Weekend one.

Yes I am aware that I haven't updated since the end of the first day. I'm sorry. The battery on my phone was too low to access the internet. Sad times but now a) I am at home and b) I have acquired a dongle for the remaining two weeks. Yaytimes.

What have we been doing on programme then? Well firstly I'll have to acquaint you all with the names of the sessions as they seem intent on re-naming everything.

Body Conditioning/BC = Physio

Active Zone = Gym session

Self Management = Psychology

Mindfulness = A type of meditation type thing. (lovingly dubbed mindlessness by one of the parents)

Activity/OT= Occupational Therapy

Healthy Living = Discussion with the nurse

Communication = Teaching you ways of putting things across to people 

Pain Eductaion = Discussion With the doctor.

Individuals = Discussion with your key worker.

It is a rather full day.

That's my time table for last week.

Weeks two and three are pretty similar.  Except Mum has most of week two off (Which I think is wholly unfair!) All of it is rather exhausting. Most Day's there is 2 hours of BC. 2 HOURS!!

 We've hit a bit of a pot hole when it comes to the BC though. Cause we're supposed to keep going until the "quality of movement" (how well you're doing each exercise) changes, however doing it that way reduced me to not even being able to walk back to the flat, I had to borrow someone's wheelchair! So that's been a little stressful. Not helped by the fact the main physiotherapist just didn't seem to get it. Though I think we've worked it out by dropping one exercise completely (being step ups as I'm already doing them going up the steps to the lifts in the flats) and changing a couple of other ones.

What else shall I talk to you about?

In OT we've done things like activity cycles, boom & bust and all that. Doing lots of things and then crashing rather than staying at a sustainable level. Essentially, the same way the economy did, except with energy/pain levels. And we've done setting SMART goals (Specific, Measured and Monitored, Achievable, Realistic and Time Framed). We did this in an example go by setting 3 goals for the weekend. I've done two of three so far.

In the psych sessions we've been introduced to the "hot cross bun" (see below) which stems from Cognitive Behavioural Therapy but what they actually do has some very key differences.

The "hot cross bun" is created because the thoughts, feelings, body sensations and actions all influence each other. (shout up if you're confused)

What you are encouraged to do is "check in" with your "hot cross bun" (yes I know there are a lot of silly words.) and notice whatever's going on whether it's positive or negative. The main difference between This and CBT is it doesn't try to get rid of the negative thoughts or feelings, rather it tries to get you to change how you react to them (that being the actions) by noticing what you do and deciding to do either that or something else, rather than just doing it by default. Or at least that's what I think they were trying to get across.

We've had a look at "values" and "goals" and examined them and stuff.

My Key worker is Miles (he's a cowboy). He's one of the Psychologists. We get along pretty well I think. We do quite a lot of joking about and getting wildly off track, but y'know, it's all good. I'm glad I've got him rather than some of the other team members. There'd be a bit of a personality clash with a few specific ones, not all of them, and nothing major but just enough that the sessions wouldn't be as productive.

I think I'm about done for tonight. I hope to update sooner than I did this time. 

One last thing, here's some pictures of the view from the flat. (see facebook for more/higher detail)
Til next time, Becca
Xx

well that's day one done, can i go to bed yet?

SO, this here mobile is actually the only internet access i have. *sadface* i'm trying to persuade mum to get me a 30 day dongle not sure how well that's going... so i expect you're asking what it's like. maybe. it's umm it's nice i think. the flat's are very nice and my flatmate hannah is very nice too! there are 6 of us on the programme all girls, all brought their mothers with them. and now here's a statistical anomaly for you, there is a girl, of a similar age to me who also has CRPS. and considering it only affects either (depending on who you belive) 1 in 5000 (bbc) or 1 in 11000 (nhs) and the average age for diagnosis is 42 (also the meaning of life)then that really is a stroke of luck is it not? now, the actual programme, it's rather intense. today has mostly been introductions and paperwork but me did some team building type things, and some light exercising, stretching and such. we met most of the team, there's about seventeen thousand (3 or 4) Psychologists and a few physio's and a few occupational therapists. it seems like a whole lot of hard work but it seems like there'll be some fun and we'll get something out of it hopefully. anyway til next time (i might even have a decent internet connecting by them.) Becca Xx

That is a long time for a bath! Aren't you going to go wrinkly? An explanation by way of introduction.

So no, I am not spending three weeks in a bath, I am spending three weeks in Bath.


First off I'm going to give you a few details about myself. Because even though almost all the people reading this will know me already I don't want you being confused if you don't :)
My name is Rebecca, though I will answer to pretty much anything. Becca, Beckii, Boot, Eleanor, Oi, You, and Geoff are usually the most common. But feel free to call me whatever you will.
I am 16 and I live in the UK.
I have Complex Regional Pain Syndrome (CRPS) it, curiously enough like me gets called many different names, the most common of these alternatives is Reflex Sympathetic Dystrophy (RSD). Starting from the 7th of march 2010 I will be on a three week course of treatment in bath, which will be primarily what this blog will be about.

I got the idea for this blog From a lovely person called Kaylee (http://kayleecoovert.blogspot.com/ ) who is of a similar age to me, also has CRPS and is also embarking on a treatment programme in the near future. She will be going to the clinic in Cleveland, Ohio and will be blogging about her experience on the above link.

Now, back to my treatment. I will be treated at the incredibly grand sounding (and looking) Royal National Hospital for Rheumatic Diseases, the department I will be dealing with is the "bath centre for pain services". They do a three week Adolescent Pain Management course, which is what I will be going on. It's a multidisciplinary course, dealing in Physiotherapy,  occupational therapy, hydrotherapy, talking therapy, cognitive behavioural therapy and probably a whole array of other things I haven't  even thought of yet!

Anyway, like I said I've stolen this idea from Kaylee. I will, like her be writing about my treatment as and when I have the time or energy or internet access. I'm not sure yet as to the status of internet access where we are staying. If they don't happen to have internet access then, well, I may be spending quite some time in Starbucks (other brands of coffee shop are available) or other places with free wifi.

So yes. Until I have more things to tell you I shall bid you adieu.
Toodlepip.
Becca.