Chronic Pain Awareness

Hi Guys!

Wow! I can't quite believe this is my 100th post; a very short one at that but I just wanted to stop by to share this video. I'm so sorry for being so quiet of late, my pain has been playing up big time. As a result I haven't been feeling very inspired to blog. I will however, hopefully have some new posts coming up in the not so distant future so please bear with me.
In the meantime I want to share with you all my most recent YouTube video where I talk about what it's like to live with Chronic Pain. My aim is to raise as much awareness as possible so I'd be extremely grateful if you could help me out and give this video a share and ask others to do the same. The more people that see it, the more chance there is that it'll reach someone out there in a similar situation.

Anyway, on that note I shall love you and leave you to watch the video. If you have any questions please feel free to get in contact.

Thank-you all so much for your love and support!

Love & Peace,

The Hat Hippie xx

Hospitals & A Bad CRPS Flare

Hello!

It's been an eventful few weeks since I last posted here on my blog and you may have noticed that I mentioned on my Facebook page that my knee has been playing up lately, causing me quite a bit of pain and discomfort. Despite giving it plenty of rest and keeping it elevated as much as I possibly could, it didn't seem to improve any. In fact, it probably got worse if anything.

So after feeling pretty miserable all weekend it was off to the doctors surgery on the Monday morning to see my GP. We are pretty fortunate when it comes to our doctors surgery as they'll always do their best to fit you in as soon as they possibly can and last Monday was no exception. They managed to fit me in that morning roughly just an hour and a half after Mum called that morning. That's almost unheard of in today's society!

So after a shorter than usual tutoring session that morning, my Mum and I made our way across town to the surgery listening to the radio as we went.  Listening to the radio is by far one of my favourite past times and is great when going to a medical appointment as it helps divert my mind from worrying about it. After attending so many hospital appointments throughout the years, you'd think it wouldn't bother me too much, but for whatever reason I still get quite worked up about going for one.

Anyway, we arrived in the surgery car park just as they were playing the new ELO song which actually reminded me a little of another song. We were a little early so we sat in the car for a further ten minutes or so, which was much better than sitting in a waiting room, whilst I sat there deliberating what song it reminded me of. Then it hit me! It sounded like Golden Slumbers by The Beatles (my favourite band-in case you didn't know!) I quickly pulled out my iPod and started playing Golden Slumbers to compare the two songs. My poor Mum must get sick and tired of me having mad, geeky moments about music-she has the patience of a saint to listen to me rambling on all day long! But in all seriousness, go look up the two songs and have a listen! I mean it might just be me, but that's exactly what it reminded me of. Oops, I've just realised that I went off track enthusing about music (again!) Sorry folks!

Inside the surgery we spent a further twenty minutes or so waiting to be seen as it was extremely busy and they were running a little late. There really wasn't a need to complain though, as these things happen and they were good enough to actually fit me in at the last minute. After twenty minutes of watching I don't know how many different faces come and go and for me, counting the faded outlines of squares on the carpet (the things you do to past time), my name was finally called.

After explaining to the doctor what was going on with my knee, he gave it an examination, asking me questions about my most recent visit to hospital and what motions they used when examining my knee as that was really when my knee began flaring up. Apparently, the motion they used in hospital, which almost looked like they were popping my knee out of place and back in again, was actually to test the ligaments that had been created during my knee surgery back in 2011. I was told to rest my leg just like I had been doing and was prescribed yet more pain killers.

By Wednesday, my pain levels had grown worse and I spent the day in bed and for a little while in the afternoon curled up on the sofa feeling absolutely miserable. This was probably the worse my pain had been for a while. It was at the point that it had me in tears so that said a lot. My Mum decided to get in contact with the hospital and managed to get in contact with my pain management consultant's secretary who arranged for me to see both my pain management consultant and my othopedic consultant the following day which we were so grateful for them arranging.

So the next morning it was a 6:30am rise for us in order to get there in time. Quickly, we ate a spot of breakfast, got dressed and were out of the door before we knew it. On route to hospital, we picked up my Grandparents and hit the motorway in the morning rush. Fortunately, we managed to make it in time for my appointment.

