Alone In The World - Isolation

Good morning, afternoon or maybe even evening,

who knows what time of the day it is that you're reading this. 

I wanted to talk about something that I have felt during my health problems and even before. It is something that you can feel whether you are healthy or not and could be anywhere from school to work and by family or friends. Isolation. 

Isolation is a horrible feeling to feel, but, it is one that most will experience at one point or another in their life. The thing about isolation is that you don't necessarily have to be physically on your own in a room. You could be in a room with 20 people or even 100 and still feel isolated.

During my illness in particular, I have felt so unbelievable isolated at times no matter what people that care about me have done or said. You see, as I've mentioned before, I am Jewish. Being Jewish makes having difficulties in eating extremely hard. Food is a BIG thing in the Jewish religion. Everything is celebrated around food and gatherings all involve food. Recently it was Rosh Hashanah and Yom Kippur. Two big things. Rosh Hashanah is the Jewish New Year and every year for as long as I can remember, my whole family get together in the evening for a big meal to bring in the New Year. And the same thing goes for Yom Kippur. To end the fast, everyone gets together and has a big

meal to end their hunger pains after not eating for the entire day. Wouldn't it be nice to be able to do that :(. Anyway, back to the point, for me, I don't feel comfortable to go there and sit and watch them all stuff their faces and talk and laugh and then get up from the table and eat some more snacks and desert. Having said that, staying at home on my own is also uncomfortable and makes you feel isolated. There is that dilemma. If I go, I feel isolated and uncomfortable but if I stay home alone I feel isolated because I am not with my family and missing out every time. What do I do? Whether I am there with everyone or at home alone, I am still uncomfortable and feel isolated from my own family which is not their fault but how it is. The worst part is, even if I was so get a friend to come round or go out with them, it doesn't change the fact that I am feeling isolated from not being able to join in with family gatherings because everything involves food of some sort. It is just the way of life.... especially Jewish life. 

Even when people change their plans so it doesn't involve food and can mean I can join in, still leaves me feeling bad because I have gone and had to change everyones plans or birthday traditions for instance. I wish I could sit here and say I have found a way to stop feeling isolated so that I can share it with you all, but, the truth is, I haven't. I WISH I did. I feel isolated from friends sometimes because where as before we could go out for dinner in the evenings or get take away, we can't anymore. Sometimes that means I stop getting invited to things (for when I am well enough to do something). If you think about it, everything usually involves food at some point. You go out for dinner, get movie and take away, you go to the movies and get popcorn or even to the shops for a day and stop of for lunch. For someone that has nothing wrong when it comes to eating, they're all things you don't even think twice about. However, for me and others who do have difficulties with food, so much thought and feelings come into it. I stopped watching as much tv as I used to and why you ask? Well I'll tell you. Next time you're sitting there watching tv no matter what channel you are on, when the adverts come on, count how many of those adverts are about food. I did it with my mum the other day when I was talking about it with her, and 5 adverts in a row were to do with food of some sort. Now, for someone who is sitting there starving and can not do anything about it but REALLY wants to eat a nice meal, it is HARD and makes me feel so uncomfortable and just not a happy bunny. It stops me from wanting to watch tv in the evenings with my family, so I end up sitting in my room alone on my laptop. Does that help me or my mind? I don't think so :(.

People can feel isolated no matter what the situation. It doesn't have to be about food, it can be anything. From panic attacks to bullying to being new in a job or after school activity. We need to find a way to help and make sure we never make someone feel isolated no matter what the situation. 

Recently, before my tube came out, I went to two different activities in the evening after work. One of them I felt so comfortable from the very first time I went and didn't feel like I was different or new to the group. The other one, as lovely as everyone was and as much as I enjoyed it, I just didn't feel as comfortable and was quite self conscious of my tube. I have no idea why, but it is just how people act around it all I guess. It is a weird feeling particularly because you can feel it whether you are physically alone or with people like I said at the beginning.

I don't have a particular point to make within this post about this subject. It is just something that I thought I would put out there and make people think about as I have been feeling very isolated and when I talk to others who say they're feeling isolated it makes me want to do something as I know how it feels but there's not always a way. Sometimes we can talk and discuss how we feel and what is causing it and if we feel the same it helps a little to know that I am not alone or crazy or over sensitive or something. 

