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!