Vagus Nerve Stimulator Trial (& Review)

Hey All,

Hope you are well.

Recently, I got to try a new type of nerve stimulation called the 'Vagus Nerve Stimulator', by a company called GammaCore which is actually from New Jersey, America (where else would it be eh?). If you have been reading my blogs for a while or seen my videos, you'll know I have a Gastric Pacemaker already. It helps with nausea to a degree but not for pain at all which we understood would be the case. From having it off, we know I most certainly benefit from having it on. My specialist decided I should try a new type of non invasive treatment. It has no side affects, is painless and doesn't involve popping more pills.

Vagus nerve stimulation sends electrical signals along a nerve, called the vagus nerve, parts of which run through the neck to the brain. For many years, vagus nerve stimulation has been used to treat various disorders, such as epilepsy and depression, in thousands of patients and is now branching out and being used for other conditions.

It is a relitively small device that you place on your neck over a conductive gel. You position so that it is on your Vagus nerve, which I got shown how to find by a very nice gentleman from the company over a Skype session along with how to use the

device itself. Did you know that the Vagus Nerve is only 3mm wide? It can be a little tricky finding the exact positioning which I think may hinder the way it works a little as you don't end up getting the full dosage. You know when you have hit the right spot as your lip drops to the side a little and looks a bit like if you have a stroke but doesn't hurt. It just feels like a tingle. The device itself has a self timer and each 'dosage' is 90 seconds, which you have to do on each side of your neck. You are also able to control the stimulation level with the two blue buttons on the device. I would usually get to about level 30 and that would be strong enough for me. So, the maximum I got to was 6 minutes on each side at around level 30 or so.

This is the device and
conductive gel you are provided

You pop a little of the gel on each of the sides before placing
it on your neck

The advantages to this treatment are:

• Non-Invasive Neurostimulation Technology
• Non-Pharmaceutical
• Minimal Side Effects
• Control over your treatment

• Direct to the nerve itself

The disadvantages to this treatment are:

• Hard to find the nerve in the 90 seconds as well as receiving the treatment
• Needs to be repeated throughout the day

• Expensive as the device only lasts a month at a time

I was fortunate enough that my specialist managed to get me a free months trial of this device. The company are trying to branch out in what the device can help with, so it meant that it was a win win for both of us.

During the first 4/5 days it seemed to show some positive results and looked to be hopeful. The pain wasn't as bad or didn't start straight away so I had time to move somewhere more comfortable than the kitchen chair. I have spent hours sitting on the same kitchen chair after eating because the pain is that bad. It give you a very numb bum that's for sure.

The lip drops when you hit the spot...SEXY!

Unfortunately, I found that even when we were increasing the amount of times I was repeating it during the day, the symptoms just seemed to come backwards to where they were. I was struggling to eat because of pain and even fluids were becoming an issue. See, in theory, the idea of stimulating the nerve directly is a fantastic idea that should have great outcomes. I do think the fact that you don't know if you hit the right spot before starting the timed treatment hinders it. Particularly at the start of it all. If you turn it on and then have to move it around slightly or at a slightly different angle until you are in the exact spot, you don't receive the full treatment and therefore how are you able to get the full benefit?

Also, another thing I don't understand with using the device for Gastroparesis, is that you're only getting the treatment 2-3 times a day (give or take), What about the rest of the day when there is no stimulation happening? How is the stomach going to digest the food without any aid? It isn't like the pacemaker device that is working 24 hours a day.Don't get me wrong, I was more than happy and hopeful in trying it, but I also had my doubts. It was like I had woken up in heaven the first few days when my symptoms were less and more under control. I just don't understand what is there to help in between each time of doing it.

Overall, I really do think this treatment has the potential as it is direct to the source of the problem. However, unfortunately, for me, it didn't work aside from the initial 'hit' from the direct stimulation. I think there are things and way they need and could improve how it works so that you can get the full benefit and throughout the day. It has only been trialed in a handful of Gastroparesis patients and from what I understand, they've all had various responses to it. I do know that my body has a tendancy to react well to things initally and then stop working after a week or two. That could be the reasoning behind the device not working well enough for me, who knows!