If you are feeling isolated, try talk to someone who is feeling the same. Even though it won't necessarily change the fact that you are feeling isolated, you'll at least know that you are not alone or crazy or being silly.

I don't know if this post is helpful or pointless or even makes all that much sense, but it was a topic that I really wanted to discuss. I also thought that maybe, if you want, we could all share tips that you may have picked up if you have felt isolated or ones you have to help someone who is feeling isolated. Maybe we could make this like a little forum and have a discussion to just help people in general and talk about the subject. I feel like it's a subject that doesn't get talked about a lot but it is one that is felt every single day but thousands of people. 

Well..... start commenting below and let's discuss our thoughts and tips :)

That's all for now. I shall speak to you all soon.

Stay Strong

<3

The Truth About Pain... Going, Going, GONE!

Hello there my lovely readers, 

So erm.... I'm tubeless. I am not quite sure how I feel about it either to be honest. It was all very fast and emotional. It was causing my throat to go all red and inflamed which was making it very hard to swallow stuff. I was also struggling when things were going through it, so I was unable to feed and only using it for medication. My specialist didn't think that I should keep it in just for medicine particularly as it was affecting other things. When it was taken out, it was... well.... was exactly in the best shape or looking great. It was clear that it needed replacing because it was an oldie and that could be why it was causing problems. 

Before & After..... 

Not having a tube there after a year certainly feels extremely weird. Every time I go to put up my hair or wash my face or even scratch my nose I expect to feel it and it feels weird when nothing is there. Even small things like when I do blusher, I have to remember that I can do it on both cheeks now (well that's going to cost me more cause I'll get through it faster... darn it :P ). It is nice not having to worry about getting the tape done every night mind you but if I'm totally honest, I miss it. Never thought I'd say it. My tube was my safety net. I knew that if I put medicine through it for sickness or even paracetamol that it would work... and fast. If I was having a bad day and couldn't manage much liquid, I knew it was there to be able to put that extra fluid through so I didn't get dehydrated. Although I was unable to feed from it towards the end (as it should have been changed), it was my safety for the past year! Now I am totally reliant on taking everything by mouth and enough of it. So much easier said that done. I try eat dinner each nice but once I've eaten, I can't move anywhere or do anything so that sucks. My dad usually has to help me crawl up the stairs to my bed after because of the pain I am in that we are still unable to control. It sucks!! My anxiety has definitely been high since taking the tube out but what can ya do eh? I  kinda want the tube back =[ 

Is it weird that when someone looks at me now, my mind instantly says 'what are they looking at? Have I got something on me?' yet when I had the tube, I didn't even think anything when they looked at me? Maybe I just assumed they were looking at the tube and became so used to it that I didn't even think about it, I don't know. But I feel more conscious when someone is looking at me now than when the tube was there!! Weird!! 

My mood has been absolutely EVERYWHERE recently. It's so unpredictable and changes faster than the weather does here in England. It's not cool and not fair on everyone around me. I feel bad but I also can't help it nor do I realise when I'm in a very bad and low mood. It's only when I feel a bit better that I realise and then feel horrible and mean :(. It all goes back to my post about the fact that a chronic illness isn't just physical, it's emotional pain too which sometimes hurts and affects you more.     I am so very lucky to have people around me who are sticking by me no matter how I treat them when my mood dips big time. I'm lucky they realise that it really isn't intentional and I can't help it right now. No-one is perfect and no-one can be happy and put a brave face on all the time. We all have days where we feel like sh*t and feel like giving up and maybe aren't as nice to people as we should be. But, that's allowed? Isn't it?...

 My pain specialist reckons I'm depressed and says he isn't surprised due to all my health problems and quality of life right now because of it. Depressed.... a word no-one wants to hear or talk about. Am I depressed? Maybe. Or is it just I have days where I struggle to cope with everything and feel extremely down and want to give up? How do you know which it is? Is it just a question of opinion? How do you truly diagnose it? Everyone is allowed to feel sad! Besides, when you are in that much pain or feeling that nauseous you are going to be in a crappy mood. You can't help but feel pain when it is that bad... but that is allowed is it not?!

