Never Be Afraid To Voice YOUR Opinion

Hey Hey 

How you doing? I hope you are having a great day and if it hasn't been great just remember to smile and push on through. 

Today I wanted to vent out something that's on my mind. I've come to realise that a lot of the time arguments happen for one of three reasons (besides that awkward one that just wants to be different). The first one is just simply lack of communication. Be it because it all stemmed from a rumour going round that wasn't actually discussed before yelling or someone is just too quick to start an argument with out talking or listening to the other person first. I feel like this one happens a lot and part of me thinks it is due to how we see the world around us. We are all guilty of judging someone or something too fast... don't even try deny it because it is true. We also are too quick to expect the worst in people which I think is partly to do with all the wars and negative things we see in the world be it something we see/ experience in person or something we see through social media. Social media can be a great great thing at times and can really help people but it can also cause brain washing to occur. We are almost taught to expect the worst from people (people we don't know in particular) and that then means that we've made our minds up what someone else is going to say or do before actually giving them a chance which then means an argument is started for absolutely no reason... but once you commit to an argument - I mean - you're committed right? Well technically no but for some people that is the case.

Another big reason for arguments is this thing people have in their head of 'I am right, how I view and think of things is more important than how you view/think of things'. I think it is safe to say I have experienced this one a fair few times particularly over the past few years. Don't get me wrong, I feel like this is another one that we are all guilty of at some point in our lives until we can accept that every single person in life is going to have a different opinion on absolutely everything because that is just life... our brains are all programmed differently and we have all experienced and seen different things that will cause us to have different views or feelings about certain situations. I've learnt recently that it is okay to have different views and almost agree to disagree and to accept that I have a different perspective on something. I am someone who doesn't like confrontation, it makes me so uncomfortable and I've always been someone who will take a while to snap but once I do .... I do haha! Recently I have really been trying to brush things off and remember that that person has or is experiencing something that caused them to react like that or have that view and that is
ok. It is okay to have your own views and opinions on things. The only thing is, sometimes people forget that and make an argument out of it because they think that their experiences and thoughts are more important or the 'correct' ones. No-ones feelings or views on anything in life are wrong or right..... they're opinions based on experiences and their on morals in life. People have this tendency to need people to agree that they've had a worse experience, or seen worse than you or that they're point of view on that particular topic is how everyone should see it. That's where the arguments start. I know as a chronic illness sufferer I have seen people at some extreme lows physically, mentally emotionally and I have experienced them through my life as well even before all my health. That being said, I never thing I have had it worse than someone else, I simply say and explain that I can understand to some degree. I don't think nope, I'm right in what I think and you have to agree because I've had it worse or what I think is right and that's that. Sometimes though, people do think like that and sometimes it is on a topic that pushes you that bit too far that you can't just brush off because if hurts your feelings when you get accused of stuff because that person doesn't realise that there is no right or wrong, worse or better in that situation it is just simply each person's point of view. It is okay to have different views in absolutely everything in life. I'll stop going on about this one as I realise I've talked about this point quite a lot - it was kind of the reason I decided to write this post if I am honest. 


And for the last reason why arguments happen..... some people are just so damn ignorant and stupid and look for fights because they think it is cool or will make people like them or well.... I don't even know why! They are just stuuuuuupid.

Don't judge a book by its cover or
assume the worst in people

I think the point I am trying to make is that, we all just need to blooming chill the *beep* out. We are all entitled to different opinions and feelings and we shouldn't instantly expect the worse in people whether we know them or not. It is okay to think differently and voice different opinions and experiences. No one person's experience is worse because at the end of the day, each person's best and worst experience is different so how can it mean their's is worse than your worst? Does that even make sense? I know what I am trying to say hahaha (go on girl - being excellent at typing your thoughts as usual)!!! It is the same idea as what one person views as a slutty outfit, another views it as that person being comfortable in their own skin and wearing what they want to and not caring what anyone else thinks because as long as they are comfortable then who is anyone else to tell them otherwise. Just because you have a certain opinion or experience doesn't mean you are any cooler or any better or more important. We are all equal and we are all entitled to opinions and we should never think otherwise. When we feel the urge to fight back at someone for something they have said or accused you of, take a deep breathe and try assess what is causing it to try stop it before it happens. If needs be walk away calmly and talk to the person once you have breathed and brush it off so that you aren't all emotional. We won't be liked by everyone and not everyone will agree with us.... but that's okay. If everyone agreed it would be boring right? ... right? If we just communicate properly and don't assume things..... things would be so much easier :)!! 

Okay.... I think I have vented it all out now! :) 
Let me know in the comments (or on any of my social media outlets) if you've experienced arguments for any of the above reasons or if you recognise these and use that to your advantage in trying to stop arguments. W
I don't know whether this post is helpful or pointless (depends on your opinion I suppose haha) but it was something on my chest and something I wanted to let out ... so.... I did :) 

That's all for today. I hope you have a fantastic day/night (or whatever point in your day/week you are currently in) and remember..... smile. If you smile long enough, your brain will agree with it and think the same.... least that's what I get told!! 

Until we meet again.... 
Stay Strong
<3

Mental Health vs Physical Health

Hey Everyone, 

I hope you are doing fantastic and if you are from the UK, I hope you have had a lovely Bon Fire Weekend - mine consisted of me and my dog alone at home with him barking ALL evening. He isn't a fan of fireworks! 