I really hope that they make some adjustments and I can try it again in the future. Maybe with better results.

I am very grateful I got to try the device and a huge thank you to GammaCare (not that they are reading this) for letting me trial it. A big thank you to my specialist Professor Epstein (again not that he is reading this) for setting it all up for me.

Well, that is all for this post today.

Question:

Have you tried this device if you are a fellow Gastroparesis sufferer? Or what do you think about the device if you are a non-sufferer.

Any more questions that I didn't cover within this post? Let me know in the comments!!

Stay Strong

<3

Reality Hits Home

Hey Hey Hey

How you doin'?

As per usual, I haven't posted in a while. I'm sorry I suck at this. I feel like the last few weeks have been such a blur full of crazy things. 
I debated posting this for quite a while as I wrote this when my emotions were exceedingly high and the writing got very real and I wasn't sure if it was too much.

I had two weeks off of work and it was nice to have a break from somewhere that you are 24/7. Sometimes it's just a must. I have however got a Kidney Infection (waiting for bloods to confirm it but have every single symptom of it and am being treated for one. JOYS. Loving life :/

My trial of the thingumabob finished a couple of weeks ago now and am working on writing a full post about it. But, cut a long story short, the pacemaker has been turned back on!! I've got a couple of week trial period with it on full blast and if no better.... going back to an NJ Tube temporarily may be the answer until a plan is put in place. Unfortunately, there doesn't seem to be much of a plan unless I am willing to keep trailing drug after drug. I keep getting told that 'it only takes one to work'' but how many am I supposed to try and suffer from in the mean time. I know people around me are only trying to help and that the medics have got to the point where they can only give me different types of medicine. I just don't have it in me to continually have bad reactions to medications one after the other and end up worse. With all the things they can do in medicine these days, they have no idea how or what to do now so I can do a simple task that millions of people do every single day. EAT.
I take a cocktail of medications every morning and evening just to try and live a some what 'normal' day. Do I? HA HA HA ... far from it.

I feel like I am going to just explode at every moment. The smallest things just make me go crazy. The last two pain specialist appointments have not gone well. One ended with a full on panic attack that they were almost going to have to give medicine to calm me down and the last ended with me locking myself in the toilet. Although I have known what my health condition involves and have hit many lows realising what life is going to be like, the reality of it has really hit me recently with all the failures of medicines and treatments not working. The fact that other than drug after drug, my doctors don't seem to have any clue to what to do. Don't get me wrong, I absolutely love my pain specialist (although he probably hates me after my last appointment) and I know he is trying his absolute best and trying his best to support me, I have just got to the point where I am so ridiculously fed up. I am literally ruining everyones life and making everything hard for everyone around me.

All I want to do is hide away, curl up and cry. Not loving life right now to be honest. Not at all!




Of course, there is a bow on there.
Wouldn't be Sophie's otherwise :)

With Christmas around the corner, my feelings are just all over the place. It's another day that is about spending time with your family and... having a big Christmas dinner. Yet another day that food is majorly involved, meaning even more of the TV adverts are food related. It is crazy that with everything that could be advertised in the world, food adverts are 99% of the ones shown over and over and over! It's doing my flipping head in. I don't watch much TV as it is because of that, but it is even worse at the moment. I'm stressed about Christmas Day because I don't want to be at my family's house with everyone watching them eat, but I also don't want to be left on my own knowing everyone is together and I am once again alone and missing out on being with all the family. It's the same catch 22 as every single occasion that happens through the year. On the flip side, I have decorated my room which now looks like santa's grotto. I originally wanted to put some fairy lights around my window because every time I see them, the seem to relax me a bit. It somehow then turned into wanting a little Christmas tree for my room that I can put more lights and glittery things on and presents once I start wrapping them up, which then also included getting even more lights for across my bed. I love it though, so I don't care! :)

I don't think I have much else to say to be honest. My mind feels like a mushy mess right now.
I also don't want to bore you any further.

