Are They A True Friend?

Hey Everyone, 

I hope you are all doing fantastically well today. 

Recently someone close to me told me how they were feeling lonely, down and left out with their friends. They told me how they had taken to Tinder to try find a boy so that they didn't feel alone anymore and that they might be able to hang out with their friends again with that boy. Now whilst I don't have anything against Tinder.... I don't believe in having to change yourself or have a boyfriend/girlfriend or do stuff to please others so that you feel more included and get invites to hang out etc..

Over the years we all change as a person... and that is a really good process - and normal. So, with that in mind there is no surprise that we change our friends and the people we want to surround ourselves with because we get on better with them and have the same morals and values etc. It is okay to change friends... just because you met them in school or when you were an itsy bitsy kid doesn't mean you are stuck with them for life. It only takes one person to make you feel less alone in this massive world be it a partner or friend. No matter what is going on in their life, if they care about you and want you in their life they will make time for you. Having a boyfriend or a busy job is no excuse because we as people have a choice to do what we want and see who we want. 

There is a quote that I always see floating around that says 'Anyone can love you when the sun is shining. In the storm is where you find out who truly cares', and it is so true. Friendships/relationships aren't about being there for all the good times in one another's lives, it is about being there when it is not so convenient to be there because things are harder and not so great. We don't lose friends in life... we simply find out who our true friends are. We shouldn't have to change ourselves or hide the hard things in our lives from

them or do things we don't want to do just to feel included or wanted or less alone. We should be able to be ourselves ... because being yourself is the most beautiful thing. If we were all the exact same life would be so boring and we probably wouldn't be all that happy. We are all different and therefore get on better with different people. Being different is awesome and we have to accept that. At school I would think that I needed to be like the 'popular, pretty girl' because I thought that would get me more friends and make me happy. Did it? NOPE..... for the short time I was friendly with that girl, I couldn't be myself because our personalities were so different and the 'friends' that came with that didn't make me feel any less alone... in fact I probably felt more alone because I just didn't fit in with that. We don't need 100 friends or the same friends as we've had for years ... we only need 1 person to feel less alone, accepted and happy. 

In school we have no choice but to be around certain people all day everyday which is why we don't talk to even half the people we used to once we leave. Once we leave school (or anywhere.. work... activities.. anything), we get to choose who we hang out with and we get to see who we genuinely get on well with and more importantly, who GENUINELY wants us in their lives and is there for us no matter what life throws at us. Just because they now have a boyfriend, does that mean they now don't ever want to hang with you because they're with them? Just because they got some new job, does that mean they don't want to know you? No! Change is scary but so rewarding.

So, if you feel alone, go make new BETTER...REAL friends. Be yourself and you'll make friends who love you for you and will bet there no matter what. Real friends can make good days better and bad days less hard and still make you laugh even when you just don't want to. A friend tells you what they think you want to hear, a true friend tells you how it is and then helps make it better. Life is a rollercoaster and no matter how amazing our lives are, we will still experience hard times and we are able to choose who we surround ourselves with to make us happy and help us get through the hard times... they shouldn't be the ones putting us through the hard times though. Don't get me wrong, no relationship is perfect and all has the tough times... but the ones that pull through it and are stronger for it will go so much further. Remember to always communicate with people about how you feel.

Remember, you do you because that is the most beautiful thing ever and by being you, you will find people to surround yourself with that make you feel less alone in this huge world and who will help us through the hard times. Never change yourself or pretend to be someone else to feel accepted. I know it is hard especially with the media these days... but honestly, you will be sooooo much happier.

Have you ever experienced this or know someone who did? Let's support one another and spread some love. Check out my social media and let's all chat and help each other to feel happy and less alone. Lets encourage people to be themselves and no-one else! I also made a video on this so go head over to my Youtube channel if you fancy watching that... or anything else! www.youtube.com/thedramaqueensoph

Have a lovely day and I shall speak to you all 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

What is important in life?