I've come to realise lately that some people are extremely selfish and two faced. Oh, and childish too. It's something that we all know, but lately, I have really seen who I can trust or rely on and who I can't. Even when it comes to just being friendly. Some people can be extremely two faced particularly when it comes to my health. It comes down to partly not understanding but also just thinking about themselves. Just because you have a chronic illness doesn't mean you should sit at home and do nothing or do part time work or not do things you enjoy. Sure, sometimes you might have to adapt things or sit down and take a 5 minute break every so often. Is that really such a big deal? Plenty of people go take random 10/15 minute breaks every other hour to have a smoke and basically kill themselves and that's ok but to sit down for 5 minutes to catch your breathe if you're in pain or feeling sick isn't ok?  I am not going to start saying names (pretty sure you'd know if it was you) or anything but I just don't understand how people can be so nasty for no reason at all. So if you are sitting here reading this thinking it applies to you,  all I can say is if the shoe fits then maybe you need to step back and take a look at yourself long and hard in the mirror. I just needed to share this and make people think about it. Being nice and supportive to someones face and then going behind their back and being a complete bitch is really nasty and to be honest so childish. Just because someone has an illness doesn't mean they should give up everything if they are capable of doing it. ARGH... it just makes me so angry how some people just think of themselves and be so nasty towards others. It's a really horrible quality and won't get you anywhere in life. And breathe......

This is from a little while back now :)

On a more positive note, cheer is going great. I'm making some really great friends who are genuine and love the same as I do. I'm soooo super excited to get my uniform and have my first cheer competition. It makes me feel so good and is such a great way to release all my stress and anger whilst exercising my body. All I think about is cheer and can't wait for it to be a Tuesday evening. Sure, sometimes (most the time) I struggle a little towards the end of the session, but who doesn't? It is an intense work out which requires a lot of stomach muscles & energy 

HAHA.

I think that just about covers all of my updates since my last post. Nothing much is being done right now. My specialist has one idea up his sleeve but it is an extremely new thing and he has to check whether it can be done with my pacemaker. If it can we would have to turn it off though. :/ So, we shall see if that's going ahead and then I shall share all :)

Hope you are all well. Who's excited that it is Autumn/Fall? What is your favourite thing about Autumn? 

Well, Until we speak again...

Thanks to Louis Smith for helping to raise awareness!!

Keep Raising Awareness & .....

Stay Strong

<3 

Emotional Pain Can Be Worse Than Physical Pain

Hey Guys,

I was inspired to write this post from both personal experience and hearing of others who have or are experiencing the same thing. It is something that makes me so incredibly upset yet angry whilst furious yet frustrated. I know it doesn't apply to everyone, but unfortuantely, unless you experience something, you don't know much about the subject and therefore don't know how to be when around someone who is experiencing it. This post could be a long one, so grab a cuppa (or set up your tube if you are a fellow tubie) and get comfy.

In this day and age, we all look up to those in the media. Some of the time this gives a positive message, but other times, not so much. With all the photoshop editing, people believe that if they faceplant their face into makeup or starve themselves to lose weight and be a size 0, they will become the next big thing or look amazing and give them all the confidence in the world. Granted, makeup can help with confidence if you get a spot and yes, being a good weight can help your confidence. That being said, certain illnesses become highlighted. Illnesses such as anorexia and bullemia. Anyone who has any sort of eating problem is instantly told they are anorexic or bullemic whether they are or not.

Before I was diagnosed (and still occasionally), I got told I was faking it for attention, or that I was anorexic/bullemic, or that I was using it as an excuse to not do/eat something or see someone. It's something that many of my fellow Gastroparesis friends have also experienced, along with thousands of others who have any form of eating problem. Unfortunately, people are so uneducated about health conditions unless they are common illness or seen in the media alot. That then leads to people saying things that hurt to those of us who are suffering with health conditions. Whether it is said intentionally or untentionally .... it hurts!! We are still human!! I'm not some robot who hasn't got any feelings just because I have a chornic illness!!  Sometimes emotional pain is worse than physical pain... particularly when it's because of someone you thought was there for you.