Today, let's open up a topic that just isn't talked about all that much and has a huge stigma around it all. Mental health. It is one of those topics people just try and avoid talking about. And I can understand why, I mean it can be a very person subject and we instantly become very shut off and uncomfortable. It means talking about things we didn't want to. It brings up instant emotions. Everyone at some point in their life will know someone who has mental health issues so even if it isn't them who are suffering with it when a conversation comes up, they'll most likely know someone who is.

Mental health problems can often be part of a chain and can stem from many different things and completely varies between people (as with most health conditions.... it is what keeps doctors on their toes :) ). It could be from 1 thing or a few things or could just be one of those things. One thing it is often closely related and linked to is Chronic/Physical Illnesses. Let's start simple and break this does. Now, close your eyes (well maybe don't because then you can't read this unless you are magical... then you are pretty awesome), imagine back to the last time  you were sick and stuck in bed unable to move or function... how did you feel? Pretty darn crappy right?! Now... imagine that feeling and illness you had lasting for the rest of your life - oh and add in all the hospital trips & stays, test, accusations and life changing as you knew it. You'd get pretty low, fed up and lonely. You'd end up getting all these insecurities that you've never had before with life changes that are completely out of your control. You'd get all these new feelings that would effect you is so many ways you didn't realise were possible. And suddenly, before your very eyes, not only are you battling a chronic physical illness, but you now are also battling a mental illness. And just like that, you find your link between mental & physical health. (and breathe.... my fingers and mind were working so fast then... it all just oozed out my mind like jam does out a donut.... oo now I want a donut darn it haha!). Mental and physical health is not something to be joked around about though. It has massive life impacts.


It can work the other way as well. For example, let's say you have a mental health issue that  causes you to do things such as; stop yourself eating, make yourself throw up, overdose, self harm and many other things. Al those things can take its toll on your insides even if you can't see it and it can end up causing permanent physical issues due to the damage done to your insides. They are so closely linked (just like peanut butter and jelly/jam - oo now I want a PB&J sandwich.. dear oh dear) because well...... everything in your body is connected and so what happens to one part of your body can and will have an impact on all your other parts. It is like one big game of dot to dot.

So, next time you question someone's feelings or reasons for doing something or reacting a certain way, remember that just because they have been diagnose with either a physical or mental health condition, doesn't mean that they are doing it on purpose and that they are faking it or looking for attention and sympathy or thinks it would be cool and glamorous. You never know what battles other people are fighting or will end up fighting because of something else they are fighting or even because of what you or someone else says to them. Not everything is visible or said out loud. Many people choose to hide illnesses the best they can for whatever reason they feel. Sometimes people don't tell you because they are scared what you will say. Many illnesses be if physical or mental just aren't talked about. They are often topics that people make a stigma around and decide it shouldn't be discussed or make people feel bad for having it. That shouldn't be the case. All illnesses should be equal and shared. We are in the 21st century now people.... come on. 

I have no idea if any of this makes sense or has a point, but as with all my blog posts (and videos - matching one for this post on my channel now), I just type what is on my mind and hope for the best :)!! But seriously, please remember that every action causes a reaction and every physical chronic illness can (and often does) cause a mental illness and every mental illness can (and often will) cause a physical chronic illness. It is like one big science experiment! 

Well, that is all for this post. I would really love if everyone can start up a conversation about this and help support those who need it. Spread the love.

Stay Strong
<3

Staying Motivated & Inspired By....

Hey Everyone

I hope you are all doing well?

Over the years I have had my fair share of highs & lows.... I mean who hasn't right? The thing with life is something that happens or something you do today can and probably will effect you tomorrow and even many years later. I am slowly learning that we can choose to either let them get us down and we can make excuses to not do something OR we can use them to motivate us to do better, work harder and spread love and positivity. Don't get me wrong, I am not miss positive all of the time (or most the time for that reason) and I go through many patches where I 'm quite the opposite. Ask my family.... I am sure they'd happily vouch for that. BUT I have noticed that when I do certain things like watch youtube videos of whatever takes my fancy that day, it effects me in ho I am thinking. It is kind of the same thing as surrounding yourself by positive people and you will have a positive mind. The way they spread love, support & positivity just makes you feel so much more confident and not alone. Their work ethic and just life values really inspires me. 


I'm not writing this to sound like a weirdo stalker or obsessed person but to share with you things/people that really genuinely help me get through life in their own way and helps me stay motivated and inspired which, in a world that has a lot of negativity these days is something special. I swear... I'm normal... okay well not normal but not a weirdo either hehe :) 

The 4 people that really inspire me are Demi Lovato, Lilly Singh (iisuperwomanii), Zoe Sugg (Zoella) and my very special mum. Whether it be their music, videos, cuddles, positivity, girl love or support, that is what keeps me going and fighting obstacles thrown at me. I may not know 3 of them in real life (though I should be so lucky to even meet any of them let alone be able to call them a friend) but the way they are using their voice for good is what makes them relatable.