Hey Everyone
How are you all doing?

The last few months have been exceptionally hard for me. My body has really just given up on me and landed me in hospital twice in one weekend by ambulance (even got the sirens going). It has really made me stop and think about what is and isn't important in life and how un-be-lieve-ably lucky I am to have the most amazing and supportive family. So many times recently I have wanted to just give up on life and give up fighting. I have hated on life so much it is unreal. I have even turned round to my parents and said I can't do it anymore. The only reason I have done and still am fighting is for my parents, brother & sister. It sounds so extreme and sounds depressing or weak or harsh to say but it is the truth. I've always said that I am honest on here and use this as a venting place so that is what I am doing.

People always say that if you have a roof over your head and good health then life is good and you're lucky but the truth is having someone or people there for you through thick and thin is better than any physical item. I know that my family are there for me no matter what. We all say things we don't mean to each other and we all yell and call each other names but at the end of the day we love each other. I feel incredibly lucky to have the support system that I do and to have people there for me because if I didn't, I honestly don't know what I would do or what I would fight for in life....

We all love our gadgets and love to spend our money on the newest make up or fashion trend and that's great.. but when push comes to shove, is that new lipstick going to help you through a tough time or help give you advice or the strength you need to push through when you're all out of strength. It really is true when they say money can't buy happiness. You can have all the money in the world but that doesn't mean you are going to get the support you need to get through the things money can't change. Now, I may not be happy currently or even enjoying life, I may do a bit of retail therapy and feel better momentarily but what truly keeps me going is my family. They give me strength when I don't have any left. They give me something that is worth fighting for. The keep me calm when all I feel like I am going to do is go into complete overdrive, panic scream mode!

Sorry if this is upsetting to some, but I want to be honest... for myself and others. I told my parents recently that I wish the ambulance man didn't help me and basically let me die. Quite honestly, it is how I feel lately since my health has really spiralled to a rock bottom I didn't know existed. I've faced some of the hardest things and felt the worst I have before and can't see the ending or white light to this all. I can't see my health ever improving letting me lead my life in a way I wish to do it rather than being stuck in bed. Now, I am saying this because, I always read or hear people talking about how people who kill themselves or don't want to live their life are selfish and it makes me mad. I know when I said that to my parents, I wasn't saying it from a selfish place I was saying it from a place where my head isn't thinking straight and depressed some may say. Both of which isn't a selfish thing. So then, when I think about those people who don't have an amazing family or support system around them, it makes me realise I have more than I think in life to live for and my health is just a big obstacle where adjustments will need making.

I wish I could be there for everyone out there who doesn't have someone... who is dealing with whatever it is they are dealing with alone. I don't know that I'd be able to do it. So, I want to start this post off and have people allow and support and help one another. Show people that they do have someone who is there for them and willing to listen and support them through their tough time be it health, school, work or just life! You are NOT alone. I would love for you to send me messages on Facebook, Twitter, on here or on Youtube and we can start a support group or anyone wherever they are in the world. (might even give you a laugh whilst you're on my youtube :)). Together we can get each other through it.

I feel incredibly lucky and grateful to have my amazing amazing parents and siblings. I may not have good health, or live in the country of my dreams, or have the job I always dreamed of as a little girl.... but I have them and I love them so much and would do anything for them - even if that means fighting for a life that right now I am not so keen on... but who knows - the future hasn't been written yet and what we do today creates tomorrow and the rest of our lives.

Sorry for the rambley post and sorry there isn't even all that much structure, I just felt the need to vent and remind myself how freaking lucky I am to have what I have. In sickness and in health..... that applies for marriages, friendships, when you have kids.... anything...
And if someone can't or won't take you when you are at your worst or when you are sick.... they sure as hell don't deserve to be around when you are happy or doing well!! Support works all ways and can be the most powerful thing in life... even more so than any medication.

Lets support each other.... and together we shall conquer the world!!

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