotes equality of sleep. This is great and it is going to be put to good use as it can hopefully help my weak muscles, help my circulation for my PoTS, and I hope relax the muscles in my whole body. I want to say a huge thank you to everyone who have put their money together to help me with things like this! You have no idea how grateful I am, and as you can see below in the picture, you have put a big cheesy smile on my face for a few seconds! x

Another one to add to the list

I feel at the moment all my posts are about recent consultations?! So many at the moment. I do apologise! Last Thursday I had a hypermobility consultation at UCL hospital in London. This was to do more with my bones and muscles, and for once my poorly tummy didn't have to be painfully prodded around with! After many months of being in and out of hospitals my muscles have become deconditioned, basically they have vanished...literally none existent. They've got so bad that they have become very painful, especially at night and the way I describe it is it feels like I've got something crawling around inside my muscles...does that sound weird? Well its true! Im also very weak and daily chores are sometimes very difficult for me. I have recently started seeing a Personal Trainer to help strengthen my legs again however, this consultant decided that I have to go and have a 3 week inpatient rehabilitation. How do I feel about this? Well...it needs to be done and if I want to get stronger I have to go through this. I am aloud home at the weekends so its not too bad. She also said I just fall into the category of having Hypermobility Syndrome. This is quite a common condition, and it means I'm a bit flexible but with some people it can be quite extreme and they can dislocate bones in and out of their joints. At the moment so much is going on and I almost can't keep up with it all! But, with the help and support from everyone around me, they are the ones who keep me going! I really don't know what I would do without them, and they really are amazing! I must keep my chin up, and always stay positive!

TPN you will not win!

Reaching the end of this busy week, I thought I would do a little post informing you on whats been happening. On Tuesday I had a consultation with my nutrition consultant. This was organised because the big question was whether I had to go onto TPN (feeding through the veins) due to my intestine failure. For days now, myself and everyone was not supporting this suggestion firstly, because we think that it is the last option and I feel I'm not there yet. Also it would mean much more restriction and distract nurses coming around everyday and lastly, I had TPN last year in hospital and I got a terrible blood infection from it, which has left a foul note about it. Luckily, this consultant was on the same page as me and agreed that TPN was too early...pheewww. He did however say that there might be a time in the future when I may need to have it. So the big question was now, what's going to happen with this terrible JEC now? After having 6 infections with it since March, they have decided I have to have a new JEC put in. So I am now waiting to see the sergeons for the surgery of this...which I hope they get their arses into gear about it soon, as I can't bare another infection on top of everything at the moment! The pain and sickness is aweful at the moment. When mentioning this to the consultant he said that would be due to the intestine not working, Which for me is especially in the colon causing massive amounts of pain. Recently I've been trying to have things orally and I had come a long way after not being aloud to eat for a year! But now... well, its just tourture. I already have a lot of pain and then get even more pain and sickness on top of that when eating, so unfortunately I've gone back a few steps. But I must keep my chin up! This is all such a roller coster and I must just keep going. You know, I've learnt that even at the worst of times, you cannot think about it too much. Being told all this serious stuff can try and push me down but it will not win!!! Again, anyone reading this who needs any help or support you can contact me via my contact details. I'm always a click away! This picture may be a bit random, but I just had to share it with you! A beautiful bunch of flowers arrived at my doorstep from my friend Phoebe. Made me smile, x

Stronger.

