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.

My 17th Birthday!

Last Tuesday, the 15th of September just so happened to be 17th birthday! To be honest, it only feels like yesterday since I turned 16-this past year has seriously flown in! So I thought in my next blog post I'd write about what I got up to for my birthday last week. So here it goes.......

Like every weekday morning I got up at around 7:30am (or thereabouts) to open my presents and cards with my family before my Dad went to work and my sister went to school. I was a bit sleepy headed I must admit, I am by far more of a night owl rather than a morning person. However, I received some lovely cards and presents including a Beatles t-shirt, hoodie, purse and lanyard that I'd picked out in Liverpool back in May, jewellery, Cathy Cassidy's Looking-Glass Girl book, a new hat (of course!), chocolates and some money from my family and close family friends which I'm going to put towards purchasing a new camera that I've been saving up for. So a huge thank-you to everyone for their kind gifts of money! I am extremely excited to buy my new camera which I'll be able to use to take photos for my blog, for personal photography and I also hope to experiment with the film features in order to create a YouTube channel. I received some truly lovely gifts and my Mum even managed to find wrapping paper with my all-time favourite fictional character Peter Pan printed on it! How cool was that!? Yes, I get excited about the simplest of things in life!

After Mum and I dropped my sister Laurel off at school that morning, my Grandparents came down to visit with my birthday card/present. I had music tutoring in the afternoon meaning that time would be too tight if we decided to go out for lunch so instead we went out for a birthday breakfast, which was lovely! My music tutor arrived at around 2pm like he does every Tuesday afternoon for my bass lessons. I know not everyone would be too chuffed about having education of any sort on their birthday but I for one was actually quite happy! My music tuition is never something I dread as I enjoy it so much and like I said before I am now learning to play songs rather than learning the basics like I started off with. Now, if I remember right last week I was learning to play the bass line to Band on the Run by Wings which was great! As you all know by now, I am a huge Paul McCartney fan so actually learning to play one of his songs is absolutely amazing! All I'm waiting for now is that all-important phone call from Paul himself inviting me to come perform live on stage with him! One can dream right?!

Anyway, after Mum and I picked my sister Laurel up from school, it was a mad rush back home to make dinner because just a short while later I would be heading out to The Gaiety Theatre to see a Beatles tribute band. For dinner, Mum made me probably one of my very favourite meals; roast chicken, mashed potatoes and vegtables-mmmmm! It makes me seriously hungry even just to think about it!


Me and my birthday cake (please excuse the bad lighting!)

And of course it wouldn't be a real birthday without a cake; or at least not in my world! Ever since I was little I have always had a major obsession with birthday cake. As weird as it may sound to some, I think that there's something really exciting about birthday cake; always have and probably always will! So of course everyone sang Happy Birthday to me, took a few photographs (which I'll try and add to this post in the editing stages), made a wish and then I attempted to blow the candles out but there's always that one that chooses to be difficult and takes a couple of attempts to finally blow out! But we always catch it out in the end!

After blowing out the candles, we soon realised that time was ticking on and that I needed to leave the house soon or I'd be late! So it was kind of rush round the house as I flung everything I needed into my bag, popped on a coat and hat and tied up the laces to my Dr Marten boots. Thankfully, we made it to the Gaiety Theatre in time for 7pm for me to meet my friend Heather. Once we met up, Heather and I went inside out of the cold (typical Scottish weather!). Thankfully, the doors to the actual theatre itself were soon opened meaning that we were able to find our seats in plenty of time before the show began at 7:30pm. It looked like the theatre was almost a full house so fortunately, when Mum and I had booked the just tickets a few weeks earlier there were a couple of seats remaining in the second row which of course we snaffled up meaning that we had a great view of the stage! The show itself was absolutely brilliant! Both Heather and I couldn't get over how a like the gentleman playing John Lennon looked in comparison to the real thing-it was unbelievable! If you closed your eyes, it could easily have been the real band performing right there in front of you. Overall, both Heather and I really enjoyed the show and would definitely go again if they were to come back in future! If you'd like to read more about the Cavern Beatles show click here to be directed to the review link on my music blog.

