Apologies for no updates last week, our timetable was rammed and it was so so tiring. Thank you for the concern as to where I’d gone! I will write the days up retrospectively but thought it best to get today’s info down whilst it’s fresh in my mind.

Coming back after a weekend off comes with a mixed bag of emotions. By Friday all you want is home. By Sunday you realise just how hard keeping up all these things is going to be in the real world, and you long to be back at the hotel where everything is easy and planned and you’re told what you’re doing right/wrong.

First session at 10am was Weekend Review. Very positive, I’ll fill you in on the deets in my Weekend Two post. Straight after was a talk on Pain. I can’t say I enjoyed it much or found it particularly useful. We were shown this YouTube clip as an intro into understanding pain. I’ll let you make your own opinions… They couldn’t get the audio to work for the next clip, a TedTalk by Lorimer Moseley, an Australian ‘pain expert’ but the PT explained the basics to us: His approach to chronic pain is referred to as the neuromatrix model, which claims that people who suffer chronic pain have become neurologically sensitised to pain signals. Basically because we’ve been in pain for so long our brains over react to pain stimuli, interpreting the pain as worse than it actually is. Our reaction to this pain affects the way we behave the next time our bodies sense pain (we overreact, think the pain is worse than it is because we’re scared of what happened last time – or something like that. I was beginning to lose interest at this point) We can also grow more pain neurones over time – google “neuroplasticity and pain” for a more scientific explanation than my brain is capable of right now…

I can completely understand how the neuromatrix model of pain fits for conditions like fibromyalgia where there isn’t any physical injury, your body is just screwed up, but I struggle to see how this is relevant for EDS. Dislocations are real injuries and actually we seem to cope with them very well. The PT went on to tell us this anecdote that Lorimer Moseley recounts to explain his theory. I had been pre-warned about this BS before I came on the course but it still angered me that the RNOH use this to explain EDS pain:

Lorimer is Australian and goes on regular hiking expeditions into the outback. One day when on a hike, he felt a sharp sensation in his calf. He ignored it, thinking it was a normal experience of a sharp twig that had stuck into his leg through his sock, scratching him. Several days later he woke in hospital having become only the 2nd person ever to have survived the bite of the deadly “Inland Taipan” snake. He was very lucky and realized how close he had come to death.

Later that year he went on another hike. He felt another scratch on his leg. This time his response was completely different. He reports that he fell down on the ground clutching his leg, shouting “take me to the hospital, I’ve been bitten by a snake!” When his friends calmed him down, they saw that there was in fact, a sharp twig sticking out of his hiking sock! This story indicates that memory, emotions and previous experience can have a very strong influence on how we react to pain.

Fabulous. My joints aren’t really damaged from years of misuse, I’m just imagining they hurt because one time I did have a sore knee and now I’m scared of pain. Or something. Whatever, I much prefer the quotation my equally disgruntled course mate replied with: “Pain is whatever the experiencing person says it is, existing whenever he/she says it does” McCaffery, 1968.

After the pain talk we were free until after lunch. All of us are planning to have an Indian head massage at the spa this week. Today was an easy day so it would have been an ideal time, but Sod’s law the spa is shut on Sundays and Mondays. Hopefully I can fit one in later in the week.

After lunch I had a one-to-one session with my OT. Normally your asked to fill in an activity diary retrospectively for the two weeks prior to our admission (it might be useful to do this before you go in if you don’t keep a calendar/diary because it’s pretty hard to remember) Because I basically did nothing before the course – just sat up in bed all day doing little things to pass the time – we decided it’d be more useful for me to plan the two weeks after I leave the course. This is pretty hard too. I generally play things by ear and do things on short notice so I just planned two days as an example of what I’m planning to do when I leave. The OT then helped me colour code the activities in red, yellow and green for tasks that aggregate or worsen pain/symptoms, tasks that make you aware of the pain/symptoms, and tasks that are relaxing and don’t hurt or make you symptomatic. You should have a mixed of red, yellow and green every day but shouldn’t have blocks of one colour because that indicates a boom and bust cycle. I’d planned my day(s) pretty well:

20140731-064844-24524213.jpg I suspect it’ll be much more difficult in real life but it’s a good way of analysing your days.

After that I had one-to-one PT. I’ve got the hang of body scanning (assessing whether your skeleton is in good posture/alignment) for everything but my knees. I can see or feel when most of my other joints are out of place but my knees are so used to being locked in a hyperextended position I find it really hard to correct it. This is what RNOH use kinesio tape (or k tape) for. Despite seeing it on loads of athletes in the Olympics and claims that it helps with injuries, there isn’t much evidence to suggest it actually does that. At RNOH they use it to draw your attention to a joint or body part that is hyperextending so you can adjust your position. My PT got me to stand with “soft knees” not my usual locked out in a hyperextended position. It feels really weird, like I’m standing with my knees bent but they’re actually straight. I feel unstable and find the position tiring on my quads because I’m actually having to engage them in that position, rather than just hanging off my joints. She then placed the tape across the back of my knees. I can’t feel it when my knees are soft but when I lock them out it pulls slightly on my skin, reminding me not to do it. This is what it looks like:

20140731-104806-38886242.jpg The branded K tape is quite expensive and not particularly more useful than your bog standard tape which the PT used on me. The bottom layer is a porous tape which you can use alone but it didn’t provide enough resistance for me so there’s a tougher tape over the top. The tougher tape can irritate your skin so if you do need it, put it over the porous tape. Here’s some pics of the tape, hopefully you can make out the brand (you can get it in boots apparently). I’ll post the links when I find and buy my own.

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