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!