So until the next time,

Stay Strong
<3

Self Esteem - Only So Many Times

Hey Hey Hey

How ya doing?

So, my previous post took me a while to write. It was done over a few week as my head was all over the shop. This post is a little more structured I guess you could say? Or then again, this is me writing it, so it probably isn't.

The real world is a scary scary thing. There are some good times but also some very bad times. The things we go through in life, makes us who we are. The struggles we go through strengthen us, and the good times we have put a smile on our face. Everyone has self doubt at some time in their life but sometimes, it can really affect you quite badly at times. The things that knock us down are supposed to make us stronger but sometimes you can only take the knock backs so many times.

Self-esteem is a term that is used to reflect someone's overall emotional evaluation of their own worth. It is a judgment of theirself as well as their attitude towards theirself.

Low self asteem, self blame and anxiety go hand in hand but unfortunately manifester until you end up in a complete state of not believing in yourself and thinking you're not good enough at anything.
There are a number of things that knock your confidence and make you doubt yourself. However, when things are constantly happening, it can give really knock you, causing yourself to have no faith in yourself and your abilities. It could be anything from constantly getting told you're not getting good enough grades at school, to bullying, told you're too fat or too skinny. or being over looked at work for higher positions or jobs in general.
Health issues are also a huge contriubtion to low self belief. There are only so many times you can keep brushing something off your shoulder before you begin to believe that it might actually be yourself and your abilities that are the problem.

I know myself that my health knocks my confidence big time and anytime something goes wrong or against me, I put it down to the fact that I am not good enough or my health stopped it from happening. Work is a big one for me. I have always done my best to keep working through my health because it keeps me and my mind busy. There have been many times though that promotions come around, or an opportunity of some sorts that I don't get or even sometimes don't get given the chance to get. Everyone will have some sort of experience of being over looked at work or school or in life in general.... but how many times will you keep yourself in a position or place where you are knowinly
putting yourself in a position that it can and most likely will keep happening (no matter what you are promised). Or even something simple like trying to complete a shift but not necessarily being support by your whole team or even just struggling to complete it. There have been many of days where my health hasn't been great and I struggle to complete my regular shift. Sometimes I'll take a seat for a while and sometimes I will try push on. Either way, it knocks my confidence in my ability to still be able to work normal hours or even work at all.


Unfortunately, low self esteem happens within us all. We all deal with it differently and some of us will show it as being more vulnerable and others will act over confident to cover up being extremely unconfident in themselves. As with anything, we all have our own methods of dealing with things. Having that lack of confidence can have a huge impact on everything in life whether we realise it or not. It will determine how we see ourselves and our capabilities in different situations. All those times we should 'Just Say Yes' become no's and all those no's lead to further knocks in confidence and isolation. Although, sometimes, these situations that happen can lead to better things that you may not have gotten without. For example, you could stay in a place that really doesn't make you happy and keeps knocking your self belief and hope, but, it ends up giving you contacts and experience in life to make something happen that makes you happy and gives you confidence.
The people you surround yourself with can also really change your self esteem. If you are surrounded by people who don't believe in you and give you opportunities or just support you, then that will rub off on you and make you doubt yourself until it becomes unhealthy. BUT, if you are surrounded by people who love and support you and believe in you and your capabilities, then you will believe in yourself. People who don't make you happy, or support you or help you grow in yourself and life, just are not worth it. They're not worth getting upset over. They're not the people you need or want in your life. Don't let them put you down mentally! Take a stand and show them who's better than that and more than capable with anything they put their mind to. Have the last laugh. Keep your head held high because you are more than capable of doing it and are so totally worth it. - HAHA 'because you're worth it', makes me instantly thing of the L'Oreal shampoo advert!!

Felt this was only fitting with the recent S Club 7
Reunion!!! <3 them

As usual, I'm saying all this stuff about keeping your head held high and not getting upset over people or things, but I do. Very much so. And over the next few weeks, I'll be pushed to the limit in trying to take my words into my head as good (or I hope as good) as I give them. As with all words and quotes in life, they are so much easier to say than they are to action and do. It takes practice... and lots of VERY strong mind power skills which can be very hard when your mind is not in a good or sensibly thinking place.