Whether a person has been diagnosed or not, there are certain things that should just not be said. I know not everyone does, but unfortunately, a lot of people do say some of the things I have I have listed below to  someone who has any form of eating problem (diagnosed or not). It is not ok and can be really hurtful for both them and their family if they hear it or have it said to them.

Telling someone;

• They are choosing to not eat
• They are faking it
• They are an attention seeker
• They are making it out worse than it actually is
• They are anorexic (even if they are, don't play on it)
• They are saying it to get out of eating something they don't like
• They are saying it to get out of doing something they dont want to do
• They are saying/using it so they don't have to see you
• They are fat/too skinny
• They are making your life difficult/harder
• And many other thngs

These are all things I have and still do experience and I hear about others who have the same.

I recently was told by a friend who is younger than me and is still at school about some of the things they are experiencing. They haven't been diagnosed yet but they get told by friends many of the things listed above. It's hard enough that when it comes to lunch time at school, they have to sit at a table around others who are eating and either try and attempt to eat something or just sit and watch. They even sometimes get forced to try and eat which, to be perfectly honest, just makes things worse. School is hard enough without being bullied in any way and saying things like the above to someone who is unwell is a form of bullying. You are messing with the way that person is thinking and feeling. The majority of the time, saying something nasty or unthoughtful to someone hurts more than if you were to punch them. Just like punching someone is not acceptable, saying hurtful things to people aren't - whether it's health related or not for that matter!

You don't know how someone reacts when they
are behind closed doors at the end of the day.

When I hear stories of things people have said to my family and that they've become upset over it, it makes me so unbelievably mad. Saying it to my face or even behind my back, but to my family? That's not ok. My family suffers just as much as I do. Maybe not in the same physical pain way as I do, but mentally and physically in living their lives they do. There is just no excuse for it.

Whether someone is faking it or not or even using their health as an excuse to not go somewhere or see someone, NEVER say it to them. Can you imagine how you would feel if you were in that position. You want nothing more than to be able to sit down and eat something nice, (without any consequences) but can't and then, you have people who are supposedly your friends (or family) and are meant to support and love you, but then say things that really hurt you whether it's meant or not. The person is most likely struggling both physically and mentally as it is and by being told stuff by the people they thought they can rely on, makes it so much harder. If you think someone is faking their illness (which, I don't understand why anyone would fake being ill over a period of time) or well... anything that could hurt them... keep it to yourself. Playing with people emotions can lead to even more health problems such as depression. Is that something you want? To make someones health worse or even cause mental health problems on top of everything, because you've knocked their self esteem and turned on your friend, partner, family member etc...

I also wrote a blog post not that long ago about things you didn't know about someone suffering with chronic pain. If you didn't read that but would like to, then click HERE.

It is the exact same thing, if someone is dealing with pain be it due to an eating problem or any other health problem, saying things can be so hurtful and really make the person feel alone and depressed.

Sorry to go on and on, but it is something that I just can't not talk about after hearing so many people I care about get upset because of it and when I experience it too. If you know someone who has any form of illness that you care about, don't push them away by hurting them or if you see or hear someone saying stuff to them that is hurtful, stand up for them.

Lets spread the word (and this post) and educated everyone about more conditions that aren't as well known and about you just gotta be normal around someone who has got an illness.... they're still human.

Love to all

Stay Strong

<3

Rock Bottom | Gastroparesis Update

Hey hey hey....

How are you all doing? Better than me I hope!!

 

Not my x-ray of the tube...
Going to ask for mine next time
though me thinks :P

It has been a really rough time lately and have had my butt well and truely kicked by Gastroparesis. My health has gone on a downwards swiral once again and we don't know exactly what knocked it back. I thought it was the tube as I was pretty certain it had flipped out of place again, but I've had the x-ray and it showed it was still 2cm in my jejunum - or for us non medics, your small bowel where

your food ends up after your stomach has finished digesting it. It did show there was a small amount splashing back up temporarily untill it went back down where it should. So all in all, anything that goes through it is getting to where it needs to. As happy as I am that it is in the right place and doesn't need replacing just yet, I'm upset because it leaves me with no explaination to my current state.

