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