I don't actually know if any of this post makes sense or if it is just one big ramble of saying the same things with no actual point. But, it is stuff that needed to be taken off my chest and a subject that effects us all at one time of another and is one that is hugely affecting me at the moment. It's really not very fun when it does effect us strongly, but that is life and there is nothing we can do.

We have two options in life, to let people rule how our minds think, or to let our minds rule what people think. Is that even a good saying? Hmm... I'm not sure. It just came out my mind. That's the best I got right now!! HAHA

Well, I think that's going to be it for this post. If you think any of this was directed to you, about you or is what you think.... then it most probably was. If that shoes fits and all that jazz. Take a good long look at yourself in the mirror and remember that what you do or say towards someone else can have a really huge effect on someone and their life. Don't bully others, don't put others down or knock them back in situations time and time again. Be kind to one another, love and support people who love and support you and surround yourself with people who are good for you to have in your life. Your confidence says a lot about how your life will go.

Stay Strong
<3

All About That Mind Set!

Long time no speak....

How you doing?

I'm going to be honest, I deleted and renamed the title of this post about 50 times. I haven't posted in a while now and there are a reasons for that. The first and main one being my mood and mind. My mind set is in a place that isn't the nicest of places and when my mind is in that place, writing a post just never really works out to well. Sometimes, I am so positive about life and my condition and progress etc, but others, I am probably one of the most negative people you will ever meet. I put on this act to people in the "outside world" to make it seem like I am coping well and am normal. The truth is, I am human.... I have emotions, and those emotions change like the weather. It only takes something tiny or sometimes even nothing at all to change my mood and mind set and I can go from so positive and happy to so negative and depressed. Some days I am determined to conqeur the world achieving everything I want to and more, yet others, I want to fall in a hole and stay there forever. I know it sounds so dramatic, but honestly, that's how life can be with or without a chronic illness.

 Sure, I have some great people in my life and a couple of good things coming up, but, it just isn't lifting my mood entirely. They might lift it for a little while, but not for very long.

Cheerleading is my biggest realease. For that hour and a half my mind is fully focused on something and I manage to let go of a lot of steam. Unfortunately, my mood will soon drop back down again. I feel like my mood just seems to spiral downwards and my stress levels upwards. For some reason my stress and anxiety levels are so darn high at the moment. I feel anxious about things I've never felt anxious about before and over stressed about everything and anything. It's really horrible to say but it makes me feel like there is no light at the end of the tunnel. I'm sure that is not an easy sentence to read particularly if you are someone who is close to me. Sometimes the truth isn't all that pleasant. Not that I want to sound depressing or anything but it is true.

Your mind set can control so much in your life from the way you see or think of something to the things you do or don't do. It can even affect the way treatments work, so I am told. If you are telling yourself that something is not going to work, it most likely won't work to the best it can. I am guilty as charged when it comes to this, but in fairness, who wouldn't when you have had 3 years of all different forms of treatment not work?! Comes back to that old saying 'Postive mind Positive outcome'. Do I believe it? Hmm.... that I'm not so sure on.

 My mood and mind set are still pretty shitty (excuse my french) to be honest with you. I am using things to calm me down that I have used in the past. Some work temporarily and some... not so much. Music is a big one for me. I can put my headphones in on full blast and just drift off into another place. I love my music and would be lost without it. I'm a HUGE Demi Lovato fan and without her music, I wouldn't be able to get through a lot. She has been through so much and has come out the other side of the tunnel great. Her music tells a story that is honest but has positivity in it. Skyscraper is my all time favourite song and is always on the playlist, particularly when I'm feeling a little low.
I sometimes see this blog as a way to express my feelings and let them out in a way that I don't have to directly speak to someone. I am rubbish at sharing my problems with people as I just get too emotional and end up in tears before I'd even started speaking. And although there are always going to be things I don't want to share with anyone, I see this as a sort of release diary for the things I am ok to share and get off my chest. So, to pretend that I am perfectly fine and never 'down in the dumps' would just be lying to you all and to myself - hence everything written above. 

