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

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

What is E.D.S?

Hey Everyone
How are you all? Enjoying the sun?

HAPPY MAY EDS AWARENESS MONTH: 
So incase you couldn't guess, for today's post I thought I would talk to you all and explain a little bit about Ehlers-Danlos Sydrome (E.D.S). It is a condition I have been diagnosed with and one that is not really known or understood by people. I did a matching Youtube Video 
explaining E.D.S so if you are more of a watcher and listening than a reader, I hear ya but also you can click HERE and it will take you to it. If you like to read or do both.... Lets do this! 


Ehlers-Danlos Syndrome or E.D.S as it is known for short is an inherited condition (but it could be that you didn't inherit it and are the first to get it - everything gotta start somewhere eh?) that affects the connective tissues in the body. The connective tissue is made up of cells, fibrous material and a protein called collagen. It is the ''glue'' that is responsible for supporting and holding together the structure of the skin, blood vessels, bones and organs. Nothing major.. you know! 

There are 6 types of EDS and depending on what type you have is dependant of which gene is faulty and making the connective tissue weaker. EDS is one of those conditions where it can vary hugely between patients and could be that it is relatively mild in the way it affects the person to completely disabling. In some of the rarer cases severe type it can be life-threatening.

These are the 6 different types of EDS;
CLASSICAL EDS - Although one of the main 3 types of EDS, it is rare and not seen very often at al. It affects the skin more than anything but still comes with a very similar set of symptoms to many of the other types of EDS. 

HYPERMOBILITY EDS - This type of EDS is also known as Type 3 (and is the most common type) and is often thought to be very similar to joint hyper mobility syndrome. Though you still have some skin issues such as bruising easily, there are more problems with the joints and "inside the body" issues which we will go into. 

VASCULAR EDS - Again, although it is one of the main 3 types of EDS, it is rare but is often considered to be the most serious. It affects the blood vessels and internal organs which can cause them to split open and in severe cases lead to life threatening bleeding.

ARTHROCHALASIA EDS - This is a rare type of EDS and its major diagnostic criteria is severe joint hyper mobility with recurrent sub laxations (dislocations) and more to the point hip dislocation.

KYPHOSCOLIOTIC EDS - This is a very rare type of EDS and is a lot to do with the curvature of the spine and weak muscles as well as joint hyper mobility and fragile eyes.

DERMATOSPARAXIS EDS - This also is a rare type of EDS and has similarities to the Classical EDS in that it has a lot to do with the skin. It is severely fragile and can often sag. Hernias are often related to this type of EDS. 

What are the symptoms I hear you screaming (well you might not be, you might just be thinking it but details details)? Symptoms vary between people as well as slightly between the different types here are the general symptoms:

Symptoms
- Easily Bruised
- Increased Joint Range
- Stretchy Skin
- Soft Skin
- Extreme Fatigue (tiredness) 
- Digestive Problems (Gastroparesis is now often being associated with EDS)
- Bowel Problems
- Bladder Problems
- Dizziness/Lightheadedness (PoTs or similar are often associated with EDS patients)
- Organ Problems
- Muscle & Joint Pain
- Fragile Blood Vessels (mainly associated with Vascular EDS)
- Skin Slow To Heal (mainly associated with the 3 main types of EDS)
- Curving of the Spine (mainly associated with Kyphoscoliotic EDS)
- Weak Muscles

Now these don't cover all symptoms and the severity of each symptom can vary from person to person.

Is it just me or can I now hear you shouting how do they diagnose EDS? Just me? Oh well I shall tell you anyways. 

There aren't really any particular tests they can do to diagnose EDS it is more based of symptoms and what the doctor can see. There is a genetic test that can be done for all of the EDS types apart from the Hypermobility type as the problem gene as not yet been identified meaning they can't test for it. Doctors will use this test to confirm a diagnosis that they will make based on symptoms and what they can see. For the hyper mobility type of EDS, the Beighton Score Test is often used. It is a score out of nine where you get points based on the flexibility is certain areas. The different things you get points for are: 

The results of this mixed with other symptoms is how a doctor would diagnose the Hypermobility type of EDS.

There is unfortunately no cure to EDS just ways to manage and control symptoms to make life as easy and as least painful as possible. The most common forms of managing and controlling symptoms are; 
- Medication for pain
- Physiotherapy - to help ease joint pain and to give gentle exercises to strength the muscles to decrease pain but increase the amount you can use the muscles. They often help with supports such as wrist supports, knee supports, finger supports etc..
- Occupational Therapy - to help adapt things at home and in life to make it easier and safer for you. For example if you struggle with lightheadedness, they will help supply hand rails around the house or in the shower or a shower seat to give you that little bit of independence and safety which makes things a little easier to get by.
- Counselling - as with most chronic illness that are with you for life and change your life in big ways, it can often affect the person mentally, so, some people go to counselling sessions to just talk through life and they are helped to come to terms mentally with the condition and any changes they've had to make. Or... well anything they want to discuss with the counsellor that they feel. 
Another way I found that really helps if counselling isn't for you is to journal things. Whether it be a public one or a completely private one, sometimes just writing stuff out and getting it off your chest can really help. Sometimes when you write things out they don't seem as bad or as major as you first thought when you compare it to other things in life people deal with and that. Again, won't help everyone but thought I'd mention it incase counselling isn't for you or didn't work for you - just something you can try from the comfort of your bed or anywhere! 

