The Glare of Birthday Flares Battles The Sun

Dear Audy,

The thrill of being home from hospital quickly disintegrated into despair at pain levels shooting through the roof and aiming for Pluto. The good news is that my jaw has continued to get better, albeit at a slow rate, the bad news is that my hands and feet were not impressed by this and decided to flare just as brightly as they know how. It’s been a confusing couple of weeks trying to get by whilst capable of so little. My hands decided to play up worse than they have for a long time, I have been experiencing fatty fat fat finger syndrome and been unable to do pretty much everything. All the good routines I had gotten into before the last hospital stay in regards to feeding and cleaning up after myself have been lost amongst so many cycles of ‘want to but can’t’. Want to clean the dishes…can’t…want to type…can’t….want to cook…can’t…you get the idea, it can make for really long days!

I’ve been trying to find the happy in the days while waiting out the flare. I’ve been giggling like a nutcase at 30 Rock and managed to finish a particularly thrilling low grade chick novel that was kind of like someone plagiarised Britney Spears’ life story. It was sunshine reading awesome. A sunny Sunday saw me and my prince out in the garden, giving the plants the attention they deserve and making the lawn look more like lawn than jungle. I might mostly watch, but it’s a nice change to watching the walls inside!

20091004 Lawn Mower Fly sml

My online escape time has been limited by swollen fingers and also an inability to concentrate on anything for very long. Normally I’d be consoled by fabulous touch typing on my iphone, however I only have very rare and elusive reception. This has been going on for months now…this here is my strong advice to NOT join Virgin Mobile. Being out of contact during a time when I really needed to be able to call for help did not help my stress levels or my pain, the combination of this with finger pain limiting my internet use made me feel so much more cut off than normal and incredibly helpless. It has been a rocky emotional path and I am still trying to find my footing.

In the middle there somewhere I had a birthday. Another emotional storm. I was in a lot of pain so doing much to enjoy the day was a bit of a dream. In the end I just enjoyed messages from people and when I couldn’t go out to dinner, my prince cooked for me. Including Caf friendly birthday cake! It’s beyond delicious. Along with the pain came all the stress that often accompanies getting older. It’s a reminder that another year has passed in pain, with nothing obvious to show for it. It’s a huge smack in the face of all the things I feel like I should have done, but haven’t with my life. It reminds me of where I thought I’d be at this age, what I thought I’d be doing…these are unhelpful thoughts that I try to avoid but a birthday kind of makes them turbo powered. It took a lot more effort than usual to let the thoughts pass without being broken down by what they said and to focus on the good in my life, the reasons to celebrate reaching a new age. I have just gotten through the hardest 12 months I have ever endured both physically and emotionally. This is a better reason than any to celebrate the milestone, rather than mourn it.

Communication has become something that feels daunting and difficult. I have to focus so much on getting through my days and trying to continue to improve despite flaring that I don’t often have much energy left to be social or relate to much outside of my little bubble. I need the bubble for a while, to try and get the baby steps of a life working properly so that I might actually have something to build on. I will still keep updating as often as I can, but shall keep my internet meandering limited to get through this phase of extra difficulty. I know it will pass, but I need to do a lot of work to make that happen. I miss you too.

Love & Forging A Path Forward,

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  • 2 thoughts on “The Glare of Birthday Flares Battles The Sun

    1. Rob

      Caf you are nuts. I can’t believe just how much you have achieved this year! All I see is someone who is fully committed on getting better, no matter what it takes.

      High fives for first bangs.


    2. Kate

      Hi Caf

      I hear ya on the birthday thing and how it brings up all those “if only” and “I wish” thoughts. I turn 32 next week. My RSD started a week after my 23rd birthday. So it’s consumed pretty much all of my 20’s and now, as time goes on, it’s consuming my 30’s too. I think because my RSD started so close to my birthday, I tend to feel pretty down at this time of year. Instead of thinking about all the great things that have happened in the past year, I dwell on what HASN’T happened, what I wanted to have happen and the frustration that this isn’t how I pictured my life when I looked ahead to my 30’s.

      And in the days before my birthday, I stress out about what my RSD will be like on the day of my birthday. I don’t want to be too sore, stuck on the lounge, awake until 5am. I don’t want to eat my dinner lying on the lounge when the rest of the family are at the dinner table, because I’m too sore to sit on a dining chair. I just don’t want my RSD to even exist on that day so I tell myself that it won’t. Which is just stupid as of course I can’t control that. But I put a lot of pressure on myself to be ok for those 24 hours, then get pissed off on my birthday when I’m not pain free. It all sounds stupid, I know, but it’s the truth.

      The hard thing we have to do is to stop ourselves dwelling on the negative aspects of having another year go by, and on the unreachable expectations we put on ourselves. We need to focus on the important things on our birthdays- friends, family, and the small things that warm our hearts. And celebrate getting through the tough times without being defeated.

      Much love to you, Caf, you’re doing great and you inspire me to keep pushing on. :-) xx

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