Another reason I haven't posted in a while is due to trying my new thingymabob. I didn't want to make a post talking about a new treatment that I'm trialing for a month but didn't know much about. I wanted to wait until I knew more about it and had some form of update to actually give. I basically wanted to know what I was talking about rather than rambling on with little to no knowledge. I am going to make a full post on it with a full journey of how it has been and have been keeping a written symptom diary. I'll have pictures and everything. It is a very new treatment so I want to be able to really explain things about it which is why I have held off so far. Does that make sense or am I just rambling? HAHA!

I don't think I have anything else to update you on really as I don't want to get into how my tummy is too much as I want to leave that for when I talk about my thingymabob.

Well, I hope you are doing well.
& until the next time we meet again,


Stay Strong
<3

The Switch Off - Pull Out

Heyyy 

How you doing?

Bye Bye Tube =[

I can't quite rememeber exactly what I said in my last Gastroparesis update post, however, I do believe quite a lot has changed since. The tube has come out for starters which is not cool because that is my baby, that is what has got me through this far. And if that was not bad enough, the pacemaker has also been turned off. I'm no longer officially "Robocop" for now HAHA!! The two things that have kept me going all be it not amazingly, but nevertheless I am still alive with them. Not having the pacemaker on has certainly showed that it was working to some extent. The pain and nausea I have had is back to how it was at the very beginning of this. I've had a few retching sessions after attempting to eat which sucks because this triggering off extra anxiety (as if that wasn't bad enough at the moment). But the pain..... oh my goodness has the pain been bad.

Now, although the pacemaker isn't for the pain as such and is more for the sickness, it clearly helps a very little bit. Since the pacemaker was turned off last Wednesday, the pain has just been getting worse and worse every day. The pain during the day without eating is really bad too since the tube and pacemaker has come out/turned off. I'm not to sure if it is because the medication that was helping the 'normal' day to day pain is now going in my mouth rather than down the tube or if it is because the pacemaker being turned off. Either way, it SUCKS.
I ate some soup along with a small amount of potatoes and mince meat the other night. I have not been in that much pain in a very long time. I am not a happy bunny.... at all. that much pain in a very long time. It was horrendous. If I didn't have my knees bent up to my chest, I felt like I couldn't breathe it was that bad. Normally, with the help of my dad, I can crawl up to bed with him kind of pushing me along. On this occasion, crawling was not an option. My dad ended up getting my swival chair that is on wheels and wheeling me to the stairs, the stairs were then a nightmare. He then carried on wheeling me to the toilet and to my bed. I was in so much pain it was ridiculous. On the plus side, I've been told by fellow Gastroparesis girls, that giving birth is less painful than the pain we get, so, if I ever have kids, it'll be a breeze. I'll just sit there with my legs open singing and chatting whilst having a laugh HAHA!

So, I am trying this new treatment thingymabob which is why the pacemaker has been turned off. We don't know all that much about it and it hash't been tried or used in that many GP patients. So, guinea pig Sophie once again. I will be sure to tell you all about it with pictures and stuff when I know more and have used it a little so I can actually comment on it rather than ramble on about something I have no idea about. That would be pretty pointless and a waste of your time. That's me being thoughtful HAHA. It looks like it could potentially do something for general day to day pain, but it's early days and who knows with my body. I'm going to do a full blog post soon though so don't worry :)  

My mood has.... Well.... It's improved a little I guess. It's up and down to be honest. Not as badly as it was but I'm still all over the shop. I'm starting to be able to put things back into perspective and try think more positively so that's a good start. I've also got close to one person in particular who also has GP and we've been talking loads and it's really been helping. My friends from cheerleading are also really helping me out in so many ways that they probably don't even realize. Cheer helps me loads but making these friendships with people who enjoy the same as I do and them being so supportive and accepting and wanting to help and understand means so much. So if any of you are reading this .... I love ya and see ya Tuesday haha <3 
Well, other than being in a lot of pain, the tube coming out and the pacemaker being turned off, I don't think there is much else to update you with. It's a pretty short update on this occasion.
I did just want to say before I do go though, a huge thank you to you all. I started writing a blog to raise awareness for Gastroparesis as well as to try and help others suffering and to also help myself. It lets me release so much through writing these and really helps me clear my head and release emotions. The response I have been receiving lately and all the really kind words for you have been amazing. It has been just what I needed and something I never expected. I don't care whether I get 1 view on a post or 100 views. It helps me by writing them and if it only helps one other people to not feel alone or to understand how a family member or friend is feeling, then I am one happy bunny. So, Thank you :) <3