After finding out where exactly to go for my appointment, (no one seems to know where exactly anything is in the new hospital) we were then told by a receptionist that my consultants had been called to theatre and they had no idea how long they'd be. Mum and I decided that we'd go get a coffee from the hospital coffee shop when we bumped into my orthopedic consultant on route. It turns out that he hadn't been called to theatre afterall, so we followed him to the plaster room where he had a look at my knee and decided to send me for an X-ray. It had been a good two or three years since I last had one actually. We were sent through what was like a secret corridor which led to X-ray department and let the receptionist know that I was there. After a fairly short wait, I was escorted through to the X-Ray room by a student radiographer who said that I'd been the most stylish person to step through their doors that week if not ever. Yes, even on a hospital visit, I still manage to wear one of my hats and a pair of Dr Marten boots because let's face it; it just wouldn't be me without them! But anyway, it was a nice compliment!

The radiographers who  took care of me that day were extremely lovely which makes a  huge difference! Some of my last X-rays were taken at an adult's hospitals and they barely uttered a single word to me and didn't even bothered to crack a smile-is it really that much to ask?! I mean, I was only about 13 or 14 at the time!

After being made to bend my knee in a variety of awkward positions, standing as still as I possibly could, the radiographers were satisfied with the images and sent me back through to the plaster room to find my pain management consultant dressed in his blue theatre gowns. He had to take a quick phone call, so my orthopedic consultant had a look at my X-Rays which thankfully looked normal. Although when it comes to my leg "normal"  is completely different to the average person's leg.

The long and the short of it was that last time I saw my consultant, which was around a month or so ago, whilst he was examining my knee, my fibula may have knocked against one of my nerves and upset things after it being moved around as much. There isn't much holding my knee together meaning that everything is kind of floating around, hence why my fibula could have hit against one of the nerves. There's isn't anything that they can really do to fix this so he suggested that I keep my leg well rested and that I wear a splint as much as I can over the next few weeks to keep things secure. So as one of his fellows ordered the splint, he popped out to go collect it.

During this time, my pain management consultant returned and asked me about what had happened over the past few weeks with my knee. I explained the situation to him and he also suggested me wearing splint on my knee. So everyone had a wee laugh about how two great minds think alike when my other consultant returned. I had to sit on one of the hospital beds as they fitted the splint which is extremely heavy and makes me feel like a robot, but I'll ride the storm and put up with it in hope that it'll help. Since I was there my pain management consultant also gave me a course of acupuncture in hope that it would help with my pain. Obviously, I wasn't able to see what he was doing as I had to lie on my side, but apparently my consultant used a lot more needles than he'd previously used when I had acupuncture.

So I was eventually sent home to rest my knee and to try out the knee splint for the next few weeks. I am most definitely not a fan of it as it's so heavy, however Ive got to do what I've got to do.

Anyway, I shall go for now but until next time I send you all lots of love and best wishes!

-The Hat Hippie xx

My Advice to CRPS Sufferers

Today, I thought I'd share my advice for other people out there who, like me suffer from CRPS (Complex Regional Pain Syndrome). As you probably know already from reading my previous posts, I've suffered from this condition since undergoing knee pioneering surgery back in 2011 and was finally diagnosed with the condition in early 2013 by which point it was too late to actually attempt to cure the condition. 

I was just 12 years old when I had my knee surgery and at just 14 years old  I was diagnosed with CRPS (Complex Regional Pain Syndrome) so I guess I was pretty young and I still am in many respects. As I write this I sit cuddled up on my bed with my hot water bottle on my knee due to my pain flaring. Not much fun! This got me thinking and I thought I'd write my advice for other people in similar situations to myself. There is very little information out there for CRPS suffers particularly by people who suffer from it themselves and by someone of my age. So I thought I'd share the little knowledge I have and I'm sure there's plenty more for even me to learn over time. I am no expert! I don't think anyone really is to be completely honest which leads me onto my first piece of advice.