Why Zebras?
The term "Zebra" is used in reference to a rare disease and condition and is the mascot for EDS and we as sufferers are known as medical zebras. The reason for this is medical students throughout their training are taught 'when you hear the sound of hooves, think horses, not zebras', they are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions (there of course are the odd exceptions - occasionally... very occasionally). BUT, many medical professionals seem to forget that 'zebras' DO exist. It does unfortunately mean getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Sometimes it takes time and can even take 100 doctors before you find the right one for you. Some doctors just refuse to see past the 'normal' black and white textbook but lets be honest.... there is nothing textbook about us EDS lot so sometimes we just gotta wait and find that doctor who doesn't like using his textbook. But, we know our bodies better than anyone... so don't give up! 

Now, I know that I do activities or certain things that I am probably NOT supposed to do due to risks of dislocations or whatever, but my moto in life is "you only live once so do what you want to do, not what you are told you can do". There are things in my life I have had to change and adapt to because of my illnesses but I will never let them beat me. Sure, I have days where it does just get too much and it does beat me but everyone has days like that just to different extremities. And sure, some days I end up in A&E unconscious in resus when my body has just had enough and I can't show my body who is boss.... but then other days I show it who's life it is and that I will do what I want (even though I might not be in such a great way after - sorry mum and dad! :) .). I've learnt over the past 4/5 years since


my health got really bad that no ones life is perfect, everyone has their problems they have to work around. Everyone and their lives are different. There is no 'normal' life. It is what you make it. So even if you are stuck in bed, do something you've always wanted to that requires nothing but a laptop or a book etc. That is how my blog and youtube started... when I was too sick to continue my acting career and too sick to be going out all the time! And now look.... I freaking love doing them and feel amazing when I hear that I have managed to help someone feel less lonely or find the confidence to go to the Dr etc. Life is what we make is so even if you do get diagnosed with EDS or any other Chronic life condition, don't let it stop you... just change you plans to suit your current life styles and situation. Nothing is for certain in life and things always change as do plans. So why see illnesses as any different!? :)  And hey, we are mentally stronger than any of who doesn't have these types of obstacles in life.... living with pain everyday is not just a skill but a superpower!! 

Now, although I do have EDS (as one of my many illnesses), I'm not a trained specialist (even if I do often know more than most doctors), so don't take my word entirely or try diagnose yourself. However, if any of the above does sound very close to home, I hope this has helped you in whatever way it is!

If you or someone you know has EDS, what things do you find that eases symptoms? 
There is also a great UK Charity and website for help and advice so click HERE to go to it! 

If you have any questions or need advice, I am more than happy to answer to the best I can on any of my social media places or in the comments here. I will link below each social media if you would prefer something other than the comments on here. 

For Facebook: Click HERE
For Instagram: Click HERE
For Youtube: Click HERE
For Twitter: Click HERE

That is all for this post, I hope you found it useful whether it be from the sufferers point of view or someone who knows someone with EDS or a parent or just because you were interested in learning (you're awesome). Whatever the reason, I hope you found it helpful and useful. 

So, until next time.

Don't forget to raise awareness and...
Stay Strong
<3

Midodrine Medicine Trial

Hey Everyone,
How are you?

Today I thought I would talk about and kind of document my trial of the drug called Midodrine. I have been diagnosed with Orthostatic Intolerance which is slightly different to PoTs but have very similar symptoms. 

What is Midodrine?
Midodrine is a drug that can be used to treat people with disorders of the autonomic nervous system which include low blood pressure, fainting/lightheadedness and postural tachycardia syndrome. It works by binding onto receptors causing blood vessels to narrow, thereby increasing blood pressure and reducing symptoms ( hopefully :) ). 
Midodrine is not a licensed drug by the FDA for PoTs (or similar conditions) meaning not all GPs will prescribe it and it has to be done by a specialist under supervision. Knowing my GP surgery, they will kick up a stink and won't prescribe it for me so it will probably need to be prescribed through the specialist who recommended it in the first place. 
As far as I am aware, it is used as a last resort when nothing else works.

Midodrine is a short lived medicine but fast acting. So, I take it before I get out of bed and then every 4 hours after that (within the safe dosage quantity obviously) as it then finds its way out your system in that time whilst also doing its job.
I have been fainting far to much recently and feeling lightheaded when I sit up properly or stand up or walk any distance and when I eat. Now, there is nothing to say this medicine will help with any or all of this but the aim is to help control my blood pressure and heart rate better so it is steadier and hopefully in turn stops the headaches that turn into lightheadedness and fainting.