Last sunny Wednesday, may have been a normal day for you but for me, it was the day I made a massive stepping stone. It was the start to me hopefully becoming stronger. After many months of being in and out of hospitals for long periods of time, and many long days where I was too poorly to even walk a few simple steps, my once running-miles-fit muscles are now gone. All which is left is a twig of a leg with a wafer thin slither of muscle. The de-conditioning of my legs for me, is a sad aspect, for many of you, you would remember me being a crazy gym freak, running miles and always talking about the most up-to-date exercises! ...but how things have changed! Now I struggle to do the most simple of things, but after many days thinking about this, I've realised that you have to accept something in order to deal with it, and for me this means starting this Rehabilitation. I know I'm still on a long road,  but I need to get stronger in order to keep going, and for any of you reading this in a similar position, you must find that little something to push you to do this, which I know is inside you! After having the first meeting, I've come away feeling extremly positive, and if I want to become strong I'm the only one who can do that for myself! I may not have a choice with everything else going on with my tummy and all the diagnosis's but I can show it that I'm a fighter and who's boss! I really do think enough and enough, I may be starting with a couple of simple exercises, but I'm prepared to make the time and get some foreign-like-muscle again. Another point we covered was nutrition, and I will do another post on my blog soon covering this! Lately I've been focusing on this quote quite a lot and I thought it was a great one to share with you guys...

It does not matter how slowly you go as long as you do not stop - Confucius

No matter what it is your fighting in your life just know that everyday is progress. Baby steps are great and you shouldn't be hard on yourself if sometimes it seems too hard. One day you'll get to where you want and you'll be back on your feet! Have a lovely week everyone! x

Support is Priceless

I thought it was about time I wrote a post about support. Without this support the last year and half would have been extremely tough. I'm going to start with of course, the most amazing family I have. They've been through everything with me especially my parents. I just couldn't even think getting through anything without them. All those times I've been in hospital and my mum would come and see me every day and be by my side, saying everything will be ok and that I will go home soon because for anyone of you who know me well, know that I hate being admitted into hospitals...well, who does?! I just feel like I'm trapped there and I can't get out. I know a big reason for this feeling is that when I was in East Surrey Hospital last year for 6 weeks, there were moments when all I wanted to do was is to go was home, again it happened when I was in UCL Hospital in London at the beginning of this year for 5 weeks. I remember one evening there, when I refused to go back to the ward because the thought of another night was just too hard but, with the support from Ed my boyfriend that night I did go back and I did keep going. This brings me onto my second amazing support guru. Ed, what an amazing chap he is. He's been there through it all with me and I'm so lucky to have him. He would do anything for me, those days when I'm struggling he would be there in a flash to give me a big hug and tell me everything would be ok. He's seen me at some of my worst times, unable to talk, laying there in a hospital bed so poorly, and he would be handing my hand, stroking my head and telling me everything would be ok. Again, I just don't know what I would do without him he's one in a million and I know he would say he isn't, but ed you are! and I love you very much. Next its all those special friends, there are those ones I've known for years who are simply irreplaceable and are always there for me, and then there are new ones I've met when being in hospital. We all have similar conditions but are all so unique, we all help each other and are all so willing to be there for each other on those days when we are really struggling. Even though everyone knows how you feel, friends who are in a similar boat know exactly how you feel because they've been through a similar experience. There are a couple of really close ones who are absolutely amazing, and really are inspiring. Nickie and Michelle...sorry to name and shame you girlies! We met in January on T9 at UCL Hospital in London. It's rare you meet such lovely people in those situations but one good thing that came out of that horrible hospital stay was meeting these two! Their stories are ones that make you realise how incredibly brave they are, and they always help me get through so many hard times since then. Since writing this post I've realised I've written a lot, that people have told me 'everything will be ok' because even at the hardest of times everything is ok, however long it takes you've just got to keep going and being as brave as you can! If you're as lucky as I am to have support like this, never take it for granted and if your a well bunny then never let a day go past, when you don't give those amazing family and friends a hug! I believe that love has power over people and you should show this as much as you can. Keep smiling and lastly, it's all about your thinking - if you're positive and believe you can do something then you'll be able to take that first step and get through anything.

Laughter is a Medicine.

