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So I just reread my last blog and obviously I didn't keep to my promise of writing a new blog each week. It's now been around a month since I posted that, and I'm only just sitting down to write this. University has been…demanding to say the least, and it's been wearing me down, so I haven't really had any spoons left to do anything. But as University goes back tomorrow, I know I will be swamped with stress and assignments until June so wanted to get on top of this blog now! So here I am!

I don't have a lot of time to write this before I have dinner and then head to bed, but I wanted to talk about the latest Glee episode. The theme was "acceptance" and each member of the club had to print on a plain white shirt the thing about themselves that they find hard to accept or come to terms with. For me, my shirt would read "CRPS". I decided on that word straight away, and it got me thinking. You'd think after 6 years I would have already accepted the fact that I have this incurable nerve condition and that I'll have to live with this pain for the rest of my life, but the truth is that every morning when I wake up, I have to come to terms with it all over again. My pain threshold has definitely improved since I got CRPS, but emotionally, I still find it hard to accept that everything I had hoped to achieve in my life is now compromised by this condition. I try to tell myself that I'll still be able to do everything I had wanted to - become a music therapist, travel the world, have a family - but lately my pain has been getting in the way of everything, and I'm finding it hard to imagine having a "normal" life ever again.

I'm sure I'm not the only one who struggles with accepting the cards they have been dealt in life. Whether it's getting a condition like CRPS, or losing a close friend or family member, acceptance is something that takes a lot of work and can't been achieved over night. Heck, I've been working on it for years and I've barely made any progress. I don't want this post to sound negative - I mainly want to just let people know that you're not alone. No matter how isolated you feel, there is someone out there who understands. Tonight, I just wanted to crawl up in a ball and disappear, but friends on Facebook reminded me that I'm not alone. We're going through this together.

Dinner's ready so I best go, but I'm going to do my best to write another post in the next couple of weeks. Sorry for being so inconsistent! I find writing here so therapeutic, and although it does get me thinking about some tough things, it ultimately does help. I hope everyone's having a reasonable night, and I'm sending you some gentle, pain free hugs xox

Playlist

The Organ Donor's Heart - Kim Boekbinder

Because The Origami - 8in8

What Sarah Said - Death Cab For Cutie

Unpretty / I Feel Pretty - Lea Michele & Diana Argon

The Story - Sara Ramirez

Tinkerbell - Kim Boekbinder

Not Alone - Darren Criss

Blake Says - Amanda Palmer

Judas - Lady Gaga

Against The Night - Jason Webley

Lack of Spoons = Ugh

I have for the past week told myself that I will write a blog post, and every night I've gotten home exhausted, unable to string two words together. But this ends tonight. Exhaustion, take that!


University just finished it's 3rd week, and since I went back, I've been so tired trying to get to class, not to mention the assignments that they started throwing at us on the first day. So writing my blog has been put on the back burner, but I really miss it and I'm going to try my best to write a post a week. University is tiring for any student, but when you're dealing with chronic pain, it's an achievement to simply get out of bed in the morning, and getting around the Uni campus takes everything out of you.


The best way to explain this is Christine's The Spoon Theory (http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf). For those reading this who don't know it already, it's written by a woman suffering from Lupus (a condition that gives you chronic pain), and it explains how she taught her friend about what it's really like to be sick. Using spoons, she goes through her friend's day, taking away a spoon each time she does an activity like getting showered and dressed, or getting to work, to show the amount of energy simple things take out of someone suffering from chronic pain. Around my house, I will often speak in terms of spoons to explain how I'm feeling and how my day's been, because it's so much easier to say a number, than try to explain how I actually feel.


So basically, every day I get up and get out of bed, I loose a spoon. Getting my bag packed, and getting down my path takes up another. My third spoon goes once I walk from the taxi to my lecture theatre. The effort it takes for me to stay concentrated throughout an hour's class, and take notes when I can, takes away my fourth for the day, and I've only been up for two hours. On a day when I'm more sore than usual, haven't slept, or when my medications are making me extra drowsy, an hour's class can take two or three spoons, which means that by midday, I can only have two spoons to get through the remainder of my day.


