Mirror Mirror On The Wall ♫

Hey All My Lovely Readers,

 

I must once again apologise for the lack of posting. I know I say I'm going to post more and I really do mean it, it is just that it takes concentration of which I do not have right now. I just can't seem to focus on anything from a period of time and that is once I have actually found an inch of energy.
Sleep is not exactly my friend right now. I forgot what it is like to have a decent night sleep and in turn it effects me day to day with lack of energy and concentration. Not only that it totally messes with my mood and mind set like I have mentioned before. Sometimes and by sometimes I mean most the time, all I want to do is lie on the bed with the dog all snuggled up either doing nothing or listening to music or good old youtube. Just not in the mood to interect with people..... it takes so much energy. Even this paragraph, I keep stopping and starting which is taking forever HAHA!!

Since last time, the bloods came back clear and my pain levels continue to increase. I honestly think bloods are useless these days. Then again, I didn't really have much gluten in me to give it a fair chance. I'm still keeping a gluten free diet (most the time besides when I'm naughty but then suffer the consequences (donuts). Oh my gosh I have to tell you this, it's so funny. So, I have been craving a sugary jam donut A LOT lately. So much so that when I was cuddling the dog, I could smell donuts.... FRESHLY BAKED DONUTS. I felt like the dog smelt like donuts.. like what??? My mum thought I was insane and kept telling me he actually smells like he needs a shower HAHA... Oh lord. What is my life coming to!! I'm going to need to get to the gym with all these cravings LOL :)

Do You Agree?

 As per usual, my mind is all over the shop. I keep getting more possible conditions that are pretty much an obbious but just need to be confirmed now. I think I'm up to maybe 4/5 different conditions now and guess what they all have in common...... there's no cure just ways to attempt to control them and keep me as comfortable as can be. So I have my Gastroparesis as we know and I believe I have mentioned EDS to you before as well. EDS has many other illnesses that can occur due to that so basically it is screwing me over. There are also talks or POTS as well as TMJ which is to do with my clicky and sore jaw. And then there's the gluten whatever it is at the moment. POTS is to do with things like your blood pressure going up and down if you're sat down for a while or if you then stand up. It can cause hot flushes like I get as well. Once I know more about it I am going to write a whole post on it. :)

I feel like I am doomed as every time we figure out one condition, we find another one that I might have. I'm falling apart . Why can't life be easy??? I am trying so hard to remain strong and positive, but it is just soooo hard to do.
I look at my reflection in the mirror, and I see a 'normal' person... nothing looks different but if only my insides could be seen by everyone.. people might then start to have a clue how I feel day to day. It's weird because, my weight 

Don't worry about what others look like, look at what
you look like and be comfortable with yourself!

has always been so up and down because the Gastroparesis that I'm always aware of what my body looks like and I have become so used to being so small and skinny. It sounds silly but everytime I start (and have) put on a bit weight, I suddenly feel so big like I have a big stomach. Don't get me wrong, I don't think I'm fat, but with all the changes my body is constantly doing, it really makes me aware and kind of uncomfortable with how I feel and how my clothes fit which was never even in my mind before all of this. At the end of the day, when I look in the mirror at myself, I shouldn't be thinking about what others would say or think, I'm in affect talking to myself about myself. I don't need to impress anyone else and only need to be comfortable and happy with in myself. I still feel like when I eat, I am eating so much especially as I try and pick at things and do it small amounts but more often. I feel like all I am doing is eating and that I am such a pig and eating so much, when, it reality, I am still eating no where near enough and not the right things my body needs. I am seeing a dietcian in a couple weeks, so hopefully she can help me find the right things that I am able to eat that fits into both my difficult diets.

On a plus, I have a new job. I have quit my job after 5 and a half years of being in the same Hotel. I now get to work in the Studios helping with Big Brother. Although it is only a 3 month contract, theres's so much potential to make contacts or find something through it. Or, even just for a fresh start. I think that is what my mind needs right now. Something new to focus on around different people and a different environment. I really think it will help my mind set by gaining experience in something I really enjoy and even studied at one point in my life. My new job starts on April 20th which is sooooo soon. I'm very excited to start a new chapter in my life and maybe my health will play along and be nice to me and give me a break. HAHAHAHA who am I kidding?!?!


