Oh, I am very sore. I am very sore, indeed. I miss being able to sit up, it’s ever so hard to concentrate on anything interesting when I am too sore to even sit on the couch. My TV is in that room. I am alternating between laying down on cushions and sitting slightly propped up out there so that I can watch some entertaining stuffs like Gossip Girl and Glee. My reading brain is shutting off on me, the bright and noisy pictures seem to distract me more effectively at the moment. It can be really hard to concentrate when dealing with so much physical pain, my brain is so clogged up with pain signals that the thought signals tend to have more trouble getting through. I have read one fabulous book recently and I shall post a review for you as soon as I have functioning thoughts enough to do so!
I was going to sit and wander through the blogs that I have been missing in recent weeks, however having the laptop on my lap just long enough to post this is apparently enough laptopping. Concentrating is making my hurts hurt more. Stupid pelvis. I am so darn tired of it causing so much pain and incapacitation. Especially when the sun is shining happily outside! I would like to go and frolic in it. Oh yes, I would like that very much.
Yeah, you know how it goes, my hands get sore and then I talk to the camera.
A general CRPS and health update from the past few months, along with some pondering about the pain/anxiety cycle and the way in which Feldenkrais has helped me in overcoming a lot of my physical limitations.
Gosh darn it’s weird watching myself, talk about myself. Kind of like walking in on myself naked. Can I please have a cupcake now?
Very sore hands. Very, very sore hands. Trying not to stay in the trance of thinking about my very sore hands…so I recorded a talkie about the good things that have been happening lately.
Whenever I feel depressed, I also feel a little bit guilty. There is a difference between sadness and depression. When nothing can be done to stop whatever is upsetting me, I am the only thing that can make me feel better. How? By choosing to. It’s just a choice, that’s all. The more that I am aware of the choice, the easier it is to let go of the feeling of desolation. It’s not always easy to see the choice, but it is always there.
Getting to this realisation by lunchtime on a flare day makes me feel a little chuffed. I am making progress, flares are just flares and eventually I will have a nice, new, pretty dress.
Several exciting things happened yesterday. It started with the nap that I took early in the afternoon…what, you don’t like a slow build?
I DROVE ALL THE WAY INTO THE CITY. ALL BY MYSELF. I DID. AND I EVEN DROVE HOME AGAIN AFTERWARD AND I AM OK! HURRAH!
Driving myself places makes is like being 18 again. It’s a freedom that being a navigating passenger just can’t provide. Sure, I have to wear sexy, thick soled shoes, thick socks and padded gloves, but who cares? I can drive again. Just as long as I don’t have to do anything the next day that involves leaving the couch.
Why was I driving, all by my lonesome, into a cold and drizzly Melbourne on this wintery Monday night? To meet awesome people, that’s why. With all of my stuck at homedness, I don’t get a lot of opportunities to enjoy the company of people that I don’t already know. Thank goodness there is Twitter. Some time ago, I made a bubbly new friend whilst tweeting about the Australian TV Series Rush. Having met up with Carly once during the comedy festival, I was happy to accept her invite to come and hang out with her at a premiere screening for season 3 of Rush. Turns out that was a good idea! Here’s a little look at the highlights from last night:
Not only did I get to enjoy Carly’s company, I was also privileged enough to meet up with Jenna and Renne, both of whom I have been tweeting with for so long that I can’t even remember how long. Always wonderful to meet online friends in the real world! Especially when they turn out to be friendly, fun people.
Take a breath, this story is about to get even more exciting…I also experienced what must be the exact opposite of becoming acquainted online before in real life! Megan was great fun to hang out amongst hot actor boys with and writes a great blog that I can now enjoy reading – as can you, if you follow that link!!
SO MUCH EXCITEMENT! It’s fun to get excited. It’s fun to have fun!! I am exhausted now, but it was all worth it. My fangirling days are mostly behind me (I think, check back in a month or so when it’s nearly time to be in the same room as Joss Whedon), but I had an awesome time feeding off the fanergy of others. Look, I know that sounds dirty and looks wrong, but it’s staying. One more time…fanergy. Being around excited people is as infectious as being around depressed ones, except in a much, much more brilliant way. I loved hanging out in the fanroom!
Not to mention, those boys are a bit of alright, yes? My prince is shooting across dirty looks every time a Rush promo comes on TV, which is a lot. Being a pretty lazy fan, I kinda tuned out part way through last season, but it would appear that’s my loss. The screening was very entertaining! I like shows that make me laugh and I also like shows where things blow up and Rush packs those together nicely. Not to mention, those boys are a bit of alright, yes? Yes.
Now I am so very sore. Complex Regional Pain Syndrome is a stupid, dumb brain, poo head, banana bum. Yes, it is.