I've been a bad blogger after I said I would do a post in Devon however time really does fly by! So I do apologise! Shall I start with the health side? The weekend before we went down, I unfortunately and perfectly timed got another...yes another infection in my JEC. That would make it my sixth? I've been having phone calls from my consultants ringing me in regards to that situation. At the moment it stands that I have to go to UCL to see my specialist consultant along with the nutrition consultant. If I take you back to the week before when Ed and I were sat having a coffee and I had come to realise that I knew I would be having the NJ for at least 3-4 months, because I'm still a long way off so I agreed to having another JEC put in. That afternoon my consultant rang me and I told her my view. However, she then come back with saying that due to my condition it may be time I had TPN because of my intestines. (fed through my veins). HOLD ON ONE MINUTE. I'm not at that stage yet, I'm only 22 and I don't really want that, especially as when I had it last year in hospital it nearly killed me with a blood infection! Also it would mean nurses coming around everyday alongside having a pic line put in (long tube going in your arm into one of the veins going to the top of the main artery before reaching your heart). I just feel this is the last option and I feel I'm not there. It would really restrict me and I really really really really don't want one. Ok....rant over. So in over a week I'll be having this consultation to come to the decision. But now I can tell you about the fun side. Devon! It was lovely, we were only down there for 3 nights, but that was long enough to recharge the batteries and to take anything on again! Bring it on is what I say! One of my favourite moments was watching the sunset go down on the beach, all wrapped up in blankets, priceless! Also meeting some friends for a drink down the river, we took the little boat down with an amazing blue sky and beautiful sunshine beaming down on us, it was so nice and then sat on the pontoon chatting away! Laughter definitely is a medicine. I've definitely realised that even in hard times, you've just got to keep going and you will get through it. I must admit before we went down I was struggling a little because my brain felt like it was close to exploding but now, I'm back to being a solider! With everything going on sometimes you just have to take a step back, take a deep breathe and then return ready to take on the world! I would be so grateful for anyone who knows more, or anything about TPN or who has been in a similar position because my ears are open to all!

Strength with Nutritional Drinks.

After many people asking me about different nutritional oral drinks I thought I would do a little post explaining about the different brands with their pro's and con's. Firstly, I'll update you on whats been going on my end. Since I last blogged things have changed, I had complications with my JEC and I was suffering with many infections from it and I was told it had to come out ASAP. However, they said I had to have an NJ placed (a tube down my nose for nutritional feed). But, I said a big no to that because I didn't want to have one. Last Wednesday I had an ultrasound at UCL where they saw all around the JEC inside was all inflamed. After many conversations, discussions and phone calls from my consultants it now looks like I don't really have a choice but to have an NJ placed when the JEC is removed. This would be temporally while I recover from the removal of the JEC and to for my weight to be stable. I must admit, I really really really do not want to have an NJ but sometimes I guess you just have to go with the flow! The other option which came to the table was about having TPN (feed through my veins) however I definitely don't want to have this, as when I had this last year in hospital and it nearly was bye bye to me because I got a blood infection! I've been trying really hard to have things orally and I do feel I have definitely improved from a couple of weeks ago when I was only just started to eat things for the first time in nearly a year. I'm only aloud soft foods, including no skins or seeds and liquids. This leads us nicely onto nutritional oral drinks. These are supplemental drinks used for medical purposes. They contain everything to help nutrition for the body. They are packed with calories and a 200mls bottle contains 300 calories. Over the last two years I have tried many brands, which I must admit some tasting not the best...well, disgusting actually. I started on complan, which you can buy over the counter and is good make and doesnt  taste isn't too bad. It comes in vanilla, chocolate, strawberry and banana flavour. It makes around 500mls and has 250 calories in it. I think this is a lot of liquid especially when your very poorly, which means sometimes you cannot consume a large amount. When I met my first consultant he wanted me to be on Fortisip. This is a 200ml ready to drink bottle, which comes in chocolate, strawberry, banana, vanilla and caramel and gives you 300 calories. At first the taste wasn't too good, however it was the first time for me trying these sort of drinks, so I soon got used to them and could tolerate them. When I was at UCL the brand they used in the hospital was Ensure Plus. This again was a 200ml ready to drink bottle which comes in chocolate, strawberry, vanilla and banana flavour and has 300 calories in it. I found this very similar to Fortisip, however the taste is maybe slightly better. Also Ensure do a drink called Ensure Compant which is a 100ml ready to drink bottle with 300 calories in it, but the only flavour it comes in is vanilla. I struggled with this one a lot because the taste was not the best...well, awful. But the size is so small, it is very convenient for people who can tolerate it. One time when I was at East Surrey Hospital I was given a nutritional drink called Calshake, which a lot of cancer patients use. It makes 500mls of liquid with 500 calories in it. I know...wow! However I found this a very rich and thick and I couldn't tolerate it especially with so much of it, it would take me the whole day to drink it! I'm now on a brand which was advised to me from a friend I met in hospital which is called Nutriplen. This is a 125ml ready to drink bottle with chocolate hazelnut, strawberry, vanilla and banana flavours and has 300 calories in it. The only two flavours I like is chocolate hazelnut and vanilla, the other two are not great however the other two are definitely the nicest I've ever tried from everything else. Also being small I can manage to nearly consume the whole bottle which is a win! There are many other brands out there which all do the same job, but a lot of hospitals/consultants have their favourites to advise on. These drinks have been there for me when I have been scrapping through hard times being really poorly and I could only manage sipping on these. When your going through difficult times, you must keep going and these drinks are so good on keeping your strength up at difficult situations. If you know of a brand which you think is great and would help others, then let me know so I can share!