 

I've gone backwards and am in so much more pain and the nausea has just gotten out of control with the wretching at a high again. The nausea has been horrific even if I don't attempt eating and if I do attempt it.... I have my head over the toilet whilst curled up in pain. I made the mistake of trying to eat some cheese on toast towards the end of a work shift as I was starving. About 30 minutes after eating it, I had to head right to the toilets. I didn't throw up or even wretch (just about through extreme heavy breathing) but I felt like I was going to at any moment. Mix that with absolutely horrific pain... it was a disaster. A colleague came and sat with me for a bit and tried keeping me calm by telling funny stories and distracting me as much as she could until my mum got there to pick me up. I have never 

had to be picked up from work before in all the years I've been at work (besides when I burnt my entire left hand and couldn't use it to drive), let alone because of Gastroparesis. I was just that bad that I couldn't get up let alone finish the last hour and a half of my shift. I was so embarrased as my mum walked me out through the hotel lobby to her car. People that worked there looked at me, guests of the hotel looked at me and well.... it felt like the whole hotel stopped what they were doing and were watching me. I know they weren't and anyone who did knew of my condition and did ask how I was feeling when I went back to work the following day but I have been relitively 'lucky' since being unwell that I have never been sick to the point where I have had to go home and never out in public (besides once in synangogue - woops). So it was a pretty horrible ordeal.

 

My energy levels have been non exsitant as well as the nausea and pain and I pretty much forgot what sleep was unless it is called blinking whilst lying bed. I never really sleep that well but I wasn't sleeping at all. Have you ever been so ridiculously tired that someone can say hi or see you later and you tear up and want to cry? .... I have. It sucks!! Particularly when you are trying to comlete a 8 or 9 hour shift at work!! Mentally I just wanted to give up and never wake up. I was mentally and physically exhausted and just couldnt cope anymore. Gastroparesis was absolutely kicking my butt!

 

After having the tube x-rayed and knowing it is in the right place, my mum & dad suggested I tried to start back up with the tube feeds as I hadn't been doing it recently. The only problem with tube feeding aside from having to plan your entire day around the timing and length of the feed, is that it leaves me feeling hungary the following morning yet there is little to nothing I can do about that.

Oh hello old friend...
who else can sleep and eat?
I CAN! :) if you don't laugh.. you'll cry!!

Nevertheless, I did a feed and did start to feel a little bit better. Not a huge amount, but at this point, anything tiny bit was enough. It helped the nausea and the lack of sleeping. After two nights of feed, I now feel a little more energized (and by that I mean, I don't need to hang off the reception desk at work and can stand up and keep my eyes open) and the nausea is sooo much better! The pain unfortunately isn't any better but we can't have it all eh. It just shows me that I really can't without having that tube there, even if it is for meds only or tube feed when I get bad. 



I can't say I feel amazing now or want to carry on my fight with Gastroparesis particaurly, but slowly, with more feed and energy, I'll get back on track... least that's what the parents say.  :P They're convinced they're right... but then again, they think they are right even when they are wrong. Love you both if you're reading this HAHA!!

 

There's nothing else to update really if I am honest. My pain specialist is away for the rest of the month, so I have no more appointments until the beginning of October now. Unless we can get hold of my specialist.... apparently he's a very hard man to contact... well his secretary is anyway.

 

Sorry for being a bit of a downy at the moment, but.... this is what it is like living with a chronic illness. There'd be no point in writing this blog if I was just going to sugar coat everything in every post. The truth isn't always pretty but that's life! Help spread awareness..... we need so much more research done on Gastroparesis to help try make things atleast a little easier or more stable if nothing else. 

 Well until the next time...

 

Stay

Strong

<3 

 



Life Is Like A SeeSaw

Hello Hello Hello,

Once again, it has been a fair amount of time since I last wrote a post. Sorry!

Gastroparesis has this habit of knocking you right back down every time you climb up. I knew I was due a bad patch as I had a pretty good stretch of being relatively ok. 

I literally feel like I am on a seesaw of emotions and physical pain. I am either up in the air having a blast and showing Gastroparesis who's boss OR I am right down there on the ground hitting rock bottom and depressed. 

I have had a fair few doctors appointments since last posting, however, not much has been done. I ended up being on a second lot of anti-biotics this month with a temperature yet again. It seems the pain specialist is starting to run out of ideas. He has given me a bunch of things we could try now, but, most of them aren't really options in my eyes. His ideas include trying new medication again and most probably ending up with side affects and withdrawals again, which being perfectly honest, I am so done with that all and not going through again. I just can't.