I recently watched Lilly's 'A Trip To Unicorn Island' movie, and honestly.... I felt so overwhelmed with motivation to work harder for what I want and positivity and love.I felt so blooming inspired after ... like just wow. The way she does stuff to help others expecting absolutely nothing back in return but working towards her goal just as hard.
Demi Lovato has overcome so much and has then used that to help so many others instead of giving up. Without her music be it the sad songs or the upbeat songs that make you feel confident and motivated... I wouldn't have got through many of my rough days and nights. Let's be honest we all have those times we just want to curl up in a ball on our bed, headphones on away from the world :)! It is like a way to let everything out in a healthy way by just listening (or shower singing) to the lyrics of the song and being able to fit it in to whatever it is going on in your life. I read one of her quotes and goals every morning before I start my day from her Staying Strong book which helps me start my day off well!
When my anxiety is high, Zoe's videos help me and remind me I'm not alone or crazy and can't still live my life achieving anything my heart desires. It shall not

defeat me!! There will be bad days but there will be even more good days.

And my mum (my dad too but I mean a mother daughter relationship is something special) - without her love and support I would most certainly have no motivation to fight or even go to doctors appointments. Sometimes a mummy cuddle is just the medicine needed. If and when I one day have kid(s).... I can only dream of being half the mum she is. The way she puts everyone else before her, the kindness... the list is endless honestly. I can't imagine not having her around to support me and love. Money and objects are just that.... objects. They aren't what truly makes you happy.... having even just one person there who you know has you back and best interests at heart no matter what is what warms your heart!! 
I also have one friend in particular (shh.... secret 5th person) that is there for me through thick and thin and always makes me feel good about myself. She reminds me that I can do whatever I want and anyone who puts me down or takes things out on me constantly just isn't worth the upset or the frustration because it is my life and I am in control of who I keep in it with me. With out her I would never laugh the way I do nor would I feel loved by anyone aside from family. 

All 4 of them have their messages of working hard for anything you want and believe in because it won't just fall on your lap, treating others well because even just a smile can change someone's entire day but most importantly, you do you because that's what we all do best... believe in yourself and love yourself. There are always going to be bad days and the truth is.... not everyone will like you, but that is okay and well... life!! You can never please everyone so as long as you are doing things that you truly believe in and are happy with.... go and blooming do it!! I definitely feel like I am beginning to find myself and what I want to do in life. Even things like filming certain youtube videos just because that is what everyone else is doing.... no Sophie - film what you believe in and are passionate about and it will shine through and you will be so much more content. It goes with everything in life.... don't just do something because that is what someone else is doing .... if you don't really want that you won't be content. So cheesy but would you jump off a cliff just because that's what those other people over there are doing? I very much doubt it!! 

I could literally go on forever but I won't bore you. I just wanted to share some things that have really inspired and motivated me helping me get through life and start achieving things I genuinely am happy with. I wanted to share some love and positivity and remind you that you are awesome.... I have definitely be thinking and seeing things in a very different way lately and even believe in myself a little more. 


You can choose to be happy and you CAN do absolutely anything you set your mind to ... with hard work and passion. Share the love... we should be celebrating people's success and not putting them down through jealousy or hate. 

Okay I'll shut up now.... 

Have a lovely day and remember.... You Can!! 

Stay Strong
<3

Mentally or Physically Worse?

Hey Everyone,

I hope you are well and having a lovely day.

I thought I would give a little insight into how day to day life has been recently with my health not being at its best (then again when is it?). A lot of people will just see this girl who says she has all these illnesses but still works full time and does cheerleading. I get it.... it must look quite confusing to those who only see my 'I'm okay and well and happy and living life' act that I do everyday to survive in life. Don't get me wrong, I know things could be a lot worse to the point I can't do that but people also don't realise that there is a LOT that they don't see behind closed doors. Don't judge a book by its cover type thing. It is the same with anyone regardless of an illness or not. You see what people choose to let you see and they tell you what they want you to hear. I don't mean people are lying but lets be honest, when someone asks me how I am, they're expecting and want a 'yeah I am good thanks how are you', they don't want a whole conversation about all the fainting, nausea, pain, doctors appointments (and there are a lot), medicine changes etc.... I mean serious though - who's got time for that several times a day? Plus, if you haven't experienced living with a chronic illness you just won't truly understand how I am feeling mentally.

Recently my blood pressure has not been behaving. I have had quite a few pretty nasty episodes over the past couple months with my blood pressure going so high that my body goes into shut down and I literally lose a few days to week of my life because I just don't remember any of it and am just not there. It is horrible. If I am totally honest, as much as it wrecks my body and takes me a fair few days to recover physically, it affects me more mentally. I am so lucky to have some amazing family and friends who stick by me and look after me and yet after them doing literally everything for me for how ever many days whilst I am out of it, I don't remember any of it. I can't say thank you if they have come round to look after me because I don't remember it. I know that they are fully aware I am truly grateful and can't thank them enough but for me I just find it horrible being so unaware. I have the same conversation about something with my mum about 7 times over and still can't remember any of it. I sit talking to my best friend who comes to see me.... and I don't even recall it and have no idea what she is talking about when she mentions it. I know these people don't mind but for me personally.... it really gets to me. Then things like missing half a week or so of work every other week, I know it isn't my fault and they can't say much even if they wanted to but I feel bad. It makes me feel like I am selfish for staying in a full time job but not being able to work full time in reality because of all these sick days (and appointments). Someone else could be doing my job and could be there the whole time that they are needed. I know it may all sound silly but these are the kinds of things that go through my head when something or someone is affected because of me and my mucked up body.

