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 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

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

The Importance Of A Patient Doctor Relationship

Hey Everyone, 

I hope you are all doing good? - I have had a rough old week with 2 hospital admissions via ambulance but that's a whole other story and is going to put into a post but today I felt the urge to write a post about the topic of a Patient-Doctor relationship. I am warning in advance, this is more of a rant than a full on post as I have had a few extremely bad experiences recently.

When you go to any doctor regardless of what it is for, you put your trust into that doctor to be able to help you and treat you correctly. If that trust gets broken for any reason you lose faith in you treatment you are receiving and it makes it a more difficult situation for you and the doctor. 

I recently had an NJ feeding tube put back in (and taken out - not cool) as my health has deteriorated and I faint and have fit like episodes after eating a meal or anything substantial, and until they control that it means I am unable to keep myself going nutritionally. I have had this procedure many times now and unfortunately and have got to know what does and doesn't work well for me personally with all my chronic health conditions. Now, don't get me wrong, doctors know a lot and often will know more than the patient as they've studied it and dealt with it more. However, when it comes to people with chronic illness', they will often know more about the condition and how it effects their body and how certain interventions affect those conditions and not all doctors accept this. 

When there is an understanding and trust between the patient and dr, both sides cooperate in a much calmer and positive way meaning a much higher level of care and treatment is received. Starting an appointment with "I don't really know why you are here" or "what do you want me to do" or " what is 'insert name of condition'" or "to be honest I know best so we are doing it my way or no way" does not make for a good start to an appointment or for a good appointment or relationship with that doctor at all for that matter. I have come across some amazing doctors and specialists over the past few years but have unfortunately also come across many rude and ignorant ones. I've even come across a specialist recently who has refused to see me for being too complex. I mean seriously?! Too complex for a specialist?! 


Now, I appreciate this is a rant and not all doctors are like this for example my pain specialist, I don't have a bad word to say about him and trust in everything he says whether it is something I want to hear or not but this particular doctor I came across when I had my tube fitted recently has just really reminded me how important it is to have that relationship with a doctor be it a GP or a specialist for long term issues - so what do I do.... I rant on here :) 

For a doctor to ask you what your condition is as they'd not heard of it and how it'll affect the procedure they're doing is an instant problem in my head. It instantly makes me lose a little trust and makes me feel less safe in the hands of this person who is about to stick a camera and tube through my body. However, I do also appreciate that no one person can know of every single condition BUT to then tell the patient they are wrong and they're doing it their way because they know best and they aren't happy changing up how they had planned on doing this incase there is an emergency that comes in whilst he is doing the procedure on me does nothing but raise my anxiety levels right up. Not only that, half way through the procedure they tell you that you are too distressed and he won't do I and I will have to come back and get someone else as they don't want to do it is NOT ok in anyway (especially yelling at you). When you get told you should feel sleepy (as requested may I add) and you tell them it hasn't worked and you don't feel sleepy at all and to get yelled at and basically be told you're really not important is going to make you have extremely mixed emotions and is not the ingredients to the procedure or appointments to be good or successful or as stress free as it can be. Basically being told it's their way or the highway as isn't cool. It really leaves a sour taste in your mouth. Sometimes doctors need to learn to accept to work with the patient and their knowledge in their own body as well as their own. A good bed side manner is important.... I get people have bad days but that is just a bit too far. I also know I am not the only person to experience things like this. Turns out the NJ was fitted and had a kink in it so had to be pulled out a couple of days later as I wasn't able to use it... after all that!! 


This is NOT a dig at the NHS like someone had a go at me for. I appreciate the NHS very much and without it I would not have received the care and treatments I have needed. Though, whether it is NHS or private healthcare, you should not be made to feel more anxious, belittled, angered, a burden etc... 
I was also taken into hospital by ambulance recently and the second time I went in because I kept fainting when I stood up or even took a sip of water, the gastroenterologist told us there was nothing wrong and to go home.... he then watched me drink a smoothie and faint and said oh yeah maybe that is an issue. I mean..... seriously, he didn't even check me over, or check anything at all before telling us I was fine and to go home. I am not going to have been taken in by ambulance if there was nothing wrong? I don't see that as a fun evening activity funnily enough - especially after being rushed in 2 days previously unconscious and even taken into resus. Clearly a doctor who just didn't have the care to do any work!! 


It just makes me so mad when bedside manner is forgotten or ignorance is in these doctors who are doctors to help make people better... surely you would care if you have chosen to study for all those years to help people feel better? 

Basically, to get the best out of the patient,treatment, doctor and well everything, it all stems from a good relationship with the doctor and having trust in them.

What are your thoughts/experiences on this matter? 

I'll stop rambling now - it probably doesn't even make sense but like I have said previously, I started this to get things off my chest so that is what I am doing.

That's all for now
Thanks for ready

Stay Strong
<3