His ideas including things like:

•  Medication either by mouth, tube, up my lady parts or up the other side down there. There is no way either of those would ever happen. It is horrible and no practical either.
• Another injection that is done slightly diffusely but still in the nerve through my back.
• Find an anti epileptic medicine that can be injected. However it could cause problems with my skin going in that way. 

After my last appointment with him, I swirled down into a very bad place mentally. I lost all hope and completely gave up on life. I disappeared for a day and didn't tell anyone where I was and didn't answer my phone. I'm saying this to be honest. This is what living with a chronic illness can do to you. There is no point sugar coating it and saying that I am always strong and always cope and get on with it because the truth is, no-one can. You have ups and downs. Unfortunately just a few more downs that ups. 

I still have basically given up. I've lost all care for things I love (besides cheerleading) and for friends. As bad as it sounds, I really have just given up being social and having conversation. I gave up on medication and just everything in honesty. That is the reason why I haven't blogged or done youtube. I just haven't found the motivation to do them, or energy for that matter.

The pain specialist has just given me some super strength pain killers in the hope it'll give me a little break to get my mind but in an ok place. I've been given Fentanyl. Makes my head feel funny but deco helps take the edge off.  As Tesco say... 'every little helps' haha :) 

In all the years I have been suffering with the symptoms of Gastroparesis, I have always managed to not be sick or wretch in front of anyone aside from that time at Synagogue (though I did manage to get outside in the car park). I have a huge fear of throwing up and always have. It panics me almost always ends up giving me a panic attack of some sort. A few days ago, I had my boyfriend here and my mum made everyone dinner. I was already in pain and to be honest, I knew I shouldn't even attempt to eat. BUT, I did and hugely regret it. I didn't want to feel left out or make any-one including my self feel awkward. A few hours after eating, my stomach decided it was pay back time. We were just chilling and chatting on my bed and then I felt it. I tried soooo hard to try keep calm and hope it would pass. And then it came. I suddenly sat up and told him in a panic to get my dad. I ran to the toilet and instantly started wretching. Nothing came out but it felt like it was going to and didn't sound pleasant. My dad came up to calm me down. I didn't have a full on panic attack but it did get to the point where I had pins & needles, couldn't move my left hand because it went so stiff, my head killed and I felt like I couldn't breathe. It was so horrible and I curled up on my bed after and didn't talk to anyone and just hid my head in my pillow. I was horrified and felt so ill. I fell asleep as my body just became even more exhausted from it but felt super rough the following day and only had about an hours sleep the entire night. 

On a real plus side, I MADE THE CHEERLEADING TEAM!! That's pretty much the only thing keeping me going right now. When I have cheer practices, I feel good like I'm achieving stuff and can let out all my steam. It feels good to be a cheerleader officially now and to be part of a team again. I know also feel a little pressure that my health will make things hard to be part of a team and not let anyone down. I love cheerleading and everything that comes with it so Gastroparesis & my body are just going to have to suck it up and get over itself. I can't wait to put that uniform on and be proud and then compete and just everything ahhhh.... My purse on the other hand, not so much a fan. Cheer is EXPENSIVE. 

I think that is going to be all for now. Don't want to bore you for too long with a long update. 

I'm going to try get back into posting more often... I promise. 

My dad has an idea of something from America (where else), so when we find out more about that, I shall keep y'all posted. 

But for now, 

Stay Strong

<3

Panic Attacks Creeping In

Hey Hey Hey,

Once again, it's been a little while since I last posted. I am going to do a full update of all the injections and such. However, for this post I wanted to talk about something that I get a lot and have been feeling it A LOT at the moment. That is.. Anxiety! 

Anxiety is a horrible emotion to feel and deal with. It is one that you can't control & are totally unaware of it creeping up on you. We all have different levels of anxiety within is. It can be from something so simple such as 'oh poop I have work tomorrow' to something more nerve wracking such as a doctors appointment (which I still have even after having so many). As per usual, stress is a big culprit of raising our anxiety levels making us more sensitive to it. If you are someone who is very calm and fearless, you'll have much lower levels of anxiety and for this, I am super jealous of you.