What I forgot to mention was that we did not let the parade of people come through yesterday, my prince put his foot down, as I lay wincing in the bedroom and trying to pretend that they weren’t there. I am sure that the agent had a lot of fun turning away all the other potential buyers that he had invited to show up. That’s what you get for being a liar. Simply not being cocky and a bully from the start would have made this sale so much easier for him.
(WARNING: The following paragraph contains Amazing Race spoilers – just for last week’s episode. It then spirals into some dribble about spoilers)
It’s like Caite said on The Amazing Race, she U-turned those bitchy lesbians because they were rude to her when, really, she should have U-turned the cowboys, who will now probably win. Being rude will bite you in the butt. No, don’t tell me who wins, just let me watch it next week…why do people think that if they see something first it makes awesome sense to spoil it for everyone who hasn’t seen it yet? WHY DO PEOPLE DO THAT?! I mean, gosh, everyone who is actually cool knows that being trendy isn’t cool, that’s just what people who aren’t cool do to try and be cool, which they will never be because, clearly, they don’t understand what I’ve just laid out for you. So, the point is, don’t spoil shows and movies for people who haven’t seen them yet, especially me. I don’t want clues, all I need you to tell me is thumbs up or down, righto? Good.
Far too many appointments for one month. FAR. TOO. MANY.
I think that pretty much says most of what I wanted to tell you, I say the rest just down there in that video. I also talk a little about how I’ve been dealing with the stress of the appointment overload, show you my latest work in progress and let you know what I think about ‘novels’ that don’t end on the last page.
Did you catch me scratching my head whilst thinking? I got monkey class I do.
It’s talkie first this post, I recorded this one yesterday, on the most productive day that I’ve had all week! I quickly grabbed the camera to talk to you while I was feeling positive, it’s hard to stay positive amongst pain and I was so full of positivity yesterday that I needed to document it, lest I forget that it’s possible to smile on when things get rough.
Sammy makes a brief appearance to give me a kiss, what a sweetie.
Along with beginning the little project that I spoke about in the video, I managed to do two loads of laundry yesterday and get them in off the line before it rained (by seconds)! I also killed at writing my story, I breezed past the 8k word goal that I set with my writing buddy to have completed by today. A day early? Go me! My final massive achievement was to cook myself dinner, after not finding out that I would need to do that until dinner time itself. I washed the dishes in the kitchen, that had been collecting for a couple of days. I managed to go to the supermarket (which is across the road, but still an effort for me) and cook myself an easy chicken satay stir fry. I used a pre-made sauce and boosted it with a couple of spoonfuls of peanut butter…an excellent idea, in case you are wondering. I served that up to myself on some coconut rice and sat down (rather late) to eat, feeling mighty chuffed about doing so much.
How did I get through all of that in one day without a complete burnout? Pacing. Yes, that magical ‘p’ word that I preach practically every post. It’s ever so important. For me, pacing correctly is quite literally life changing in importance. If you are suffering chronic pain, it’s pretty important for you too. Not being able to do all of something in one go, doesn’t mean we can’t do any of it.
I am still feeling sore in the jaw. Talking is the absolute enemy, all of those fine movements of the jaw and tongue sends a gazillion pain signals to my brain. It is getting better, I shall keep on relaxing and working at making it better, rather than just waiting for it to heal itself. I’m all about the active relaxation at the moment, I need to be strict with myself. It’s not enough to simply rest when the pain flares up. I need to make that rest time count by interchanging it with doable activity and keeping my mind flexible to cope with the unpredictable flow of flaring and ability.
Sure, my face might be a bit skewiffy and eating is a slight problem, but I get there, it’s not the end of the world and the best news is, I’m coping with the sudden influx in pain much better than I think I ever have before.
The good news is that my ankles sure are feeling better today! The sickly sweet surprise is that my jaw has decided to continue it’s spaz attack and cause me a lot of pain and frustration. I’d growl if that wouldn’t just make things worse… Don’t worry, there’s more good news further down!
I had to cancel my plans last night, not that I had anything huge planned, just hanging out with some friends, but when it started to get too sore to open and close my mouth, I realised that being around people probably wasn’t the best place for me. Most people rely on quite a bit of facial movement in order to communicate and that was more than I could handle. It was a bit disheartening to spend a second Saturday night in a row stuck on the couch instead of out and about, but a little bit of wine and some yummy curry cooked by my fabulous prince/chef made the night not a total washout. I am ever so lucky to have nabbed a man who spoils me, sorry ladies, I’m not letting this one go!
I have been super productive about my writing plans this week. My little ghost story now has over 5000 words. I can’t promise that more than 100 or so of those words will actually matter to the story in the end, but it’s fun letting the characters tell me their stories with a good, uncensored, finger ramble. I haven’t even met the ghost yet!