After awhile, you do learn how to conserve spoons, doing things like packing your bag or looking out your clothes the day before if you have a leftover spoon for the day, but on the whole, I'm lucky if I can make it to dinner time with enough energy to do my homework before bed. But I manage. Just like anyone else with chronic pain does. It's hard, and yes, most days, I would be much happier to stay in my pajamas all day, resting on the couch. But the way I see it, CRPS has already taken so much away from me, and if I didn't make the effort to get to University, it would take away my chance to see friends, too. People sometimes say to me that they don't know how I do it, or how any of my other friends with chronic pain do it, either. While I didn't choose to get CRPS, and if I could, I'd give it back to the Universe in a blink of an eye, I've got it now and it's not going anywhere. At least going to University gives me a little sense of normality and reminds me of the person I used to be. On some days, I like seeing a glimpse of the person I was before I got CRPS, but there are days when I get upset, thinking about who I could have been, instead of who I am now. I never imagined this was how my life would turn out, and honestly, I haven't even begun to think about how I'm going to live the rest of my life with this constant, annoying, painful companion CRPS, but I think with the support of the CRPS/RSD community, and my family & friends I'll get there. I have no other choice.


Anyway, I'm off to put more antibacterial cream on my new tattoo, and you'll hear from me next week. Promise! I'm putting it into my diary now!


Blog Playlist

• Against The Night - Jason Webley
• Sandy Fishnets - Evelyn Evelyn
• Goodbye Forever Once Again - Jason Webley
• Almost Time To Go - Jason Webley
• Bad Wine & Lemon Cake - Amanda Palmer
• A Brand New Me - Bitter Ruin
• Still - Jason Webley
• Disappear - Jason Webley
• You Only Want Me 'Cause You Want My Sister - Evelyn Evelyn
• Ways To Love - Jason Webley
• Raise Them Higher - Jason Webley
• Have To Drive - Amanda Palmer
• The Ship Song - Amanda Palmer
• Soldier - Bitter Ruin
• Last Song - Jason Webley
• Exit Music (To A Film) - Amanda Palmer

Sleep, or the lack thereof

It's 2:20am here and I'm lying in bed, unable to sleep or even get comfortable. I've always been told that I have to get at least 8 hours of sleep a night if I want to wake up refreshed and ready to face the world. But since getting CRPS, 8 hours of sleep in one night is a luxury that I no longer have. My myoclonic jerk in my leg keeps me awake and when I eventually drift off to sleep, the involuntary twitching wakes me up with the spikes of pain I get after each time it kicks out.


Unfortunately there is no magic button to press that puts you into a deep sleep, although I sure wish there was! Each time I start a new medication, they make me drowsy and offer me a chance to rest, but before long the side effects have worn off and I stay wide awake after taking them. Doctors have told me that if I were to get more sleep then I would be more able to cope with my pain the next day, but what they don't seem to remind themselves is that it's because of this pain that I can't sleep in the first place. It's a horrible vicious circle to be stuck in, and I'm sending out some happy vibes to each and everyone of you who is caught up in this, like I am.


One thing I find that helps when I can't sleep is music. I'm a singer and used to play the tenor saxophone and piano before my CRPS spread into my arm. I have always listened to music to help with my mood, whether that be to calm me down when I'm nervous, cheer me up when I'm sad, or distract me when I'm sore. Below is the playlist I listen to when I can't sleep. For those of you who listen to music also when you're unable to get to sleep, what songs to do you listen to?


My Sleep Playlist

• Viva La Vida Meets Love Story - Jon Schmidt
• Little Tornado - Aimee Mann
• The Obliviation - Alexandre Desplat
• Ampersand - Amanda Palmer
• What Sarah Said - Death Cab For Cutie
• Come Here Boy - Imogen Heap
• Christopher Lydon - The Dresden Dolls
• Staràlfur - Sigur Ròs
• The Point Of It All - Amanda Palmer
• Braille - Regina Spektor
• Falling Or Flying - Grace Potter & The Nocturnals
• Here's My Life - Barlow Girl
• Wave - All Angels Gone
• Sweet Darlin' - She & Him
• The Cure For Pain - Jon Foreman
• Beauty From Pain - Superchick
• Get Through - Mark Joseph
• Sleepyhead - Hera
• Kaleidoscope - Kate Havnevik
• The Chain - Ingrid Michaelson
• Blake Says - Amanda Palmer
• Candlelight - Imogen Heap
• Victor's Piano Solo - Danny Elfman
• I'm In Here - Sia
• Sing - The Dresden Dolls
• Hafid Thennan Dag - Hera
• Remembering Sunday - All Time Low
• Sandy Fishnets - Evelyn Evelyn
• One More Time With Feeling - Regina Spektor
• In My Time Of Need - Opeth
• Wednesday's Child - Vermillion Lies
• Speeding Cars - Imogen Heap
• Have To Drive - Amanda Palmer

A Little History For You

I figured now would be a good time to take a few moments to describe how this part of my life began.