Mental Health Pain is just a
painful as Physical Pain

I've still been having Ketamine injections every 2-3 weeks which are helping with my day time pain but still only taking the edge off after eating. I can't get up and go still! I've also been taken off the Midodrine as they think that could be one thing contributing to my crazy blood pressure. They also slowly want to bring me off all my medications and then reintroduce them slowly and see if I can start cutting any out because my little body can't cope with all the medications I'm being told to take!! Each specialist just keeps adding a new medication on for whatever they are helping with but the problem is, they aren't communicating between one another or taking into account any other medications I am on to ensure it isn't going to cause any unwanted interactions. I get that each specialist is concerned about the part they specialise in but if you think about it, everything in your body is connected. So basically what happens to something in your brain will effect other parts of your body so in reality these doctors really need to be looking at the bigger picture. Not just their puzzle piece. But what do I know.... I'm just the one suffering! I am VERY lucky to have 

my pain specialist that I do because he genuinely cares and only does things that are in my best interest rather than getting me 'better' and shipping me out. Without him I would have had so many A&E and ambulance trips recently. I would be on even more drugs than I am on and potentially some strong pain killers that are going to end up killing me. He always makes time for me and always looks at every part of the body. He is the only one to keep an eye on my blood tests and levels of stuff which is kind of important - least I thought so.


Anyways, that aside, life has been a rollercoaster to say the least (ah that makes me want to go on a rollercoaster... just not sure how my head would deal with that haha). That being said, through all the emotions and physical issues I've been dealing with, I have been inspired and encouraged by people I have never even met. Someone I spoke to ages ago when I first started my blog and my Gastroparesis video and ITV news segment messaged me the other day. It was the day after another one of my horrible episodes that really took its toll on my body and on me mentally. My day was just going so badly... I lost all my motivation I had suddenly gained and felt like giving up. I received this message that was only a paragraph long but it changed my entire day and my entire mind set. It made me realise that I am important and do make a difference in the world and can help people in my own way. I can achieve things and use these horrible obstacles to get me bigger and better places someday.
When we say something to someone we don't know the impact it can have on them. A message from a stranger (well kind of a stranger... I've chatted with her previously but not for ages and never met her) and my day has gone from 'I'm done, I can't do this anymore' to 'I can do this, I am going to do this and going to work hard for what I want and not let people get me down'. She probably had no idea or intention to do that but simply by sending a kind message and spreading love she has for all intense purposes 'saved me'. The thing with mental health is once you get into that spiral..... it is very hard to get back out of and tends to spiral downwards extremely quickly and dramatically. 

Well... anyway, I will leave it there as I'm sure I've taken up enough of your day :)
Just remember, even that small smile and hello can completely change someones mindset, mood and day. Spread love and nothing else... well and awareness about things that matter but you get what I mean!! 

Have a lovely day/evening/week/month and year and I will chat with you again soon.

Stay Strong
<3

What is PoTS?

Hey Everyone

I hope you are all having a good day :) 

October is PoTS awareness month and is one of (the many) chronic conditions I have. So... I thought it only right to help raise awareness about what the condition is and help make those who have the condition feel a little less alone.... because it can feel lonely at times! I have made a matching video for this so if you are more of a watcher than reader there is that option too :) 

What is PoTS?
PoTS stands for 'Postural Orthostatic Tachycardia Syndrome'.... quite the mouthful right? 
Normally when you do things like sit up or stand up gravity pulls some of your blood to places like your feet, hands and belly. This then causes the blood vessels to quickly narrow and your heart rate increases slightly to maintain blood flow to your heart and brain so that your blood pressure doesn't drop which is always helpful! All of this is done by what is called your 'Autonomic Nervous System' without even having to think.
In PoTS, your autonomic nervous system basically....doesn't work properly. You end up having a drop in your blood supply to your heart and brain when you become upright and your heart then races to compensate. Basically your body just doesn't like to be upright!

BUT..... as with any chronic illness or any illness for that matter, all this comes with some not so nice symptoms which I won't lie .... SUCKS!

Symptoms can include;
- Dizziness                                                     - Headaches                
- Lightheadedness                                         - Insomnia
- Fainting                                                        - Chest Pain
- High Blood Pressure                                    - Nausea
- Heart Palpitations                                         - Shortness of breath
- Shaking                                                        - Brain Fog
- Sweating                                                      - Skin Discolouration
- Fatigue/ Weakness                                      - Anxiety


Obviously as with any illness everyone gets different symptoms to different degrees. And everyday is different!

There are a few things that have been said and I personally can vouch for that aggravate symptoms making them worse. Things such as heat, eating, exercise and being on your period (seriously... boys have no idea how lucky they are to not have periods).

{I also included some of other peoples symptoms and triggers on my video so it wasn't just from my point of view so click HERE to go watch that}

We have also learnt that many symptoms you get with PoTS overlap with conditions like EDS and well..... many others. So just because you have these symptoms doesn't definitely mean you have PoTS.