What is PoTs? Let me tell you...

I got diagnosed with Postural Tachycardia Syndrome (POTs) in January 2015. I must admit, with everything else going on I was a little surprised when they informed me about this too. I have problems with my tummy and bladder which had taken centre stage, so I had to learn how to adapt my daily life with this condition too. PoTS is the abnormality of the functioning of the autonomic nervous system and can be a life altering and debilitating chronic health condition. Simply standing up can be a challenge as the body is unable to adjust. Symptoms include headaches, fatigue, palpitations, sweating, nausea, shaking or tremulousness, shortness of breathe, visual problems, fainting and dizziness. These are associated with an increase in heart rate from the lying to upright position of greater than 30 beats per minute, or a heart rate of greater than 120 beats per minute within 10 minutes of standing. For me, I experience severe head rushes, palpitations, shaking and collapsing so standing up quickly is definitely a no no for me. Straight away I was put on medication called Fludrocortisone which is steroid. Unfortunately it hasn't been successful yet. I'm just about to be started on a new medication called Midodrine to see if that helps (fingers crossed!). There are also non-pharmacological methods too. Firstly, for a lot of people symptoms tend to be worse in the morning, this is because their body has been laying down for a long period of time and adjusting to the upright position takes longer. Many suggest getting up slowly in the morning. For me, on a normal day I would firstly sit up in bed for an average 5-10 minutes (if I'm not in a rush) and then I would sit on the edge of my bed for a bit and then slowly stand. Before I used to just sit there singing to myself and let my body adjust but recently I saw my specialist and she told me to pump my legs up and down or squeeze my calf muscles, so this would help push the blood faster around my body to my brain. However I must admit I haven't found these beneficial yet but it's still early days! Next, rapidly moving from laying or sitting to standing position is dangerous again this is due to the body not adjusting to the movement quick enough. Depending on the time of the day, I have times when I can stand quite normally or times when I have to take it slowly and not bounce up an excited kid! Also, dehydration is a massive factor, because fluid will increase circulatory volume and blood pressure. You are advised to drink between 2-3 litres of fluid per day, which is a huge amount but we are made up of 60% water which makes it extremely important, for any person! I must admit I'm not the worlds best at this, I do struggle to reach this target but when I can I try and pour as much down my throat as possible! Salt is also another suggestion specialists suggest, because this helps boosts your blood pressure, they recommend you to have between 3-10g per day. Heat causes blood vessels to widen thereby increasing heart rate and symptoms. Most people find symptoms are worse during the summer. I know a few tricks of the trade to help. Firstly, further increase salt and fluid intake if you feel hot or start to sweat more. Have a spray bottle of water at hand for your face and neck. Also a fan can be helpful, especially on those warm evenings, and we all know how that feels! Also avoid taking prolonged showers or baths, as this dilates your blood vessels, thereby increasing symptoms. For me this is a big problem and I've had a couple of scary moments where I have collapsed which is definitely something I don't want to happen again if i can help it. I've been told that taking in a glass of cold water in with you and sipping on it in-between can help or purchasing a shower seat so that you can sit down and not be at high risk of collapsing. Lastly, fainting is scary symptom but it can be avoided by learning to take notice of early warning signs such as light-headedness, dizziness, nausea and making sure your doing something about it. Obviously laying down immediately will make sure you down inviolately fall down. If your circumstances make this difficult I've been taught to cross your legs while standing or rock up and down on your toes, or clench buttocks (yes, really) and abdominal muscles or clench your fists. The one that works for me is crossing my legs and you won't look too odd when doing this so no one realises, result! Furthermore, the risk of fainting can also be minimised by coming up from laying to standing slowly or sitting for a while first. Avoid prolonged standing, or sitting so fidgeting is the key! Avoid having your hands over your head for a prolonged time as the heart needs to work harder thereby increasing tachycardia. There are others which I have mentioned previous, such as time of the day, dehydration and physical exertion. Everyone with PoTS is different and you definitely have to adapt to the condition. You must learn to try and be in control of it, however you do have good and bad days and unfortunartly you can't pridicte when they are! I've met some lovely people who have this condition and they really have helped me with coming to terms with this. Like I said at the beginning, I didn't see this condition coming and I'm still trying to keep it under control. However I think I am slowly getting to grips with it because at the start, it really does try and catch you out! But like everything you must keep going and never let anything beat you!