Well, that is all for now.... I wont bore you any longer
Have a good day and don't forget to
a) check out my YOUTUBE
and b) keep leaving me any comments with ideas of things you would like to know more about that I can make a post about.

Untill the next time

Stay Strong
<3

It's The Climb ♫

Hey Hey,

I have come to the realisation that, no matter what medication, or diet or thing I try to help my pain and Gastroparesis symptoms, is just not going to work long term. Everything I try works for a period of time before the Gastroparesis is like, BAMMMMM 'don't forget I'm still here'. The whole Gluten free thing has been working pretty well BUT, recently my tummy has been starting to get worse again. Safe options are becoming painful as well as the nausea. I've been on this long uphill battle for what? 4 years now is it? Everytime I get over one mountain there seems to be another whether it be a physical or emotional one. It's like one huge mental and physical gym work out that is a never ending climbing wall or treadmill with steep bits. I would say that's a pretty good evaluation of how my journey has been.  

 As I write this, I'm currently sitting here in pain. I have my gluten allergy test this Friday and to see if the anti bodies are there or an allergy is present basically I need to try and put gluten in my body. So for today (well the day I wrote this) and tomorrow, I've got to try include gluten in my body. Only problem is, my pain has been getting worse again without it, so trying to have some again isn't working out so well as I'd expect. I'm really trying because if there is any form of allergy I want it to show up. No point having a negative result if it's because I didn't have any in my system. It would totally defeat the point in doing it. So, as per usual, I have to suck it up and deal with the pain.

I can't remember if I mentioned it last time, but my anxiety is quite high again which sucks. I don't know why it's high though which makes it worse as I don't know what is setting it off. I'm just constantly feeling on edge and want to cry and just .. I don't like it. Music is keeping me going at the moment. My headphones are attached to me haha :).

My sleeping is absolutely horrible. I wake up every hour either feeling really panicy or feel like I'm over heating and stuck inside an oven. I'm so tired all the time because I'm not sleeping which is making me very snappy with people and short tempered. My patience is non exsistant at the moment. It's also starting to play with my mood again as well. I'm feeling kinda down in the dumps again.

I felt like I was starting to pick myself up again. I have been seeing my improvments in cheerleading with flexibility and ability to do things I was able to. I'm still holding down a full time job and managing to see people occasionally rather than never. Now that the pain and anxiety are coming back, I just feel like I'm in a hampster balls almost that just never ends and has no way out. I am feeling like what is the point of constantly trying and trying new things to end up going back down again and each time it gets worse and worse. I'm trying so hard to keep my head held high and push through everything if not for me, but for my family (and lil doggie of course). I want to make them proud. I want to show my younger siblings that they shouldn't let anything stop them from achieving what they want in life and that if they put their mind to something they can beat the obstacle. I'm trying so hard but when my mood dips, it's really hard to push through. ARGHHHH it just makes me want to scream!!!!(and cry)!!!!

I really wanted to make a big effort in posting more on both my blog and youtube channel, but with my mood, pain and tiredness (falling asleep for 2 hours when getting home from work and still in work clothes), it just makes it so hard to find the concentration to sit a write or sit and film then edit. Hard to focus and hard to get in the mood sometimes which then throws off my want for blogging more. Sometimes I consider doing more daily vlogs on my Youtube channel so that I can upload more but also it would really show people what it's like living with a condition. The struggles I face everyday with it and the things I want to do but can't always do such as make a new video or write a new blog post. Although daily vlogging is hard work and might not be everyday, it would really get across what I am trying to get across to people. Then again, doing that is hard work to edit and also film. Sometimes when you're not well or anxious, sticking a camera in front of your face and talking is not the one.