I had one of those moments yesterday that, for a little while, makes me think that I must be psychic. I try not to question my psychic powers too closely, I don’t want to go messing them up with words like ‘logic’ or ‘co-incidence’. I had been wanting to buy a Flip video camera for some time, they’re so little and handy and I thought the HD quality would make for better looking vlogs. Yesterday, I was feeling rather stiff and sore on the couch when I got an impulse to go and buy the camera. There have been many opportunities when I could have purchased it in the past and hadn’t thought to, however on this day, without having planned any shopping whatsoever, I felt ever so strongly that I should go and buy that video camera. I quickly looked them up online, figured out which one I wanted and then jumped straight in the car and drove the short distance to Harvey Norman. When I got there, aside from the terrible service, I discovered that the camera I wanted was on special. I saved $60 because I went on that day. Pretty exciting. Definitely some sort of supernatural ability!
So here we are at the talkie part, I’m chatting a bit about how confusing it is to be better for a little while and then suddenly very sore again…
Wow…what a busy week it has been in my world! A couple of posts ago, I spoke about the difficulties that come along with trying to socialise whilst suffering from chronic pain. I was pretty determined not to turn into a suburban hermit and so socialise, I did.
I finally got to meet up with Carly, whom I have been chatting online with for some time and delightfully, she is just as bubbly and friendly in person, and Jen, whom I met through Twitter (“useless medium”, my rear end) and who will actually go and see The Last Song with me, which we know will be sappy and predictable and that those are probably the reasons we’ll love it. It’s one thing to connect with like minded people online, but a far greater thing when those connections turn into real world friendships. For a long time, I have been unable to do much socialising at all in the real world and so to be at a point in my rehabilitation where I can fit in my friends and make new ones is pretty thrilling. Next week I have plans to meet up with a couple of CRPS sufferers who also live in Melbourne, the lovely Lisa, whom I’ve met briefly before and Nicole, whom I connected with through Facebook (a cluttered medium, but not useless).
Last Tuesday was the first time I have independently driven to the city, seen a show, chatted over dinner and driven myself home in, quite literally, years. I hit a hiccup on the way home when I got stuck in roadworks, I hadn’t bargained that extra half hour into my ‘ankle will make it approximately this far’ calculation and ended up a bit sore at the end of it. It was worth the pain to have some fun and I learnt that I need to allow a bit more room for unexpected happenings when I’m figuring out how much action is too much.
In this vid, I’m babbling a bit about pacing and the way in which I kinda failed at that this week…it’s not such a bad thing, every time one fails at pacing, one learns how to be better at pacing!
So now it’s Saturday night and unfortunately, I won’t be making it to that birthday party. I am that thing I mentioned. It’s not all bad though, my legs might not want to be stood on, or even down (they pretty much just wanna rest on cushions and that still hurts a lot!), but I’m keeping my chin up. My prince is out picking up some food and wine to make up for the fact that we aren’t going out for dinner and drinks and we have plenty of movies just screaming for a screening. I hate having to cancel plans due to pain, however the blow is lessened slightly by the fact that I have at least been out and about in recent days and that the birthday girl is super understanding and I can make it up to her another day.
I shall keep breathing, relaxing, resting and, like all other flares, this one will go down in time.
Yesterday I met with a pain specialist whom I had seen when I was first diagnosed with CRPS, back in 2007. I was in need of a new specialist after the old one decided to bully and lecture me rather than doing any doctoring. I have developed a bit of a fear of going to pain specialists, not without good cause but it is a nervousness that I need to suck up and not allow to influence my actions. I still need medical help, there’s no way around that. Dreading doesn’t help anything and so I’m working hard to overcome this fear.
My hands were flared up, very painful and quite visibly swollen and discoloured. Flares are never fun, however when one suffers an illness that is invisible a lot of the time, it’s kind of nice to have it show its face on a day when a professional will be looking. The appointment went well. The doctor was very receptive to my report of my condition, rather than simply putting me in a CRPS or RSD labelled box. All doctors should throw away those boxes, when it comes to pain malfunction, we’re all a little different.
I’m going to try a new medication. I’ll write more when I have a feel for its effects, the intended and hoped for response is that it will block some of the pain signals from getting through. The flares have consumed me so frequently lately that I feel that I’d benefit immensely from pharmaceutical back up for my self rehabilitation. It’s so hard to keep fighting back when the bad days seem to outnumber the good 10-1…but I have no intention of giving up!
In this video, I am talking about the difficulties faced when it comes to socialising and enduring chronic pain. I was very sad to miss another meeting with Carly due to stupid flaring and it got me thinking about how many times I have needed to cancel plans with people since developing CRPS. Socialising in pain can be pretty difficult and frequently canceling is incredibly frustrating. It’s not always easy to go out and have fun, but hiding away as a suburban hermit really isn’t much fun either. Finding the balance is something that I am yet to master…