How is it diagnosed?
There are a few different ways to diagnose PoTS. One thing I will say is that PoTS can often be mis-diagnosed as anxiety and panic attacks and that is if you find a doctor that even believes you to start with.
PoTS is diagnosed if your heart rate increases by around 30 beats per minute after standing or if it increases to more than 120bpm... or there abouts anyway.
You may have one or more tests to help diagnose the condition and they could be ones such as: 

• The Tilt Table Test: (This one is probably the worst one) It is where your heart rates and blood pressure are measured while laying on a bed, and then the bed is titled into a more upright position while more measurements are taken.
• The Active Stand Test: This is where your heart rate and blood pressure are measured after lying down, immediately upon standing and after 2, 5 and 10 minutes.
• An Electrocardiogram (ECG): This is a test of your heart's electrical activity.
• An Echocardiogram: This is an ultrasound scan of your heart.
• A 24 Hour Blood Pressure & Heart Rate Monitoring: Small devices are attached to your belt to then be able to take regular readings of your blood pressure and heart rate whilst you're doing you're normal activities.
• Blood Tests: These are to test your kidney, liver and thyroid function as well as measure your blood count, calcium and glucose levels.

Reducing/Controlling your symptoms:

Whilst everyday is going to be different to the last and what works one day totally doesn't the following day, there are a few things that can help reduce and control some of your symptoms.

The one I personally find the most effective is drinking plenty of fluids and making sure I stay hydrated. We are all guilty of just forgetting to drink throughout the day but it really does make a difference.

Another one I find really effective is keeping active. I don't mean do exercise until you pass out... you need to pick what works best for you and it is a little bit of trial and error. It can be things like a walk, pilates, swimming or doing something more strenuous if you're able to. Keeping active helps maintain better circulation which in turn helps keep a better blood pressure and heart rate. It also helps mentally! Double whammy :) 

I haven't personally tried this one yet but wearing tight compression socks (kinda like what you're given on a plane) as these help improve your blood flow in your legs meaning your legs share some of that blood with your brain or heart... yay!

Super tricky in life sometimes but where possible avoid standing for long periods of time and when you come up from lying down or sitting down.... do it slowly!!!! Trust me.... it really doesn't feel very good if you do it too fast. 

In terms of foods and drinks, avoid driving lots of alcohol or caffeine and include more salt in your diet (unless you have high blood pressure or heart disease.... then have less salt!).

There aren't however any medications licensed for treating PoTS however your specialist might suggest trying a "off label" medication like Midodrine or a Beta Blocker/Ivabradine. This means it hasn't undergone clinical trials but is believed to be effective.

What causes PoTS?

In many cases the cause of the problem is unknown.... typical right?

In other cases there are some known causes and things that are very closely linked hand in hand. Some of the known causes are:

- Joint hypermobility syndrome / EDS : this is a condition where the "glue" that holds your body together basically doesn't do its job. It results in unusually flexible joints and abnormally elastic blood vessels. - I have done a full blog post on this condition so click HERE if you would like to head over there to learn about that. I've also made a video on that over on my youtube channel!!

- Underlying Conditions such as diabetes, lupus, cancer, chronic fatigue syndrome (CFS) and a few others.

- Poisoning with alcohol or certain metals

- Viral Infections - the good old one doctors like to say and sadly is true is that viruses can unfortunately sometimes cause nasty after affects and problems

- Inheriting a faulty gene that causes too much of the "fight or flight" hormone noradrenaline to be produced

I am not a trained doctor (though I actually feel like I would really enjoy it) so if you think you might have PoTS or something similar please go to a specialist and ask for advice.

Having any chronic illness can have a massive impact on your mental health along with a ton of other things. It can feel super lonely at times or even make you feel like a crazy person. Please remember you are not alone and most certainly NOT crazy!!! I completely understand how you feel as does millions of others in one way or another. You are stronger than you think and you most certainly can beat your body and still achieve things you want to. Remember... losing is not an option!! :) We are in it together and if we stick together, spread love and awareness and help one another.... we can and will achieve absolutely ANYTHING! 

I really hope this helps you understand a little bit more about what the condition is and all the things that go with it. Remember, it might take a few seconds to share a post about it but people with the condition experience these symptoms every single day all day and night.... we need more research to be done to find ways to manage this condition. So ... please please please share this post and help spread awareness about PoTS..... Just because it is an invisible illness and you can't physically see it does NOT mean it is not there or not real!! 

That is everything for this post so all that is left to say is have a lovely day and remember to smile :) 

Stay Strong

<3

Words Can Hurt!

Hey Everyone, 

I hope you are all doing well.

Today I wanted to discuss something that is a much talked about subject. We all know that words we say to others can really affect them in many ways and it is no different for chronic illness sufferers... we are still human (or bionic if you're like me and have a pacemaker hehe) and we still get hurt by words and ways people treat us. 

Here's the thing, I spend A LOT of time at various hospital appointments to the point where I have at least one almost every week for months straight. It is exhausting mentally, physically and emotionally - especially when you don't see much or any improvement in health or quality of life. I go to these appointments and tests to try improve my quality of life and to be able to try get to a point where I can live some what of a 'normal' life. That being said, in trying to improve my health and getting a life, I spend my life back and forth to doctors appointments and having to have a ton of days off work (which makes me terrified to lose 

my job if they get that fed up with the amount of time i require off) and not having a life! Now if I was seeing major improvements and things coming out of all these tests then it would be so bad, but, when things for the most part don't improve and nothing changes from all the drug trials and appointments and tests..... how would you feel? Would you feel like you are making the most of your life or wasting your life? I know it only takes that one test, or one doctor or one medication that could be 'the one' that makes my health better to improve my life but how many years am I supposed to keep going to appointment after appointment in the hope of improving my quality of life before I give up and just make the best of what I can or before I accept that doctors just don't have anything they can do to help? 

