I am finally feeling free of a flare that lasted four days and took another to abate back to a level of normal pain. It was a little scary, my pain flares are always ridiculous but this one was even more so than normal. It was all I could do to get from my bed to the couch! Thank goodness I am finally feeling better. I shall try and get moving today as I think it’s important to get as much movement in as I can without setting off another flare…it’s a fine line that even Philippe Petit would struggle to walk.
A couple of weeks ago I invited RSDers to share their stories of positivity in a facebook forum. It’s hard for ‘normal’ people to understand that sometimes just doing the dishes or a load of laundry is a huge achievement for us as there are so many days when we can’t even do that. The stories and support that have been flooding through this forum has brought a smile to my face on days when the pain was doing its best to wrench even that from me. A few days ago I wrote an entry that I would like to share with you, Audy, just as an example of how a normal night out can seem overwhelming from the perspective of an RSD sufferer.
On April 16th I went to see an act (Lawrence Leung) at the Melbourne comedy festival. This is an annual event and from the age of about 18 I used to go and see heaps of shows each year, they are held in buildings all over the city, some are small, hard to get to and often are temporary (hard) plastic seating. I have been avoiding it for the last couple of years. I felt like I couldn’t even relax enough to be able to laugh at a comedian because of all the hassle of getting in and out of anywhere on crutches. My condition has worsened and I’ve had to use the wheelchair more and more. For this show, when I saw my friends organising to go I decided to jump in and join them. I always feel a little bit of guilt because I know they will have to pick me up and then push me (with full body RSD it’s hard to push myself far). I rang the venue in advance and organised disabled parking and when we arrived there was a little confusion with the parking but then an amazingly organised woman came and showed us through the secret back entrances and my friend was able to pick up my ticket and we were ready for the show on time. I hurt my hip getting out of the car and during the show it started to flare but I quickly downed some pills and adjusted and tried to keep my mind in the show and not on the pain. It worked, I managed to laugh! I even managed to stay for a glass of wine with my friends afterward and not feel like I was being a burden just by being in my chair. It wasn’t a huge night out by normal standards, but it was a huge thing for me just to go and try…yes, it was more awkward than if I was able bodied but still possible! Every year the festival had been making me depressed about what I was missing…whilst it’ll never be the same as it was when I was younger and could fit in 3 shows in one night, I don’t think I’ll get so down next year, just more organised.
In other good news, a friend, Heather, in the US has recently undergone a ketamine infusion and had wonderful success. The procedure is different to how mine was conducted in Australia, the drug is administered over a few hours rather than a week. It gives me so much hope to see someone relieved of the horrible pain of RSD and I wish Heather all the best for her future infusions, hopefully the beast will eventually sink into submission. Please check out Heather’s Video and you can tune in for updates at her new blog, A Day in the Life – my life story about RSD.
Another RSD sufferer, Christa, has uploaded a new video explaining how RSD has affected her and completely changed her life. Please watch, Christa’s story is so similar to what many of us go through. Christa also writes a blog, Kissa da Fighting Fish.
I am so happy to see the increasing numbers of RSDers who are willing to share their stories to fight for awareness about our condition. We are just people, we are not scientists or doctors, all we have to share is how the condition affects our lives and hope that science will hear us.
Love & Giggles,