Sometimes, when your anxiety gets really high you, it can end with you having a panic attack. I, unfortunately, have had to deal with a few of this over the last few years. I can be super calm in certain situations that others get stressed like a fire alarm going off or someone fainting. Put me in a hospital or in a situation I am not comfortable with, and we have a whole other thing going on. I'm not always aware of what it is that sets me off. I don't even always remember what's happened after an attack. I remember, well.. was told about the first major one I had the first time I was admitted into hospital for Gastroparesis to get a feeding tube. It was horrible, I felt like I couldn't breathe and had people all leaning in over me and getting all up in my grill. I do remember yelling that my feet, legs and hands all had such bad pins and needles that I physically couldn't even move them. My hands were clenched together and I just could not open them. In the end, they actually had to give me something to calm me down as I was hyperventilating and just could not calm down. I feel like I remember someone telling me to calm down and stop it... it made me so angry and worse because it wasn't and isn't something that you can just stop there and then. If you could... boy would it make life easier. 

When your anxiety is high it can also mess with your mood and mind in general. I know that when my anxiety is high, I am always more sensitive and feel down in the dumps as they say. I then end up having stupid arguments over nothing with people because of my mood due to the anxiety. It drains you in so many ways and you're not fine just because the panic attack is over. You have an after shock almost.

There are some situations I know to avoid because they just get my anxiety going just thinking about being in that situation. Things like night clubs. I have been a few times and each time (unless I am totally out of it drunk - which I don't recommend), I have felt so uncomfortable and claustrophobic. I find it very difficult being around people who are drunk if I'm not. I feel like something bad is going to happen even though there most likely won't be. Even though I am in and out of hospitals loads, whenever it comes to staying in one where I am going to be alone without my mum or dad, or lying in the hospital waiting around for them to decide what to do next, I get overcome with panic and being scared. I don't even know what for and I can't explain exactly how I feel but I just ... it's horrible. 

So many feelings come at once that you can't control!

The reason I decided to write this post is because, my parents are going away in a few days and I rely on my mum everyday to do the tape on my NJ feeding tube. I am not allowed to do it myself as I could end up pulling the tube out. As much as no-one wants a feeding tube, when you have one, you end up becoming very attached to it. You have to remember that the tube is basically what helps keep us alive. Changing the tape sounds like it is so easy but in reality, the tape is super sticky and can stick to the tube quite a lot. The tube isn't sown into my body and can easy get dislodged. 

I have one friend who I know can change my tape as she does it often and did it when we went away together. However, I'm used to having someone at home with me 24/7 pretty much in case it suddenly becomes loose, particularly after showers. For some reason, the thought of someone else touching my tube and doing it panics me. We've tried showing my dad before but then when it comes to him actually doing it I just freak out. I know my dad is not going to hurt me or yank the tube. I trust my dad with my life so it makes no sense to me as to why I just can't seem to let him do it. We showed my grandma who lives round the corner to me how to do it. She tried doing it for the first time yesterday. Now, I know things take practice, but when it comes to the tube, it needs to be spot on. If it's taped in the wrong position, it can hurt my throat or potentially move around too much. I managed to let her do it, but I was totally freaking out inside. I was getting all teary and my heart was racing. Just thinking about her doing it freaks me out. I tried counting and keeping my breathing normal and managed to not end up having a full panic attack. I just, it's getting my so anxious knowing my mum won't be here to do it. It's also then making me on edge with everything else through the day. My grandma is really trying and has made notes and 'done her homework' but it just isn't my mum and it still gets me so nervous and just ahhhhh. We've also showed one of my friends who is in the same department as me at work how to do it today. She seemed to really get the hang of it which has calmed my insides down just a tad thankfully.

Sometimes, I feel like I am totally alone in suffering with this, but, in reality, I know there are so many other people who also do. Even people I look up to which always helps me remember that no matter who you are, you can suffer with them and it's totally normal. 

Panic attacks are NOT something you chose or want.

 I always try and warn people I am with a lot and trust about them so they are kind of prepared I guess should one happen. People always ask what they can do to help and the answer is, honestly, not a lot. Just keep me calm and remind me that it is going to be alright whatever it is. Telling someone to stop it or getting panicky around someone having an attack does nothing but make things worse. 