 

After the show, Mum picked us up and gave Heather a lift back home on route to our house. Heather had surprised me with a lovely card and gift which I opened when I arrived home. I don't know how she managed it but a few weeks ago when we went shopping together and popped into the town's new record shop, I'd been eyeing up a Beatles record and unbeknown to me as I later discovered Heather bought it for me as surprise for my birthday! I was absolutely delighted about that! Thank-you so much Heather! To finish off my special day I tucked into a delicious slice of birthday cake before heading to bed just a short while later.

Before I go I just want to say a huge thank-you to all my friends and family for the lovely cards and kind presents that you kindly gave me for my birthday! I really appreciate it! I also want to say a huge thank-you to everyone for the sweet birthday wishes you sent me across my social media sites; it was so lovely to read them all! Here's to a great year as a 17 year old-I wonder what adventures it'll bring!?

Anyway, I shall love you and leave you all for now!

Sending you love, peace & Best Wishes,

Rob, The Hat Hippie xxx

 

Hello September!

Hello World! 

I thought it was about time I wrote an update for my blog seeing as it's been a few weeks since my last post. During that time the schools here in Scotland have returned following summer break and I believe that the schools down south have also followed suit during the past two weeks. With that being the case, I have been extremely busy throughout the past few weeks and haven't found the time or the inspiration if I'm being honest to sit down and write a new post. It's quite late right now and I'm a little tired however I don't feel ready enough to fall asleep just yet so thought I'd make use of my time to write a quick post for you lovely people!

Like I said above the schools have resumed following summer break and so has my home tutoring. This year I'm going to be focusing on art, music as well as working on the John Muir award which focuses on the natural environment and conservation. I have tutoring five days a week and oh my goodness is it going to take a while to get into the routine of having tutors at random times each day. But we'll get there eventually (I hope!).

As some of you may already know I play bass guitar and have been doing so for the past two years or so. I absolutely love playing bass particularly now that I'm at the stage where I hear a song by my favourite band and am able to pick up my bass and learn to play it almost immediately which is extremely exciting! So I'll be continuing to learn bass for the next year as part of my schooling which I couldn't been any happier about!

 During my art sessions which I only started a few weeks ago, I have already produced a bunch of art work using a range of materials and of course doing a little experimenting with Photoshop as well. Since the new term started I've produced a range of drawings/paintings of natural objects such as shells and flowers and in that short period of time have developed particular love of watercolour and line drawing. So I thought from time to time I might take a few photographs of my artwork and post them up here on my blog and share them with you lovely people as well as keeping track of it for my own future reference.

As we all know it's now September and summer is unfortunately behind us for another year much to my dismay. Without a doubt, autumn and winter are beautiful months for the scenery and the colours in the trees however I am not a fan of the cold weather that goes alongside that. As you'll have read in my previous blog posts I suffer from CRPS (Complex Regional Pain Syndrome) which is affected and aggravated majorly by the cold and damp weather. It's only been September for just a few days and the weather is already reminding us that summer is now over. And with that has come an increase in my pain levels which has not been fun at all! So my trusty companion; my hot water bottle has shown face once again for yet another year. To whoever invented the hot water bottle; I thank you! I seriously don't know what I'd do without one nowadays.

Just as I was saying above we are now in the grand old month of September and despite my moans of September signifying the start of the colder weather, it also has its good points. September is my birth month and on the fifteenth of the month, I turn seventeen years old which is an extremely scary thought! It doesn't feel that long ago since it was my sixteenth last year. My goodness, the past the year has flown in so quickly!

So anyway, I just wanted to share this brief post to keep you all update to with all that's been going on in my life throughout the past couple of weeks. I am now going to edit and publish the post before making a start on another of my future blog posts so do keep an eye out for that; it should be up in the not so distant future! If you haven't already make sure to click here and give my Facebook page a like to keep up to date with all of my latest news!

Sending you all lots of love, peace and best wishes,

Robyn xxx