This is just a brief outline of PoTS, but if you know someone who has this condition and you want to know more or you yourself, have this condition then there are two great websites to have a look at. When I was in hospital, and I was informed I had this condition a lovely lady in the opposite bed from me, who's now a friend, who also has been condition walked over to me and gave me a piece of paper with the names of these two websites on it, so that I could come to terms with it. That is something I'll never forget because it meant a lot and it really helped me in that situation. So now, I want to pass it on too, so please have a read.

POTS UK - www.potsuk.org
STARS - www.stars.org.uk

One last thing... if you want me contact me regarding anything about PoTS i'f love to hear from you.

Bumpy roads make you stronger.

It's been a crazy couple of weeks, so I apologies for the lack of blogging! I'll take you back to a few weeks ago when my JEC was on its 4th infection and the antibiotics were no longer helping, or should i say not killing the alien inside me! I was informed that I had to be admitted into UCL London hospital. I become almost scared to check my emails, because I knew that one would be from the doctors! That is definitely one thing I would say I hate the most, is knowing your going to be admitted and just waiting for the date. While we're on this subject I also hate that feeling of being stuck there, it just freaks me out every time but I just have to think to myself I've just got to stay positive! If you've ever been in this position, then you know exactly what I mean! After a couple of days I had received the date of my admission. Also, I was informed that I had to have an NJ put in (a tube down my poor nose into a part of my intestine for nutrition...yes, this is not very nice). I've had one before last year when I was really poorly in hospital before the JEC was inserted. After many long chats over cups of tea with family and friends, we had decided that I didn't need the NJ and I wanted to try and maintain my nutrition orally, because I've had so many tubes everywhere for after a long year now. One reason why I didn't want one, is because I just want to look a bit normal and feel like I fit in. A second reason is that I've been trying so hard to have things orally. I know i'm still at the beginning of the road, and I'm not aloud certain foods or evan think about touching anything solid however you know, pureed foods and supplemental nutrition drinks aren't too bad once you get used them. I just want to prove to the consultants and everyone that I can do it. I know my body is still not great, but I'm trying my best to get on with it and is by having a tube down my nose going to help this? no. I don't need it. Good bye to tubes is what I can!