I always get anxious about asking for days off every 5 minutes for more doctors appointments as I don't want to lose my job. Sure it is not the job I've dreamt about and probably won't do it for the rest of my life but it still really bothers me for a few reasons. Firstly, holding down a job is my way of living a 'normal' life like healthier people. Secondly, it is a way to distract my mind from everything going on with my health as if I were to sit at home everyday I would go insane and just become depressed because of it and let my health completely ruin my life. Thirdly, like everyone, I need the money to be able to live and do things I want to. Everyone always tells me I need to think of my health and what my body needs more and that it is more important than a job, and whilst that is true in my mind as a chronic illness sufferer with illnesses I know I have for life and illnesses doctors just don't know enough about and realistically don't know what to do so they palm you off with tests and onto other doctors who do the same. I know that doctors appointments aren't going to end. It's not like an infection or an illness where you go to a few appointments have some antibiotics or medication and bish bash bosh the appointments are over and you can go back to normal. But... imagine having to do that for mostly likely the rest of your life. Imagine constantly having to let people down because a last minute appointment has come through. Having a full time job which you agreed you could work and then needing to do a 3 or 4 days week each week because of appointments.... are you seriously going to think about your health coming first each time OR are you going to get stressed about trying to keep a job because you know this illness for life and there are always going to be more appointments and which eventually is most likely to cause a problem with your manager because of the amount of time you need off and what they need for their business. Although they can't legally they can't sack you due to your health, they can make your life difficult until they manage to push you out by you quitting in which case your life is made more difficult and ends up in a horrible cycle which means more stress and in turn means your health is affected and deteriorates because of it making you more unwell that you were to start with.

If I were to lose my job because my health, not only would I suffer financially but more so emotionally and mentally because to me that is about the most normal thing I can do to feel like my health isn't completely taking over my life. So to me, when I get upset about appointments and more tests and more time off work and someone tells me 'well if you don't go to these appointments you won't have a life because you won't get better' I get so many emotions rushing through me that causes me to then snap. I get where they're coming from but it makes me so frustrated and sad and mad because all it feels like to me is I am spending my life going to drs to make my life better when in actually fact I am having no life because that is all I am doing with it. Can you see where I am coming from? Like how long do I keep going in the hope that something will help when in the 5 years this has been going on barely anything has been done with the test results and if it has, the majority of what has been tried hasn't worked and sometimes even caused worse symptoms because of side affects. It is easy to say to someone it only takes the one tablet or one doctor but when it is an on going thing and next to nothing is helping it isn't so easy to keep doing.

Everywhere I go or a lot of people I speak to who complain about life or health and how something is affecting it can really get to me at times. For example, I over heard a conversation someone had earlier today about their broken arm (which was operated on) and how having to go back and forth to the fracture clinic for the next 3 months is so frustrating and so inconvenient with work and life... now imagine having to go back and forth to hospitals and being prodded and poked for the rest of your life with the majority of those appointments really not doing much. It really frustrates me and I know we don't appreciate things or understand things until we experience them or lose them but I just don't understand why people feel the need to get wound up by my mindset or mood or nasty when I get upset by things life the millions of appointments. I'm 24 years old, I should be going out in the evenings after work and having the weekends to have fun but instead I am just schlepping from one appointment to the other and then being too exhausted for anything and in turn having no life. 

Sorry for this rant but it is something that has been on my mind for so long. Don't judge someone or be nasty to them or tell them they are being stupid when you haven't walked in their shoes. And that goes for anything, not just when it comes to chronic illnesses. Just like when people say people who commit suicide are selfish.... no.... they are not. They are in such a low place and state of mind and are dealing with an illness at the end of the day. You 

don't understand and may not agree with the thought process they are having as an outsider because you haven't experience it, you obviously haven't been in a place where you mentally, physically and emotionally just can't cope any more and can't see things ever getting better no matter what you try or who you have around you. You wouldn't tell a terminally ill cancer patient who decides against treatment so they can enjoy the life they have left to the best they can without the constant hospital trips and medication side affects. So why is it any different for other illnesses? Why can't people accept the sufferers feelings and thought process and frustrating without saying they are being stupid as it only takes one doctor or medicine even if it is 10 years down the line?


Please just understand that all of these physical problems cause so many more mental and emotional issues of which you can't see and can't truly understand unless you have gone through the same or similar. 
I'd love to hear your thoughts on this subject so please leave them in the comments below or on any of my social media (click on the word for the place you want to magically appear to join the conversation - Facebook - Instagram - Twitter)

That's all for now .... Have a wonderful day, evening or sleep where ever in the world you are (and whatever time is is obviously).

Stay Stron 
<3

That's What Makes You Happy

Happy Sunday Everyone,

I hope you are all doing well and enjoying the long bank holiday (if you're in the UK)!
Sorry in advance that this is a little long but it is worth the read... I promise.