Anyway, I'm going to head off here and try put my head down. It's unlikely that I'm going sleep properly but hey ho... I can but try. Wait, is that the expression? Oh well, it is now for me :)

What do you do when you are anxious to try and keep calm?

Stay Strong

<3

What Is Life...?

Howdy Y'all

Today I thought I'd talk about something that has been on my mind. I use this blog as a release as I am not good at talking so that is what I am going to do. I apologise for the length and depth that may occur during this post so you may was grab yourself a cuppa or a cosy blanket and get comfy.

With everything that has been going on in my life, it isn't unsual that it is going to mess with my mind. It causes isolation in every aspect of life be it with family, friends, work or any other relationship and situations that occur on a day to day basis of life. I have discussed before about how I have felt isolated during family gatherings in the past or with friends and evenings out because of food and such. Even things like feeling guilty for friends who people who you are in a relationship with because, I feel like my health affects them and stops them having a normal life so to speak. When you feel down in the dumps, you isolate yourself and don't want to speak or hear anyone or anything else. It's horrible and can damage relationships and all sorts.
 

I feel like I have got to the point in life where I am just like ... what on earth am I doing with my life? My health has been the only thing on my mind for so long that I feel a little lost in life. I literally just feel like I have no aim or goal to work towards anymore. I have no qualifications past GCSE and a BTEC diploma and feel like I'm just not getting anywhere in life anymore. I know I have achieved many things in my life with everything that has happened but I'm the kind of person that wants to feel like I've done something good or helped someone or made a difference in a day. Does any of that make sense? In my head it does but I seems harder to explain when I want to try write it down and let it all out!

Even the word 'Impossible' says I'm possible

Do we live to work or work to live?
At the moment, all I seem to do is go to work to pay my bills and get to do what I want to do such a cheer. But is that how it should be?

Now that I am managing bigger gaps in between doctors, it just makes me have time to over think and wonder about people and just general things in and about my life. Like, what have I achieved since leaving school? Am I doing or using any of the skills of things I learnt at school or college? I suddenly have this feeling of emptiness and almost like I am just wasting my life and just doing things to pass the time.
 
Don't get me wrong, there are certain things in my life that I am happy with, but some..... not so much. I think it's time to change... to restart my life almost and do more things I want to do. We only live once. What's the point of saying 'I wish..' or 'I want to..', why not just do it. They say anything is possible right? I feel like I should write a list of things I want to do and achieve and just work my way through them to make me feel like I am actually living my life. It really irritates me when people say I am going to do this and then don't so why should it be any different for me. Tomorrow, tomorrow, tomorrow.... that seems to be everyones favourite word that is never ending.


Right.... I am going to go and calm down and relax, or at least try to.
Then, I'm going to write myself a 'To achieve' list and just start working my way through it.

I want to know what things there are on your list of things to achieve? I'd love to hear from you!!

Well, until next time

Stay Strong
<3





The Gluten Free Diet Vs Gastroparesis

Hey,

 

Long time no speak.

So last time we spoke, I mentioned that I had been told to try a gluten free diet. I'm around a month into it now and can see a remarkable difference.

Although I am still getting pain (some days worse than others) and can definately still feel a build up of food (Gastroparesis doesn't like to be forgotten), the bloating is basically gone for the most part aside from the really bad days. On those days, I have no choice but to just embrace the pregnancy look. HAHA!

 

It does seem to look like I have some sort of gluten intolerance so I guess the next step is to have the tests done for it.

I'm very mixed feelings about it all. It would be great if this was the thing we were waiting for and together with pain killers will help me get back to some sort of ''normal'' like without too much pain. BUT.... at the same time, a gluten free diet is so blooming hard. Gluten is literally in almost EVERYTHING. Between that and a Gastroparesis friendly diet, I feel like living off air would be far easier. I know it probably sounds diva-like and you are probably thinking, 'why on earth is she complaining if it has lowered her pain and bloating a lot', and don't get me wrong, I'm totally estatic that it seems to have reduced the pain and bloating for now, but I've got to the point of, I literally don't know what I can eat and how long this lessened pain will last. Between two very limiting diets, it's just making it so difficult to find things to try and eat. Even once I have then found something that should be ok, it is still unstable when it comes to pain levels. It's like I go through all this research to find half a douzen suitable things to still end up in pain of some sorts.