Yesterday, I had an appointment at The Royal London Hospital for Neurology at Queens Square for my POTs (Postural Tachycardia Syndrome). They have started me on a medication to try and help this condition, as well as a steroid I'm already on but hasn't been successful yet. I will do a separate blog soon talking about this condition because not many people know much about it, and I feel people should. I'm lucky I have met some lovely ladies while being in hospitals, who have similar conditions, and they have been so amazing telling me about everything I need to know, so now I want to share this with people out there who might be struggling with this. One thing I can tell you now is that you must never let it beat you and to always keep your chin up!

Keep on going

Where to start. The last 14 days have definitely been a tester for me. I was aloud free... discharged from hospital on the 25th April. However, I then had to go back, for another MRI a week later; the long incredibly loud tube or should I say tunnel of boredom, unless your lucky enough to have music which is normally the ever so not delightful classical songs. Each day the pain was getting worse and worse and by this point I was crippled with pain (yet again). I saw my consultant who let me know I now also have an abscess growing inside me, which has now caused me to have my 4th infection around the JEC. But I will not let it beat me and I will keep going! Luckily I didn't have to be admitted back into hospital (YAY!) and I'm on the antibiotics for 2 weeks to try and get this horrible alien growing inside me down. This Friday I am having the botox into the opening of my intestine done, due to it not working correctly. This will be done in the endoscopy department by my consultant who did actually say he would film this, but I'm not really sure I want to see my insides, do you?! Grim. At some point I will do a blog talking more about what I can't have due to a large part of my intestines nerves not working, I currently get my nutrition through a JEC, this is a tube which goes into my jejunum which a feed goes through at night. Through my travels in and out of hospitals, I have met quite a few people who also have this treatment. I know a lot of lovely people, who I feel need more support, especially young adults. I am not aloud to eat anything solid, only liquids or purees (maybe a cheeky suck of chocolate now and then but shhh) however, it has only been the last couple of months I have been aloud this. I went 1 year without being aloud to have anything oral. So getting back onto small things has been much more difficult then you think. I must admit, I must have been a nightmare of a patient. Anything that tasted too strong, too sweet, too sour, too thick, too creamy, too salty, too cuimny, too hot...yes, I was definitely a nightmare. I had to start on baby food... now that is bland! Then onto formage frais and jellies and I'm now at a point where i have simple soups, fromage frais, ready brek, mouses and jellies. Both my dieticians at UCL and East Surrey are amazing. There is a lot of special medical foods out there for nutrition. At the moment, if you are in a similar situation you've properly heard of these, I'm having Complans, Forisips and Fresibins or you can get 'Ensures' too and there are many other types that companies do but they all do the same job. They're a liquid nutrition drink, that are not the best tasting I must admit, but they are full of everything you need and are packed full of calories! Last week, I received recipes from my dietician where you incorporate these drinks into soups, smoothies etc to make them more substantial. I'll talk more about all of these when I do the blog. However, anyone with  feeding tubes or any nutrition problems due to medical situations, I'm here to help. I'll leave my email at the bottom where you can contact me, even if you simply need to chat because I know how tough it can be, with tubes all over you. I've had NJ, NG, and now a JEC and I'm still a long way from the finishing line however, I have seen a lot over these past months in and out of hospitals, and I really do believe that knowledge is power, and this can help other people. Ok, beautiful ones, I'll keep you up to date when I can, about my journey but in the mean keep your chin up and always think, there will be light at the end of the tunnel and it will be ok.

