Wednesday, 16 September 2015

What I Learnt at RNOH Pain Management and Rehabilitation Programme

'They tried to make me go to rehab'...and I went. 

I'm on my fourth week home from spending three weeks in Stanmore, on the amazing, life-changing Pain Management Programme. 

I intend on writing more in-depth posts about various things I learnt during my time in hospital but thought I'd give you a little inside scoop of what kind of things chronic pain sufferers are taught during their stay at RNOH.

The main things that are constantly reiterated are the 'Three P's' - Pacing, Planning and Posture. 
It's funny how a lot of us on the programme did similar things during our daily lives, we'd take on a task, go at it full-throttle, no rests, no asking for help - just get it done. We didn't pace and we certainly didn't plan. Now, if I decide to clean the bathroom, I do it in stages. I plan what day I'll do it, I make sure I haven't got anything else strenuous to do on the same day and I take a lot of breaks, I sometimes do it over a few days. 

Pacing comes into everything; sitting needs pacing, driving needs pacing, writing, reading, walking, everything needs to be paced. If I'm sat in a certain position and it begins to hurt, I'd never have got up and stretched, I'd have changed position and carried on in discomfort. Now I move about and do some gentle stretches before the aggravating pain begins. I still get it wrong and I pace certain things better than others but I'm learning.

As a bendy, I should be really concerned with my posture. I wish I'd listened to my Nan when she told me to sit up straight. Think about it, slouching is stretching your spine, ligaments, muscles etc as you're hunched over - sitting up straight is a much more natural position for the spine. Since I bend a bit more than most, I shouldn't be slouching. I'm very conscious of my posture, even when standing and lying down, but I have to pace this too. I can't just change the habit of a lifetime and sit with good posture automatically, it hurts, I can do it for a short amount of time and then move about. I'm retraining my body to consider good postural management.

Finally, physiotherapy. The PT's at Stanmore are amazing and I was lucky enough to work with two awesome physio's, I'll be forever grateful to Jason and Sophie. In the past, I've seen PT's that don't know much about EDS or living with chronic pain and was told I MUST do my exercises twice a day. C'mon, I'm in agony on a daily basis, I don't want to do lunges and gym ball exercises daily AND live my life. My Stanmore therapists gave me exercises catered to me and we assessed my baselines for each activity; some exercises I can do five reps of, others I can do two, and that's okay because it will only increase as time goes on. I also only have to complete my physiotherapy twice a WEEK. They understand that life gets in the way, as do flare-ups and various appointments so not to push ourselves because hoovering the living room or cooking a meal classes as exercise to a Spoonie. 

I learnt a lot; I've accepted that chronic pain is a lifelong haul (hooray) but I know how to deal with things so much better now. The three weeks at Stanmore really have made a huge difference and I'm proud of how far I've come in such a short space of time.


  1. I really really need to work on my pacing. I suck at it so bad. Also my posture. My old PT always used to shout at me for slouching
    Beth x
    Mermaid in Disguise

    1. I'm forever being told off for my posture but my PT and OT explained the importance and didn't have a go at me so it sinks in more x


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