Another thing I have noticed since managing to eat a little more that you would probably tell me to shut up and stop being silly is, I haven't eaten much or anything for the past 3-4 years now and so, everytime I eat and think about what I have eaten during the day to try ensure I don't over eat as the Gastroparesis is still obviously there, I am constantly thinking, 'omg I have eaten so much today' or 'is this enough to be eating?' or 'omg I am overeating this can't be healthy' etc....It sounds so ridiculous and silly but it is like I have lost all knowledge of how much and what I should eat each day. All I want to do is eat normally like everyone else but it has so totally messed with my brain because I have gone form nothing to something which then suddenly seems like loads. Do I sound ridiculous? I do, don't I?

 

My mood as per usual has been all over the shop and I am feeling totally hopeless with my life. I feel like my life is a mess in every aspect and just needs sorting out. What do I even want to do with my life? I feel so deflated... does that even make sense? Was that the right word or am I just talking absolute sh!t? I feel like this post has totally turned into me just rambling on about everything that's swirling round my head but then makes no sense on paper.. or atleast when it is not structured in anyway. But, that just kinda explains and shows how my head is right now I guess. Real life people, real life!

AND BREATHE SOPHIE............. haha

I'll leave it there for now, let you recover from the gobble language that just occured. I'll be back before you know it... I promise... no long break this time :)

Thanks for reading and

Stay Strong
<3

Supermarket Allergy Outrage

Hey to you all,

If you are disabled, do you get charged more for parking in a disabled bay? NO

If you need extra help in an airport, do you get charged more for it? NO

So why do you get charged a ridiculous amount more for having an allergy and needing slightly moderated foods? It is absolutely outragous and I have no idea how supermarkets and other food places get away with it.

I've been unable to tolerate regular milk for a while now and have always thought it was disgusting the amount you get charged for soya milk. But, after having been to both Tesco and Asda in the past week to try get some Gluten Free products, I was absolutely gobsmacked. Just because someone has a Gluten/Wheat Allergy, how on earth do these people think it is okay to charge three times the price for half as much. It is basically punishing someone for having an allergy. I'm not being funny, I know things are expensive in general at the moment with times being tough and all that malarky, but us as customers are also not made of money. To charge these extautionate prices will end up causing more and more people with allergies to be unable to afford to eat a healthy diet. I've only been on it for a little under a week and already I feel for my parents pocket! They're going to have to take on an extra job or two each to be able to feed me at this rate... and I don't even eat all that much HAHA!

Not only are the prices ridiculous, but the quanitity and variety of products they do for Gluten and Wheat free is minimal. I know I am working off two different types of diets at the moment and both are very restrictive, but I mean seriously.... a couple of shelves in a huge supermarket is crazy. Not only is there not a lot of choice but that choice is lessened due to the fact the shelves just never seem to be stocked up much.
 I'm not one to complain about everything and anything but when it comes to health, it is one of the most important thing in life. Literally none of this makes sense to me.

Take this for example....

A Fraction of The Product.... OVER double the price!
£1.35 vs £3.00

In what way do they see this as acceptable? Because you have an allergy, you should either spend every penny (assuming you can afford it to begin with) you have on a tiny loaf of bread OR give yourself an allergic reaction but be able to afford more than a loaf of bread and go for the normal option?