What are the side affects?

Common – tingling and itching, increased blood pressure when lying down, headache, nausea (feeling sick), heartburn, inflammation of the lining of the mouth, flushing, rash, chills, difficulty urinating.

Less common – sleep disturbances, restlessness, agitation, irritability, slowed heart rate, urge to urinate.

Rare – palpitations, rapid heartbeat, abnormal liver blood test.

Possible side effects – abdominal pain, being sick (vomiting), diarrhoea, anxiety, feelings of confusion. But these are pretty much the standard side affects for most medicines.

On the day, they took my blood pressure on arrival and then an hour after taking the first tablet. Because of my Gastroparesis and my stomach not digesting stuff very well, we have to crush the tablet and mix it in a little bit of water and do it that way in order to get the best out of the tablet and ensure it is digested properly (the medicine doesn't come in liquid form unfortunately). They start you on a very low dose of 2.5mg and you can build up dosages and the amount of times you take it in time as long as you don't take more than 30mg a day. So after a consultation with my specialist he and the specialist nurse explain the medicine in depth and more tests I need to go for to try see what is going on in my brain when I have all these bad turns after food but anyway, I then took the first tablet, went away for an hour under my parents supervision and then went back to have my blood pressure re-checked to ensure it hadn't spiked up too high or anything. For once my body behaved and my blood pressure was absolutely fine. Like I said, this is a fast acting medicine and that morning I had had a headache from walking around and I did notice it went away and then came back and kind of came and went for the first hour after or so of taking it. 
After we had the ok from the Dr to leave with my 3 month supply of medicine, my parents took my shopping to try cheer me up and get me out the house as I had been stuck inside in bed for about a week an a half prior. I even got to use daddy's credit card not that the shops were that great to be honest. Now, lets bare in mind, I hadn't been able to walk to the toilet a few days earlier so braving it and walking around the shops was a big deal. By the time we got to the shops about a further hour later (so 2 hours after taking the medicine) my headache and any lightheadedness had gone - coincidence or medicine? We walked around for about an hour and a half before I started feeling headachy and lightheaded again so my I took the next tablet as it had been 4 hours and within about 10/15minutes I was feeling a bit better (other than extremely tired as by this point it had been an extremely long day and was running off a bag of crisps and a chocolate bar). Now, I don't want to say for sure but I would hazard a guess that this was just a coincidence and maybe the medicine is doing something...... result!! 

Then if we move on to today which (when I am writing this) is the day after starting the trial I woke up and sat up. When you have Orthostatic Intolerance, your body doesn't like to sit or stand up straight and this is where my symptoms start in the morning. If you are having a day in bed then you shouldn't take the medicine for the same reason as why you shouldn't take it within 4 hours of going to bed - it increases the chances of your blood pressure going too high. Today is Saturday so it's kind of a lazy day but because I have moved around and stuff I took the first tablet in the morning and again within about 10/15 minutes my headache and lightheadedness had significantly improved. 
One thing I haven't been able to do which has upset me a lot is take my doggie for walks because I just feel too ill walking the distance. So, putting the medicine to the test, my parents and I took the dog for a walk - not a long one but a decent distance that he gets exercise. Normally, I wouldn't get very far before the not feeling good kicks in, today - I got through 75% of the walk before I started getting a headache and not feeling too good. That is a massive improvement and again, I don't want to get too excited too early on as it could also be because my body has had a week's rest from well.. life! However, I am super happy I got to take him and didn't end up feeling totally horrendous!! 
I have also had some Gluten Free Porridge and although I did end up feeling fairly lightheaded after.... I haven't fainted!! Coincidence or just a one off as I occasionally have one off's where I don't faint.... only time will tell. Now although I did feel quite lightheaded after eating a Gluten Free Pizza for dinner, it wasn't anywhere near as bad as usual and it took longer to kick in as well. I also did not faint - just didn't feel that great. Still a major improvement if this is the medicine doing something and if we got the right dosage who knows!
I did put the medicine in a spoonful of yoghurt this morning and then a spoonful of the porridge for the second one and it was much better than the water.... didn't taste as bad haha.

I am going to write another post in a few days or a week and see how things go with time. I also know that after a little bit of time they can increase the dosage and amounts of times I take it if needed, so there is room for increasing it and adapting how I take it a little more to what I personally feel I need which is good.

That's all for this post. I thought I'd document it on here so that firstly I can keep track of how things have been when the Drs ask but also, I know that before I started it I was looking online and asking people if they'd taken it and advice and questions about it and didn't find that much on it so thought it might help anyone who is considering trying it.

If you had tried it, I'd love to know your experience with it!! 

Until next time, 
Stay Strong
<3