Friday 20 March 2009

2 Year Anniversary of Dealing with This Monster ... RSD!!

Today is the 2nd year Anniversary of me having RSD. It's hard to believe that it has been 2 years to the day that I fell down those steps and sprained my ankle ... sometimes it feels like a life time again whilst on other days, it feels like just yesterday.

It's hard to believe that all of this could be caused just by falling down about 3 steps. All I did was sprain my ankle and ever since that day, I have been dealing with excrutiating pain and horrible Dystonia's caused by the RSD!!

It's been a pretty tough day for me so far. I am in a pretty huge pain flare at the moment and I don't think the added emotions/stresses of having to deal with my Anniversary are helping that much either. Still, i'm trying to focus on the positives though and realise that I have come quite a long way since I developed RSD. I am no where near better and still deal with pain of an 8 and a half on the pain scale on a daily basis, my leg is still extremely rotated and nothing I or anyone else can do has helped it so far, my limbs still turn blue and I am dealing with a suspected spread of the RSD to my left arm BUT in some respects, I have come a long way!!

This time last year, I couldn't walk and was wheelchair bound as my legs would just shoot out in front of me whenever I tried to walk and I would fall to the ground. My mum and dad had to literally carry me everywhere I went and it made simple tasks extremely difficult. I then went onto the Intense Physiotherapy Program in London and the Physio's there learnt me how to walk again. It was extremely tough but without that program, who knows where I would be today! Yes, I still deal with LOTS of pain on a daily basis and I have to use my wheelchair long distances BUT I can get around the house and school now and for that, I am extremely grateful as some people just aren't so lucky!!


I have learnt a lot since developing RSD and I feel it has made me a stronger person. I have dealt with sooo many emotions and tough times and have felt like giving in more times than enough but I am still here and trying to "cope" and live my life to the best of my ability, even though I have lots of limitations.

Have I fully accpeted that I have RSD?? OMG, no way!! I don't think I will ever be able to fully accept that I have RSD but I have learnt to try and get on with life, even though it is extremely hard sometimes when I cant do things that normal teenagers do. I have learnt not to take everything for granted and I am truly grateful for everything that I can do, despite the limitations that may be involved.

So even though today is tough and upsetting for me, I am trying my darn hardest not to focus on the negatives and to focus on the things that I CAN do!

Here's hoping that the next year will see the end of my battle against RSD and that I will be able to live a normal, pain-free live and do all of the things that I want to do!

4 comments:

Anonymous said...

Hi Ali, I know how you feel! Tuesday was one year since I went into the inpatient program and my 2years since having RSD is coming up as well.
We just can't give up hope! I pray that your pain gets better and you are able to anything you want to do in life!

Noveling Neurotic said...

You sound just like me! Check out my blog! October 29th is my "sickaversary" as it's called. This year will be four years. I always hope i'll be in remission, but it's not looking that way...
luck luck luck love love love ♥

Lisa Moon said...

Hey, Alison,
I'm sorry to hear you're flaring right now, especially while dealing with the emotions around your "Injury-versary". I just had my 3 year one, so I can really relate to the emotions that can come up around that!

You surely have come a long way; not just regaining your ability to walk, but as you said, working on being a 'normal' teen, finding a school program and being willing and interested in furthering your education - and even dreaming of helping others with your interest in possible careers!

Those are wonderful reasons to celebrate, even though it's sad to look at the time we've spent with this beast of a disorder/disease.

You're a very strong person and I've no doubts that you're going to keep moving forward towards your future. It's there waiting for you and, if you want it to be, it will be filled with wonderful things you don't want to miss.

Much support as always,

Lisa

Hayley Cafarella said...

Anniversaries are tough! Be it the ones that actually started us down this tangled path or other anniversaries of things we wish we could still be doing...sigh.

your attitude is fabulous though! I will never fully accept this as 'forever' I will keep dealing with the here and now and keep fighting to spread awareness and hoping for a cure...there has to be something better in our futures than this, I truly believe that =D