1. Don't be afraid to be honest with your consultants as no one knows you better than you! Whilst doctors, consultants and specialists are counted as "professionals" even they don't always know what the perfect cure or solution is for you. CRPS or even chronic pain in general is something that needs to be investigated in a lot more detail than it already has. I personally, under hospital guidance havd tried numerous treatments such as using a TENs machine, anti-epileptic medications which have apparently shown effective results in people suffering from nerve pain and even acupuncture. Some of which have helped to some degree but alongside any relief that I did experience came other problems. I still haven't found a solution and instead have to manage my pain levels to the best of my ability. People in the medical profession are just human and are still learning just like you and I so don't be afraid to let them know that something isn't working for you or if you don't want to go through with a treatment because "the doctor knows best and I can't question them". Don't worry, you can because ultimately they're not the one going through everything that you are. And let's face it; no one knows you better than you!

2. Never give up hope! You never know what tomorrow might bring, it might just be the day they find a cure or a way to relieve your pain levels! New cures and treatments are being discovered each and everyday for a large number of things. Tomorrow might just be the day that they'll find the one to change your life!

3. Play close attention to what triggers or increases your pain flares and look at ways in which you can minimize these triggers or perhaps get rid of them altogether. For me things such as stress and upset play a big part in triggering off a pain flare so over time I've had to step back and take a look at what I can do in order to prevent myself from becoming stressed, anxious or upset to avoid my pain levels becoming any worse than they are. Another personal pain trigger is cold and damp weather which living in Scotland is pretty difficult to avoid I must admit. It's actually something that I'm currently struggling with quite a bit due to the fact it's approaching the colder months in the year. And I'm currently having to use techniques and coping mechanisms that I've learnt over the past couple of years such as carrying a hot water bottle wherever I go and the simplest of things such as wearing warmer clothes, resting my leg and using art and music to take my mind off of it. It doesn't take the pain away, but it certainly helps me to cope with it and prevent it from getting any worse. There will be many different ways of dealing with pain triggers and not everything will work for you, but my advice is to try things out and over time you'll discover what works for you.

4. Don't be afraid to say no and make people aware of your capabilities! Perhaps you may have heard of the spoon theory and for those of you who haven't, I suggest looking it up! It explains the daily capabilities of a chronic pain sufferer perfectly. Pain is such a debilitating thing and sometime makes enduring the simplest of tasks a real challenge. You're only human and can only do what you can do! It doesn't make you a failure to say 'no, I can't manage to do that today'. Sometimes people won't always be as supportive or as understanding as you'd hoped they would be but, you know what?! It could easily be them in your situation and they don't know what might happen tomorrow so always be proud of yourself for what you can do because you're doing good! It's the scenario of whether the glass is half empty or half full and sometimes the most difficult of situations bring you to facing that scenario face on. And trust me, it hasn't always been easy to be positive in past, but I can finally say I think i've finally got there!

5. Never compare yourself to what you once were or even the people round about you. This isn't an easy thing to do, I must confess, it's something I'm still learning not to do. It's so easy to look back at a time when you didn't suffer from CRPS and feel absolutely crap that you can't live the life that you once used to lead and do things that you once used to do. Always, focus on the positives, be proud of what you CAN do and the person that you've become because of all that life has thrown in your direction.

Radio Update

Hello Lovely People!

How are you all doing? Just as I promised you in my previous post here is an update to tell you all about everything that's been happening regarding my exciting radio opportunity. I can't quite believe that I'm actually able to say that I'm going to have my very own radio show! For me, its an absolute dream come true!
Since my last post I've visited the station for a look around and got to meet with the station manager, Louis. Following that I have visited the station a further three times for training.
On my first training session I was asked to come in a hour before the other trainees who had already taken part in training the week before. In that first hour I was shown the equipment and how to use it. There is so much to remember; I mean there are four different microphones, one for me the presenter and the other three for any guests you may have in the studio. There is also a CD player which has the capacity to take two different CDs at a time, a vinyl record player and a computer which has a library filled with thousands of songs, jingles and advertisements. All of the equipment is connected to the mixing desk which the presenter has full control over. Initially, there was so much to take in but after a few goes I feel like I'm definitely getting the hang of things! After being shown how to use everything, the other two trainees arrived and we were each given a chance to use the system and experiment a little. Afterwards, I had my photograph taken for my ID badge that I will have to wear when I'm in the station.
Last Friday, I had another visit to the station where I was allowed to use their portable system (I couldn't use the main one as the station was on air). I spent around an hour and a half working with the technology and practicing the skills I had picked up during my previous visit. I played some of my favourite songs and experimented using the jingles/advertisements whilst trying not to leave a silent gap in between. It's tricky and will require a lot of precision when it comes to timing but one thing I know for sure is that the more I do it, the better I'll become!
Yesterday (Sunday) I was given the chance to create my own mock radio show for an hour which I must admit I was extremely nervous about doing. It's extremely weird sitting their chatting to yourself and it's even weirder to think that in the not so distant future people will actually be listening to me whilst driving their cars or streaming from the comfort of their own home using the internet. I know for a fact though that as time goes on, it'll soon become second nature to me!
I decided to start off my first mock radio show presenting and talking about the music I'd chosen to play. Talking about something that I'm passionate about most definitely helped me with my confidence during my first attempt at a show. Had I chosen to talk about something else I think my mind would have went blank which would be rather embarrassing! Next time I do however plan to use newspaper clippings as well as magazine articles and read them out to help me get used to presenting. Overall, I was extremely delighted with my first attempt and cannot wait until I can do it for real live on air!
My task is to now come up with a concept, talking points and a name for my show which is really wracking my brains. My aim is to think of something unique and exciting that people will really enjoy listening to. So if any of my lovely readers happen to have some ideas that you think I might be interested in using, please let me know! Any ideas will be greatly appreciated!