Over the years I've had periods of time where I have been extremely low and periods of time where I have been happy with life. I've had different definitions of what I feel makes me feel happy and sometimes have even felt low because I thought I could never be happy because of my extremely poor health. I've been so low that doctors, friends, family and work colleagues have notice and mentioned about it and the 'd' word ('depression') has been used on more than one occasion.

Before my poor health properly kicked in (and after tough years in school from bullies) I was enjoying life... I had great friends, great family, was enjoying college (never saw home I was out so much), loving living my dream of acting and then had the most amazing, life changing experience when I did Camp America. Sure, life wasn't perfect and I wasn't living my ultimate dream of living in America acting in movies and tv shows but I was enjoying life, had great people around me and experiencing a ton of things. My life then got turned upside down and it felt like I lost everything. I thought I'd lost all my friends and lost all hope of being in the entertainment industry and that my life was over. I felt like I would never eat again and was praying my life would just end (sorry if that's a lot to read). Nothing I was doing every went the way I wanted it to go and I just couldn't see myself every getting through it. I didn't want help from anyone and didn't want to go out or see anyone. I was finding ways to get through it and release all this negative energy in ways that just weren't healthy which I have never really gone into with anyone. I completely lost my way!

Over the past 6/7 months, my health took an even bigger turn for the worse and even more symptoms and conditions came to light. Once again, my negative mind set hit even further down that rock bottom. However, more recently, even though my health is still shitty (mind my french - sorry mum) I'm seeing things in a very different way. I'm managing to turn my negative thoughts into more positive ones, wanting to talk to people a little more and am beginning to find my way again. Don't get me wrong, I still have days where I want to curl up and not see or hear anyone - it is an on going thing. Nothing worth it is easy in life or happens over night.
I always had this vision that I would only ever truly be happy if everything was perfect and my health and body was in perfect shape. I became self conscious and felt down about things I've never felt like that about before. We see this image in Hollywood or even people around us who are all smiles and seem so happy with their (what we think is) perfect lives and if ours don't match that ours can't be. I would only ever see the negative in everything and was rolling out of bed not wanting to face the world.

There are all type of videos on the interweb... some extremely uplifting and inspiring and some that are ... well.... interesting lets just say. I became really inspired by the journey of a few youtubers in particular along with certain 'celebrities'. People who know me will know my absolute idol and favourite singer/actress ever is Demi Lovato. Between her, Miley Cyrus, Selena Gomez, Marissa Lace and Claudia Sulewski, something triggered in my head. They taught me that happiness comes from within. If you don't love you how can you expect someone else to? If you don't help look after yourself why should anyone else put their energy in trying to help you? If you take control of you life... how can you expect it to magically happen the way you want it? No amount of money can buy true happiness that will last.....

All the people above (and others of course) have said that happiness starts from within and that positive vibes bring in positive things. Everything we go through teaches us a lesson in one way or another and happens at a time where we are tested. Looking after yourself and seeing things in a positive way can really truly make a difference. These are the main points that I have been trying to

incorporate into my life:

• Making time for me every day.
• Starting the day by reading a page of my Stay Strong book that gives me an objective for the day to think about.
• Doing something about one thing that bothers me and trying to find ways to achieve things I dream of doing and not letting anything make me believe it isn't possible.
• Including some form of exercise or body condition every morning before starting the day (even just 2 minutes)
• Be more aware about what I put into my body
• Cutting people out my life who don't make me happy or bring positivity in my life
• Appreciating who and what I do have in life
• Remembering that being kind/friendly to everyone be it a friend, family or stranger can really change the way their week is going or even their day. - even just a simple hello how are you.
• Setting myself a goal/s that I know a practical and can be achieved with hard work
• Remember that everyone is growing through their own insecurities and difficulties that you can never truly understand but a simple hey or how are you can help them through the day. Being nice goes a long way

Regardless of how happy a person you are, some days are just harder but I have honestly noticed a huge difference just by doing the above 10 things and so have others around me. Don't get me wrong, I still have negative thoughts at times and let things get on top of me but I feel so much happier and have started seeing a future again. My little morning routine sets me up for a much better day. If you make an effort to turn the negative into a positive it starts to become more natural to think positively or at least have start thinking about both. Everyone is differently obviously but here is a quick break down of what I have been doing that has really been helping me to be in a much better place;

I get up in the morning, take my medicine and read that days page of my Demi Lovato 'Stay Strong' book that has different inspiring and encourages for each day. Once I have done that and been to the loo and all that jazz, I do a minute or two of mixed types of planks. Now although it is only a couple of minutes, it makes me feel like I am doing something good for my body. I then try and pick out healthier small snacks for the day rather than just chocolate and crisps (they're still included though duh) that I can keep myself going for the day. Once I have done that I then get myself dressed and ready for the day. I've started trying to turn negative things or things I thought were horrible into positive things and ways that they are a positive thing. Although none of these are major things, together they all work together to have some positive structure to my own life. 

