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

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