Until next time,

Robyn x

Music Blog: www.jukeboxrhapsody.blogspot.co.uk
Facebook: www.facebook.com/thehathippieblog
Twitter: www.twitter.com/thehathippie

Let's Make A Difference!

If you know me personally or have read any of my pervious posts you'll be aware that I was born with a physical disability and suffer from a condition named Complex Regional Pain Syndrome which affects my life drastically. Being born with a disability fortunately meant that I never had to go through adjusting to a new way of life using a wheelchair. I grew up with my disability and never thought of it is as something weird, I always saw myself as me and didn't really care what anyone else thought.
Initially, when I first went to primary school I was treated differently because of my disability alongside the fact that I had to use a wheelchair to help me get around. I despised going to school, I absolutely hated it! I was a quiet, mousy type of girl back then and just quietly went about my business despite how much I hated going to school.
Life completely changed for me when my family and I moved to another town. Both my sister and I were enrolled in a small rural school in the middle of the countryside. If we looked out one window we could see endless fields of green and usually a herd of cows grazing in the grass. Looking out another window we could see the sea far into the horizon. It was simply stunning.
With around thirty-six pupils at any given time, I felt completely normal there. Everyone excepted me for who I was and never made me feel different because of my disability. It felt like being a part of a big family and that most definitely was what I needed. Attending a small, rural school completely changed me as a person. I found my confidence and made so many wonderful friends. I am truly grateful to all of my friends there for accepting me and giving me the chance to feel normal.
Unfortunately, I'm too old to attend primary school and instead I'm now home tutored and find myself in my final few years of secondary school. In recent years I've been let down ALOT by people who I thought would always be there for me. If I'm being completely honest it really hurt and I felt extremely let down. Since my knee surgery in 2011, I've had a lot of ups and downs which has helped me mature and become the person that I am today. It's been really difficult at times but I've managed to get through it. I'm fully aware that the doctors are no longer able to do anything for my condition, with that in mind I have decided do my upmost to enjoy life as much as I possibly can and achieve all of my dreams and ambitions.
My intentions for writing this post and on a much bigger scale, creating this entire blog is to open people's eyes and help change things for the better. I'm sick and tired of everyone being classed as the same! I'm sorry, but we're not all the same!  Each and everyone of us are unique and I don't care what anyone says, we should feel genuinely proud of who we are!
Like I said above, I have lived with a physical disability ever since I was born. But what I'm trying to get across to the world is that I am a person with real thoughts and real feelings; I am not the disability!
A few years ago I made the decision to take a firm stance and decided to truly express myself and dress in my own, unique and sometimes crazy style. I'm different anyway, so when people stare at me whilst I'm using my wheelchair, why not give them something else to stare at other than the piece of metal that follows me everywhere I go?
There have been a few professionals that I've come across of late who don't seem to accept the word "no". Yes, they have a job to do and I completely accept part of that is to provide me with information regarding what exactly I'm entitled to. However, I'm no longer a child and I am more than capable of making my own decisions that affect my own life! This means that if I say "no", particularly when I have good reasoning to back up my decision the professionals shouldn't persist with the subject and attempt to make me change my mind. I have had many conversations with my GP, who has always encouraged me to speak up and to make sure the professionals around me listen to my wants and wishes. I sometimes think they forget my age and forget the fact that I know my own mind-set and that I'm entitled to my own opinion.
With this in mind I've decided that rather than sitting back and doing nothing I really want to change things. If I have both the ability and knowledge that is required to make a difference, then I should do my bit to get the ball rolling. We need to work at changing people's outlooks and make the professionals around us listen. In order to get things right for each and everyone of us we need to be included in making decisions that affect us because no one knows us better than ourselves.
Unfortunately, I can't wave a magic wand and everything will be okay but what I can do is begin to set the foundation for change. I have created a twitter account for this blog and also plan on setting up a facebook page which I shall share on this blog as soon as it's up and running. Through my social media accounts I want to support other young people out there whether they have a disability, going through a hard time in their life or feel passionate about individuality. I completely understand how hard life can be sometimes and hate to think that there are young people out there who feel that they can't talk to anyone. So if anyone ever needs someone to talk to or needs some advice please do not hesitate to contact me through one of my social media platforms or via my blog's email address which can be found on my contact page.
Im pretty sure that there are so many people out there that can relate to this post and share the same thoughts and feelings as me. I hope that together we can make a change so that no one feels alone or that they're not listened to by the people who are supposed to be there to help and support us.