Something I don't think people realise, is that self esteem gets seriously knocked by having panic attacks. It always feels like people are judging you because you suffer with them. People somethings think you are using it as an excuse to get out of things or that you are making it up for attention. I always feel guilty after it because I feel like I'm ruining peoples day or something.

I wanted to see how many other people reading this suffer from panic/anxiety attacks be it not that bad or severe ones. 

How do you calm yourself down and what do you find helps if you are about to or are having a panic attack?

I read blogs and watch videos about anxiety to find things that help. Everyone reacts differently so what works for one person may not help for the other person. But, the one thing that you always have to remember it to try keep your breathing slow so that you don't hyperventilate because then things can get messy. :(

Comment below or head over to my Twitter/Facebook and lets start a conversation and see if we can help one another :) You are not alone in this and there are people who understand how it feels. Try to avoid the situations you know will set your anxiety off if you can and if not... remember it isn't going to kill you no matter how horrible it can be and feel. 

I love you all. Support one another and anything is possible to achieve. 

Even the word "impossible" says "I'm possible"!!!

Stay Strong

<3

Can I Travel With A Feeding Tube?

Howdy Everyone :)

Thanks for coming back to my blog!

This year I have been a very lucky girl and been away twice (but my bank is saying NO to anymore for now). Normally, when you book a holiday, you get a super excited feeling inside. The first holiday I booked, I was suddenly over come by huge amounts of anxiety!

Was I actually able/allowed to go away with a feeding tube? How would I get all my feed and medication and everything else that goes with it over there and across the boarder? Can the tube go in the pool? All these questions and more went through my head. I spent ages searching the internet to try and find answers. 

Now that I know ther answers and have travelled twice, I thought it would be a good idea to answer all these questions in one place for anyone else in that situation, or, maybe extra tips you never thought of or if you're just interested in it. :) I also made a video but I'm not too sure how much it helps as I just talk HAHA, so I decided to write it too!

The answer is, YES you can travel with a tube. It just requires a little more preparation than it would normally. But.... does that really matter if you get a great holiday out of it? ... I think not :) 

This is a little check list of things you gotta get/do if you want to be on your way to sun, sea and s..... sand of course. 

• Doctors letter confirming the medications you are taking, sterile water, the feed & pump you are taking, where you are going and the dates you are going. Get the to write on there that it is essential you have it with you in hand luggage as well.. that way they can't argue - well they could try but they'd have no chance :) 

• An adapter for your pump charger. If your pump got no juice.... you got no food pretty much! 

• Get yaself some form of case of bag to take on the plane for medication, giving sets, syringes, feed bottles and all that jazz. Always remember that when you work out how much medication and all the other bits and bobs you need, always take a little extra to allow for spillage's or breakage etc - this bag comes in real handy on the way home when you've used most the stuff and just end up with extra clothing space. Girllllll.... you got some major shopping to do (or guy)

• Depending on what type of tube you have but anything you use for it.... for me personally, I need good strong, waterproof tape for it which was awesome and my everyday tape anyway (Opsite Flexifix transparent tape) 

• Make sure your travel insurance covers Gastroparesis/ any condition you have. As tubies and people who don't have the best health, we are more likely to need medical help out there. Hopefully you never need to use it, but, it's better to be safe than sorry.... so I'm told! 

• Informed your airline and feed company. If you don't tell the airline... you aint getting the extra bag simple as pie. And, if you don't tell your feed company people.... you are either going to have to take all the bottles and supplies yourself or..... you aint getting NOTHING! :)

• A travel kettle if your destination doesn't have a kettle for your sterile water.

• Last but not least, don't forget to take yourself..... that is usually quite helpful when going on holiday!! 

Travelling with a tube isn't all that hard once you've figured it out. 

I have also made a video to go along with this post going into a lil' more detail about travelling with a tube. So, I really hope that between the two of these things, it helps you feel a bit more at ease about your holidays. Check out the video by clicking right HERE :)

Any questions? Just ask... I don't bite.... OR do I?

Enjoy your Summer holidays from wherever you are or are travelling to in the world! 

Stay Strong 

& Travel Safe

<3