I had finished my first term at high school and was looking forward to enjoying my 2 week break (although  I did have a huge pile of homework to complete for English & French!). However, my holiday began very differently to how I'd imagined it when I had what was later named as a seizure, at the school bus stop. Really smooth, I know. For the next term I was known around school as "that girl who fainted in front of everyone". 


I fell on my ankle and when I came to, I was unable to move my leg so was taken to the hospital to be checked out. X-rays showed that there was nothing broken, but the doctor suggested I use crutches over the weekend to give my ankle a rest. Flash forward to 4 months later, and I was still alternating between crutches and a wheelchair, unable to weight bear, and couldn't even cope with someone touching my foot or calf. Physios were baffled, I was shipped from doctor to doctor and wasn't being given anything to help the agonizing pain I felt every day. I should point out that this isn't an unusual scenario for people who develop CRPS. It still remains a condition that many doctors don't know enough about to diagnose easily. Being only 13 at the time, other doctors didn't think I could have developed CRPS as it usually affects people between the ages of 30-50.


One of the most frustrating parts of finally being diagnosed was that having a name for what was wrong with me didn't offer any solutions, short or long term. I did get put on some pain medications which meant I was able to go back to school part time, though that wasn't without its own difficulties. One of the most memorable instances was when I was first put on Tramadol and without fail 45 minutes after I'd taken it I would fall asleep. It completely freaked out one of my teachers when I fell asleep in Social Studies and wouldn't wake until the bell rang an hour later!


I speak about experiences like that humorously now, but at the time I was humiliated. That combined with the bullying I received for being "different" and "uncool" because of my wheelchair made my first year at high school a much more challenging experience that I'd imagined it would be. Looking back on it now, I'm glad I stuck it out because throughout all of my health problems (and the 4 month spell I spent in hospital when I fell into a coma), I still managed to do well academically and showed people that being physically disabled was very different to being intellectually challenged.


Anyway, 6 years down the track, I'm still struggling with my diagnosis. There are days when I feel in control of my health, and there are days when I wish I had been diagnosed with some well known condition that has a proven treatment plan and cure. But, those weren't the cards I was dealt, so instead I have to work with what I've got. I've moved from doctor to doctor, physio to occupational therapist, psychologist to psychiatrist. The diagnosis hasn't changed, except for the collection of specialists I've met with who don't believe CRPS exists. But I have grown as a person, and have met some amazing people through the CRPS online community.


Something I've always believed, and still do, is that knowledge is power. The more I learn about CRPS, the more I can share with my family, friends & doctors, and the more I can learn from other patients. We pass our knowledge and experiences onto other people and in turn they can share what they know, all in our efforts to raise CRPS awareness internationally, and help put our the fire that is CRPS/RSD.

It's Been A Long Time Coming

I've been meaning to start this blog for a long time but every time I would settle down at the computer to create an account, I couldn't seem to find the energy. But I'm here now, which is all that matters! I don't have a real plan as to what I am going to write in this blog, but as Mark says in Rent, "From here on in, I shoot without a script. See if anything comes of it." I may be writing, instead of making a film, but I feel the concept is the same. I have no specific plans for these posts, but ultimately I want to be documenting my life; which for the last 6 years has been controlled by a severe, incurable chronic pain condition I have called Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD).


I'll get into the details of this condition at a later date, but for now I'll say this: CRPS affects my right leg (from my toes to my hip), left arm and more obscurely, my eyes. The condition makes my affected limbs swell, go scaley, sport the shades of purple, yellow & red, and leaves me in agony all day. The best way to describe the pain I feel is to think of your foot having acid poured onto it, while simultaneously someone stabs you repeatedly in the same spot with a white hot dagger. Sorry for the details, I'll stop there!


One of the hardest parts of living with CRPS is that many people, including doctors, don't believe you when you describe the severity of the pain (and sometimes won't believe you're in pain at all!). Being an invisible illness, it's hard to see with the naked eye that there is in fact anything wrong with you at all. True, some of the symptoms are visible, but they don't look like they are the product of some of the worst pain you could ever feel (McGill University actually says that CRPS is the worst type of pain around!).The frustration I feel when a doctor tells me I'm exaggerating how sore I am or making it up just adds to the pain and makes it that much harder to live with.


The road I've travelled to be sitting here writing this blog hasn't been easy, and I have a long way yet to go. It's been 2,106 days already, but every day I grow that little bit stronger. And from now on, I'll be sharing my experiences here, helping to raise CRPS awareness, one blog at a time.