Living with RSD

My name’s Ailsa, and I’m 17. I’ve sunk really low and need to feel helpful once again, so I hope that my story can inspire others and give people hope, the way those around me have done.

In April 15th, 2005 I had a freak seizure at the school bus stop, and fell. A simple fall. That resulted in me developing CRPS (also known as RSD), in my right ankle. I went through 3 months of not being able to even touch my foot before any doctors diagnosed me. Four years down the track, nothing has improved, and it only seems to be getting worse. The sensitivity of my foot is so bad that I can’t wear a shoe or sock, have my physio touch it, and without my medication I can’t move around. Maybe if that’s where it began and stopped I would be managing better, but isn’t it always the way, that one problem leads to another?

In 2007, we (my doctors, family and I) came to a point that I was on as much medication as they thought a 15 year old should be on, and I was told to just ‘keep working through the pain’ in physio. I did as I was told. And kept my thoughts and feelings to myself. Until I got home, when I would then let loose, berating my body and mind for being so weak. And then, the night of May 7th came around. A perfectly normal evening, until I took myself off to bed. From here on in, I don’t know what happened, apart from the pieces I’ve heard from my parents, and doctors.

That night, I fell into a coma on my bedroom floor, dressed in my pajamas, packing my school bag for the next day. My parents found me hours later when they were going off to bed, and noticed my light was still on. Upon finding me, ambulances were called and I was carted off to hospital for what would turn into a 4 month stay.

Being in a coma is one the scariest things I have ever gone through. At times I was able to hear people, but I couldn’t do a thing. My mum cried by my bed, and I couldn’t comfort her. Doctors discussed my condition, and I couldn’t agree with their observations. It was frustrating as anything, and incredibly scary at the same time. When I finally was discharged, I was the proud owner of destroyed veins from so many drips and injections, and was dealing with the shock of having lost all of hair, due to the medications they put me on to try and fix me. No fixing took place. Unless you count the diagnosing of epilepsy clinical depression, and various other conditions that I can’t say, let alone spell! But none came with an answer. To this day, I have never been told why I fell into a coma. Why I suddenly stopped breathing, and my body shut down on me.

By changing all my medications, I now walk some days without aid, some days with crutches, others in a wheelchair. The majority of people around me don’t even know what I’m going through because the minute they see I’m not in a cast, they think there’s nothing wrong with my foot at all. I have had my entire class at school turn on me, simply because I was no longer ‘normal’ in their eyes. Thankfully, as we’ve grown older, I’ve joined a new group of friends, who don’t mind the frequent hospital visits, or the fact they have to collect school work for me when I’m away.

What I have found amazing is the amount of people who though they appear to like you for who you are, are in fact so superficial. I have learnt the hard way. But I really hope that other people don’t have to go through that because it just adds salt to the wounds that the sick and injured are already tending to.

I’ve been trying to get on with my life for the past year, working with the pain, blocking it out by keeping busy and surrounded by people. I know that at some point I’m going to need to confront some of the things I’ve locked away, but I just don’t feel ready to deal with them. I’m not sure what you who are reading this, have gone through, but at times everything just seems so desperate. I turned to alternate methods of coping, and found one that works well during it, but leaves scars, literally and metaphorically, afterwards. It’s hard, but I’m working through this one with my psychiatrist trying to find something else that can help distract me from the pain, which every day is invading a little bit more of my life.

Two months ago now, I lost my eye sight, and have been left with only a meter of blurred vision, and then it moves into black. I’ve lost my peripheral vision, so I keep banging into walls, and missing doors. My balance is going as well, so my doctors are exploring the reasons behind it at the moment. Currently, their research has found nothing logical. I have had endless blood tests, a MRI CT, lumbar puncture and I’m getting my optic nerves tested in the next week. My lumbar puncture went wrong, and I ended up hospitalized for a week or more, as I lost movement in some of my limbs, and couldn’t eat. All they’ve found so far is I have elevated pressure from my lp, and that they haven’t found any obvious tumors. Now they’re testing me for MS, and waiting on the rest of my results.

Despite this, I have worked hard at school, and have kept all my grades up. I’m doing well, and am apparently amazing my teachers every day. To me, it doesn’t seem that much. You try to keep some normality in your life, don’t you, so you don’t lose yourself among the medicine? Music is the reason for me to work hard and plan for the future. I focus on singing, but I also play piano, tenor saxophone as well as alto, and the harp. I wish to become a Music Therapist when I leave school, so I’m working towards that. I figured I needed a goal that wasn’t centered around my foot, or my medical life, and that gave me something to look forward to. Helping people through music just seems like the perfect career path for me to take!

I’ve given up hope though, of finding out why any of this happened, though. Living in New Zealand doesn’t help, as we have a very limited access to doctors and specialists. My pain doctor, is one of three in the whole country. I’m the youngest patient they have had, with about a 15 year age gap between me and the next youngest. That certainly doesn’t help, either. I’ve appealed to doctor upon doctor at the hospital of all different specialities to try and work out what’s wrong, but they’ve all drawn a blank. So I decided to accept it, until about two weeks ago.

I want to help others deal better with their lot, and I want desperately to be able to talk to others who understand me when I say that I’ve had a bad day with pain. I long to be in the company of people who I can talk to, that can read between the lines allowing me to talk about the things that are hardest. So I came here, on the advice of a friend. What I hope most is that there is someone who is reading this who sees themselves amongst my words, and experiences.

So, if you’ve got this far with my story, thank you for reading it, for each time someone reads my words, a little hope is renewed within me that I’m not alone as I fight this battle. Battles. Keep fighting. Please. For all those you love, and those who love you. And everyone else. Every single person who overcomes the challenges life throws at them, restores others’ faith in humanity. It spreads the mindset, ‘If they can do that, I can do this.’ So keep fighting. I’m rooting for you on the sidelines

xox Ailsa xox