What is it Like to Suffer Complex Regional Pain Syndrome?

Almost an exact year to date, after months of enduring countless medical appointments with no answers I was finally diagnosed with a condition named Complex Regional Pain Syndrome. The condition stemmed from pioneering knee surgery that I had in 2011. As Complex Regional Pain Syndrome isn't a widely recognised condition (I had never heard of it until I was diagnosed last year) I thought I'd write about what it's like to live with the condition.

Having Complex Regional Pain Syndrome means that basically I suffer constant pain in the affected areas of my body. From what I've heard CRPS can be caused by a whole host of things, mine has stemmed from the knee surgery I had back in 2011 but we cannot pinpoint the exact reason why I suffer from it. Due to the personal experiences I've had whilst suffering from the condition I have noticed that my pain flares are triggered by things such as emotion, stress and even cold weather.

It's difficult to describe what exactly the pain feels like; I haven't ever experienced pain like it before. The only way I could begin to describe it is that the pain feels like burning but I must emphasize that it's much more intense than "just burning". I mean this is the kind of pain that keeps you awake at night, it makes you feel sick and downright miserable.

I also experience pain in my hand and foot as over a period of time it has spread from my knee to other parts of my body. When the pain flares in my foot my heel turns a bright shade of red and stings whenever it touches or rubs against anything. It reminds me of having a carpet burn but on a much worse scale. On some occasions it swells making it both difficult and uncomfortable to wear a shoe on my right foot.

Apart from experiencing gruelling and debilitating pain I suffer a number of other symptoms that go alongside CRPS. My hand for example is extremely painful whenever I attempt to use it, particularly when it involves fine motor activity. Whenever I use my hand to do something or if I feel stressed, upset or even excited it goes into an uncontrollable tremor which is not much fun at all! I usually wear a splint in order to support my hand, keep it steady and minimise the tremor.

Complex Regional Pain Syndrome also affects my nails. I've experienced that the growth in my nails takes much longer than it used to they have also cracked for no apparent reason. When reading about CRPS it's apparent that nails are often affected leaving sufferers experiencing similar problems to the ones I have. My sleeping patterns are also affected drastically by the pain. It takes me forever to fall asleep at night due, meaning that I spend the following day yawning and feeling pretty tired.

I have quite a large scar spanning from just underneath my knee and doesn't stop till half way up my thigh (it's a similar shape to Harry Potter's lightning bolt scar except bigger) the skin round my scar feels numb but at the same time feels extremely sensitive as does the rest of my leg. I hate when anything rubs against both my knee and foot as it makes me jump due to it's sensitivity.