In doing this, I have started feeling a passion about things I had lost passion for or had given up on. It has shown me that everything can be changed when we put our mind to it. Happiness isn't about having the perfect figure, or perfect health and a ton of friends with a huge pay check each month. Happiness comes from what we make of life. If we don't make an effort to work towards what our heart desires and how we choose to make our life. If we have people around us who put us down all the time, how can you ever feel good about things? How you wake up and start your day is what sets up the rest of the day. We will never be able to make everyone else happy with what we do, but as long as we make ourselves happy.... who cares!

I've started looking into things that I want to achieve and experience in the future and begun to find me again. I've learnt who my true friends are and to be honest, I wouldn't even say I lost any friends in the process, I've just found out who were actually friends and who was there for good times and for them. The mind is a very powerful thing. What is the point of just existing? Why earn money just to live when you can earn it to experience things that will make you never want life to end and make you love it and smile. A smile is priceless!!

I'd love to hear the things you do and what things you would say are what really makes you happy.

Have a great day

Stay Strong

<3

Midodrine Drug Trial Update #2

Hey Everyone,

Hope you're all well and have been enjoying the sun (if you've had some) 

I thought I would do another update on the trial of Midodrine for today's post. It has been just over two weeks since I had the first dose now and I can still see a slight difference such as I can get out of bed without collapsing (bonus!). It definitely isn't as affective as the first few days/week of taking it but that could be one of two reasons I guess. It could either be because I need a higher dose/ more often in a day or it could be my body being my typical body and accepting something for a week then laughing at me and stops it working any longer. Guesses as to which it is with my track record but trying to stay optimistic!

I am still currently taking 1 2.5mg tablet every 4 hours (3 a day) which to be honest is a bit of a pain in the behind but I understand they have to be careful and do it slowly. It just means the earlier I start the tablets that day (such as a work day), the earlier in the evening/day they all wear off and I feel like absolute **** but they have to be careful my blood pressure doesn't shoot up and get too high as that is dangerous. Slowly does it as they say. So far my blood pressure has been stable as we have been monitoring it at home because I wasn't allowed another Ketamine Injection when I last at my pain specialist and so I was told to keep an eye on it between then and my next appointment with him and he will the decide if he is happy to do another injection. The reason for that is Midodrine raise your blood pressure as does Ketamine so, doing Ketamine right after starting this medication would be silly and potentially dangerous. If both were to raise my blood pressure to high, a blood vessel could pop or something. That wouldn't have been so good!! My pain specialist really cares and doesn't want to see any medication cause me harm now or in the future so he is extremely careful. I totally understand that it has just been hard as the Ketamine definately helps the pain to a degree so the pain as got worse during the day again and then when you put food in the mix.... well... lets just say it doesn't make me a happy bunny after! 
I've still been getting quite bad headaches throughout the day even when the tablets are at full effect but... I've not been fainting so it has definitely made a difference when you look at it like that. It is just annoying because my day is so short and I really have to plan my day around the time the tablets end and when I need to take them. I have 3 alarms a day on my phone to take a tablet... that is what my life has come to BUT if it helps, I am A Okay with that! 

In terms of how it is helping my eating - I'm still getting very drowsy after eating and go in and out of ... well potentially sleep or potentially consciousness. We are not too sure which one it is which is why they want to do a Gastric Emptying Studying (4.5hour test) whilst monitoring every part of my body at the same time I eat and for a fair few hours after to see what it is that is happening when I eat. So keeping an eye on blood pressure, sugar levels.... absolutely everything in theory! I am managing to eat a little more but that is purely because I am not having those 'funny' turns after so it is easier to eat as I don't worry or feel bad about my parents and siblings having to deal with the after effects and then I feel absolutely awful physically and mentally after and the following day. This then results in a tiny bit more energy which is quite nice not going to lie. Mind you I still pay for it the following day! 

In terms of just everyday when food isn't involved, it definitely makes a difference and I am not feeling as faint or fainting but i'm still feeling funny when I stand up and have headaches all day everyday. I am able to walk around for a bit longer before feeling dodgy which is always nice so I have managed a few dog walks and of course... a few shopping trips. I still have headaches through the day and feel a bit wobbly when I'm walking but it is nowhere near as bad which is super nice and a major change. It also has allowed me to spend the day with my mum on my birthday and then go to the cinema in the evening. Although I didn't feel great I was able to get out of my bed and do things which 2 weeks ago I couldn't. I never really get to spend time with my mum unless it  is for a hospital appointment so it was so special being able to spend time with her away from all of that for 1 day!! I'm still having to lean on things a bit and sit/lie down every so often to steady myself and try calm the lightheaded feeling bit it is a big improvement! 

Overall though for the lowest dose, it is the first medication to have any real effect and that has lasted more than a couple days. So I'm pretty happy with that!! I get to add an extra tablet a day in a few days time so I'm hoping that makes a little bit of a difference and improves the length of my day if nothing else. Like before, I am not going to get my hopes up as there is nothing to say that with a higher dose things will get better as in theory they could also get worse or back to where they were but I am hopeful that this will continue to help even if it is only in a small way. Every Little Helps and all that jazz right? 

I think that covers everything for now but I will of course do another update soon. If I missed anything out I will add it in next time or into another post or something. OR if you have any questions please do just let me know. I am also thinking of starting weekly vlogs on my Youtube channel which I will include little updates in and see how those do so be sure to head over and check thought out - www.youtube.com/thedramaqueensoph 

I hope you are all well and enjoying May!! 

Stay Strong
<3