Well, that is all for today
Until next time

Stay Strong
<3

Self Blame: The Ultimate Emotional Absue

Hey Hey Hey,

Today I wanted to talk to you about something that I also still struggle with. And that is, Self Blame. People blame themselves a lot for a lot of many different things. Sometime, we are to blame. However, other times, we are not. Certain things are out of our control. 

I do believe my body HATES me!

I'm guilty as charged when it comes to blaming myself for things. I always do it whether it is or isn't actually my fault. I blame myself that I have no money but thats my fault for shopping too much. I also blame myself for my health or things that happen due to my health. For example, if I go out for the day and do something that requires a ton of energy and I come back at the end of the day in a lot of pain in my tummy, I blame myself and say I shouldn't have gone out and done whatever it was. I blame myself when things start effecting my family because they have to change plans because of me or I can't do something for them that I would have been able to do if my health was stable. Or, if I sit and eat some dinner or cheeky snack and end up in pain, I blame myself and say that I shouldn't have eaten whatever it was and now it is my fault I am in pain. But, in reality, it is not my fault. It is not my fault my stomach can't handle certain foods or activities and gives me pain. I have no control over how my stomach reacts after food or anything else for that matter. I know for a fact many of my Gastroparesis buddy's do the exact same thing. I saw someones status a few days ago saying that it was their fault they were in pain for going out to a fair for the day. How on earth is it their fault their tummy and body hurt from a day out that anyone in their 20's (or any age for that matter) would be able to do. It's not their fault and it is not fair.





You're not to blame......

I can't really sit here and give advice on how to stop thinking it is constantly our own fault for things that are just out of our control because I do the same thing. I have no idea how to change my own mindset to not think that. The reason I decided to write a post on this topic is because it is something I see often, particularly in chronically ill people. We blame ourselves for our health condition and the pain or sickness it gives us. If you sit there and eat a pizza and then throw it up and have horrendous pain, is that your own fault? NO! But for some reason, we still blame ourself. I've seen quite a few people (or their family writing it about the person) write Facebook status' or say to me that they feel like certain things are their fault, when, in reality they have done nothing wrong and nothing we aren't entitled to be able to do. 

Blaming ourselves for our health difficulties, feeling guilty about them, and sometimes even hiding them from others, are not surprising to be honest. Given huge amount of media stories and advertisements telling us that good health is within our control: we need only exercise, eat right, and get enough sleep. This simply isn't always the case. We're human bodies, and bodies are subject to illness, injury, and aging despite our best attempts to follow these "prescriptions" for good health. When either we or the world we create around us does not meet this illusory ideal, we often opt to take on fault and responsibility that is not actually ours. Our failure to recognize the balance of responsibility in any given situation leads us into the trap of wrongly taking that responsibility, which can quickly evolve into self-blame. Self blame can be paralyzing and can stop us from many things in life. We some how need to realise that we are not perfect and this idea of perfect health is non exsitant. I mean, what is perfect? What is normal? Just because Fred Bloggs can do this that or the other and so can Bob the builder, does that really mean it's the normal or is perfect? I think not. Everyone was made differently and given didnt journeys in life. He above only gives us obstacles when he knows we are capable to get through it. It is to give us a challenge and something to do so we don't get bored? Or, atleast that's what we can say to help us get through the bad times.

Life would be boring if everything was
already perfect. Right?!

Well, I think that is all for this post. Don't want you all falling asleep on me.

I hope you have a good day :)

Stay Strong
<3

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