There has been times (mostly in the winter months) when my pain has gotten so bad that I had to go and lie in my bed for hours on end in complete darkness. I felt very sick at times and didn't feel much like eating which also caused problems because when I don't eat I cannot take pain relief to help ease the pain in the first place. Those winter's days were like nightmares! Whilst everyone is excited for winter hoping that it might snow I spend my time dreading it as I know the cold weather makes me feel so miserable! I know that if I decided to venture out into the snow that I should prepare to spend the following day in bed.

At the current moment there doesn't seem to be an exact cure for CRPS, I rely on coping mechanisms in order to manage my pain. Throughout the past few years I've spent a lot of time going back and forth to countless hospital appointments not just looking for answers but to also attend pain management clinics. At pain management clinics my consultant looked at a range of different treatments to help ease my pain. Some have had better results than others but for various reasons I felt that they weren't the right treatments for me due to side effects that went hand in hand with them. Using coping mechanisms and taking basic pain reliefs is the best way that I can manage my pain at this moment in time.

As much as my health frustrates me I always try to remain positive despite how difficult that can be. Hopefully some of what I write here on this blog will reach someone out there going through similar experiences to me. I think I  mentioned previously that there isn't a lot out there for people like myself. There are articles on the internet written by experts about my condition and others similar but there isn't much material written from the point of view of a person who lives with it everyday. Yes, a piece written by a professional is great; it's informative, looks at the facts, research and statistics that have been compiled together. I however, want to compose writing that is both relatable and appealing to someone of my age group.

Welcome to My Blog "The Hat Hippie"!

Hi there!

 My name is Robyn, I am sixteen years old and I wish you all a warm welcome to my blog "The Hat Hippie". It has taken a lot of deliberation to decide on the perfect name for my blog and I think I eventually have decided upon one. I wanted the name of my blog to depict me as a person and I feel that "The Hat Hippie" is the perfect candidate.

 As a teenager who has a physical disability and suffers from a condition name Complex Regional Pain Syndrome, I depend on my wheelchair to help me get around. Being a wheelchair user, I have noticed that people who don't really know me tend to treat me differently. Often people would stop and speak to whoever was with me asking my companion how I am doing etc. However it has always been frustrating when they do this as they speak as if I am invisible and not right in front of them. As strange as it sound I have used clothes and accessories as a way to help overcome this.

 I absolutely love clothes that are vintage, inspired by retro clothing or are very unusual. I am also inspired by the bohemian/hippie style and often incorporate this within my outfits. The real talking point for people when I wear one of my growing hat collection and of course I can't forget a pair of my trusty Dr Martens. Ever since I started wearing these a few years ago I've lost count on how many times that I have been stopped by people to admire either my boots or my hats. It has been unbelievable!

 Dr Martens seem to bring a lot of happy memories to the people I've spoken with over the years. I recall being in an elevator and the lady across from me smiling as she began to recall how she wore her Dr Martens when she passed her driving test. My absolute favourite was when we were popping into our local Sainsbury's store and an older man approached me and began reminisce about his younger days as punk and wearing a pair of the original Dr Martens prior to the range of many colours that they sell now. It is so lovely to see how something like that can brighten someone's day and I really enjoy hearing people's memories!

 With this in mind I began to brainstorm a few ideas for my blog, wondering what firstly, I should name it and what exactly I should also write about. I had a couple of names to choose from which I researched as I didn't want to pick a name that someone has already chosen. Eventually, I decided upon The Hat Hippie and here I am today writing this post.

 I had a rough idea on a topic to cover on my blog and have concluded that within this blog I shall write about my life as a teenager with a physical disability and Complex Regional Pain Syndrome. The topic will help me keep my posts varied as there is so much to write about the experiences I've had over the years and of course the ones that are still to come.This will allow me to hopefully give a detailed insight into the positives and negatives of what I've been through, teach and give advice to others on how to help someone in a similar situation to myself and of course I would love to give others like me something to relate to.

 As someone who loves to write and dreams of have my writing published as a book one day, I feel that this will be a great way to learn and improve on my writing skills to enable myself to achieve my aspirations. My aim is to post something at least once a week. There might on some occasions be two depending on personal commitments.

 I must go for now however, I shall have new blog posts to share with you very soon! So please do pop back again in the near future!

Best Wishes to you all!

Robyn x