eloise.k.smith123@hotmail.co.uk

Identify your goal

I'm back home guys, there's nothing better then coming back to your own comfy bed after sleeping on a rock hard hospital bed. At the moment I'm waiting for an urgent MRI which will then hopefully explain the hideous pain, which they think is an abscess or a hernia to go with all my other problems. With every movement I get a crippling pain which gets worse the more active I get, it is horrible. However at least I'm back at my cute little home in the warm where I know I won't get woken up at a godly hour to have my obs taken. After this week I've definietly realised, that you need to just keep going whatever is thrown at you. There is no point being negative because where does that get you? nowhere. On a much brighter note, my brother has set up a clothing brand which he wants me to be a part of as the Head Stylist. When I got home, I was surprised with my very own desk in the office. Such a small thing is such a massive honour, I couldn't of had a bigger smile. So at the moment I'm sneakily typing this on my very own desk! With everything going on, this is such a good moment for me. Even though I may be in pain, feeling unwell, and struggling I am still determined to help and put all my heart into this as it is such an amazing business which I want to be a part of. The past week I have thought that there is five points you need to succeed in anything in life. 1. Identify your goal - for me, this is to keep going through all this horrible health issues and succeed in this clothing business. 2. What is standing in your way. - again, this would be my tummy however I've now realised I want to control it, and not let it control me. 3. Break it down - you've got to think about everything in small chucks. In order to achieve anything you've got to see things in small sections, which you can then achieve. 4. Build your team. - I truly believe to get through anything, you need your friends and family around you. Without them in the past year I don't know how I would of got through it. You know those days when you're really struggling or you've got bad news, you know that your family will be there to give you a big hug and will always tell you everything will be ok. 5. Deliver Success. - Always know you'll get through the tough patches and come out the other side. A big moment for me, was when I got through six weeks of being in hospital and was aloud home. A feeling that only if you've been through it, will you know how it feels, simply incredible. Also, remembering that even if you fail you must keep going, and you must always think, you must achieve the impossible!

One word can change people's life within seconds.

What a week its been. I was re admitted into East Surrey hospital last week after long hours of agonising pain crushing me down unable to walk, or even move an inch. I just feel at the moment I go forward one step then take two steps back but I must keep going. Within the last month I have had two infections and this one being my third. However, after having an ultrasound to check around my intestine and the JEC, they have found something else which at the moment is either an abscess or a hernia. I'm starting to feel a little bit like a boxing cushion, which keeps getting hits from different directions however I will not let these hits get me down! I know the doctors here are great and I know that every decision taken will make things better. Today I was told I may have to go back to my specialist hospital in London at UCL. I must admit being up there is far harder due to family and friends not being just down the road. In this situation, you really do need a hand to hold to help keep you pushing on and up there you definitely have to be more of a tougher person. However has this made me a more stronger person? I really do feel people in this world take their own bodies for granted. Today a lady opposite me was told she had terminal cancer. This shows how one word can change people's life within seconds. She's definitely a lady to admire to i must say, she sat there held strong knowing she must stay positive. Also to the left there is old lady who has dementia. A condition which effects the brain and means she forgets things. I know she still remembers incredible memories in her life and I see her looking through a book of photos her family have put together and I see moments when she kisses the photos capturing dashing memories. Her family will come in and take her to the garden in the sunshine however she would forget these times so they would kindly write these times in a note pad which she keeps with her so she remembers precious memories. I want people to know, that you need to appreciate every moment and never take anything for granted. I will keep you informed, but one thing I do know is that I'm going to stay strong!

A Journey to a Stronger Me

Its been a long year and a half down a tough road, however has this made me a stronger person? I was a perfectly normal twenty year old who loved partying, working hard and never said no to a gin and tonic! Then in a flash, a big door slammed in my face... I was hit with agonising pain in my tummy twenty four hours a day, day and night, every blink I could never get away from it. In the past year, I've spent four and a half months in hospitals, seventy two long lonely nights, twelve thousand and ninety six painful hours. I had developed Autonomic Disfunction in my intestine and then I found out I had Fowlers Syndrome in my bladder and PoTS (Postural Tachycardia Syndrome). Life has definitely changed for me. However, I do believe that everything which has been thrown in my face I have come out the other side a much more stronger person. There were moments i'll never be able to get out of my mind, laying there scared. I built walls up around me which would get crushed down, but somewhere inside I would have to find something in me to keep pushing on, to put up walls stronger than before. I am now a person, who never takes anything for granted and even if you fall, you must pick yourself up, brush yourself off and keep enjoying every possible moment, because you don't know whats around that corner... This is my first blog, and its only a brief outline of everything... i'm sure there'll be many more to come.