I have nothing against either of these (or any other) supermarket but it really angers me. For that matter all food places be it where you buy food to make or a restaurant. I work in a hotel, within that hotel, there are 3 different food outlets. So in theory, one should be able to have a fair few options they can choose from should they have a gluten/wheat allergy. Is that the case? NO. Starbucks literally have one sandwich/wrap and one brownie. The pub and restaurant don't have many more options either. I'm not slamming them or anything,  unfortunately this is something I'm noticing across the board in restaurants and fast food type places. Dominos and Pizza Hut are one of the few pizza place that do a gluten free pizza base as far as I am aware. If you want Gluten Free pasta in an Italian restaurant though, you're out of luck. Or perhaps you're hungry and stop off at a petrol station or convenience store.... sorry, but you're out of luck because you will probably find nothing.
There is such a large market and need for 'free from' items throughout all these various food outlets but why is it not being done? Or if it is, why are you paying such a ridiculous amount for what options they do actually provide.

I know I am new to this whole gluten free thing, well very new.... like a little under a week new, but, a year or a week into this, it wouldn't make it any more acceptable, reasonable or fair.

I'll stop moaning now. I just truly think it is disgusting that because you have an allergy where you need 'free from' products, you get limited choice and huge bills.

What are your thoughts on this matter?


Stay Strong
<3



The Pacemaker Returns | Happy New Year

Hey Hey Hey,

HAPPY NEW YEAR!! - I hope you had a good one.

I'll start with my normal sentence..... Sorry I haven't posted in a while. :)
I feel like I never have time to stop and breathe HAHA.

Christmas was a relitively good one for me this year for the first time in about 4 years. Don't get me wrong, I was pretty anxious leading up to it and on the day but I was with my family and people I love rather than home alone. There were certainly points of the day that were really hard such as when I could smell of see Christmas lunch or when it came to nibbles at dinner and I was in pain. Put that aside and I had a nice day. I got to know people a little more that I didn't know, spent the day with my boyfriend and even had a sing song on SingStar with the family. At one point we were all dancing to the YMCA. It was nice to have some normality and be able to join in and have fun.

New Years Eve I was working 'til 10:30pm which meant I couldn't do a whole lot. So my colleague who I was working with that night is also my friend, so we just went over to the Pub in the same hotel and hung out with a few others to bring in the New Year so it wasn't so bad. What did you do to bring in the New Year?

In the last week or so, my tummy has been behaving a little better and I have been feeling the pacemaker A LOT. It feels like it is sucking in my stomach and then realeasing it. Sometimes it just feels strange but others it is actually a little uncomfortable. I have managed to have a few meals for dinner and then still walk a little. Although, as I walk, it does aggrovate the pain and gets more painful. I can't walk all that far but atleast I can move to the comfy sofa rather than a kitchen chair. Can't complain there I suppose. I have been pretty bloated though which makes the pain worse which SUCKS!
We mentioned this to my pain specialist when we went this week
and he asked which foods tend to bloat me the most. I'd never thought of this but it is always foods such as pasta and pizza etc.. He's told me to try a gluten free diet for two weeks as it is possible I could have a gluten allergy which could explain some of the pain and weird temperatures. Some nights whilst I'm asleep (or trying to as the case is most the time), I will suddenly get super hot and feel like I'm sweating, but then normal or cold the next. If I have an allergy to something, no matter what painkiller I try, my body is still going to suffer and feel bad but it is having an allergic reaction. I've never really looked up what gluten is in until now. And guess what? It's in pretty much everything. My mum is getting me some gluten free foods so we shall see how it goes and if it helps reduce the pain, swelling and other symptoms I get. If it does help, my pain specialist said he will do the proper test to check for allergies.

We also discussed EDS with him. Now, I didn't know huge amounts about this condition but have heard it mentioned a number of times. The more we seem to talk, hear and read about it, the more the possibility is that I may have that too. I know I know... I'm medical condition greedy... haha!
Many symptoms seem to fit things I've had through out my life and EDS can cause Gastroparesis. Between that and the gluten, it could explain a lot. BUT... before you get all excited, neither of those conditions are curable either. Yes, gluten allergy you just cut out gluten (easier said than done as I am finding out) but that is a big life style change and the same applies for EDS. There are ways you can try manage it but nothing to cute it. Why does my body go for all the ones you can't put a plaster on or take some Calpol and it goes away? Those were the days!

Well, I think I'm going to leave it there for this post...

Have a good day

Stay Strong
<3

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