This blog is a result of the very enthusiastic twitter chat on Monday that introduced me to #PEPA16 -
The chat was Physiotherapists as leaders in physical activity #PEPA16 tweetchat 13 June 2016
(see the full transcript here)
Out of this chat has come a list of 6 things I wish my physiotherapists had known when treating me - someone with a connective tissue disorder (EDS) and an autonomic dysfunction (POTS), but probably applicable to many other conditions too:
1. Being told I need to exercise more in order to manage my condition is beyond horrible.
Because I used to do a lot of exercise -cycling, sports etc, but was stopped by my symptoms. I missed exercise and was no longer capable of it. It made me feel even more guilty about not being able to do the things I once could. Even more helpless.
2. Changing the definition of exercise can help get round this - but it would be better to use a different word. This allows the patient change their definition when they are ready.
Exercise is not only running and jumping. It is moving. My current definition is "Moving with control and purpose." Moving deliberately and without flop. Housework counts if it's done with control - but not if it's done in zombie flop mode. So why not talk about controlled movement instead? (be careful about just using 'movement' - for someone with hypermobility like me, flopping around has minimal benefit and a high risk of injury. It can also be confusing to be told that all movement will help, when we move throughout the day and it isn't helping! For me movement must be controlled in order to be helpful.)
3. Be inventive, creative and ingenious.
If you are going to encourage me to be active, be armed with ideas that are within my grasp. If I'm housebound and barely managing basic self-care tasks, then adding 'go to the gym' or 'spend an hour doing physio exercises' into my task list is a bit silly. Looking at ways to turn these basic tasks into productive activity might be the way forward - teeth brushed in an exhausted-leaning-against-the-sink way isn't active - but what if we switched to sitting down to brush the teeth? Working on sitting upright without leaning for that short activity.
What about making a cup of tea while standing with poise and using all our muscles? It's surprisingly difficult and surprisingly effective. And surprisingly rewarding. I can still remember the first time I did that - the sense of achievement in managing it without joints slipping was incredible.
(Note: I easily stop using various muscles, and exercises that help them wake up are really useful.)
And while I still can't do the hoovering from standing due to the combined instability of feet, ankles, knees, pelvis and spine - by wearing a pair of kneepads I can do it from my knees - therefore giving my hips and core a good workout without straining my lower limbs.
4. Sitting down doesn't have to be the enemy.
I was amused to see that during the part of the chat about how active the physios were themselves, there were many comments about sitting at the computer for too long - and most solutions were to keep standing up or have walking meetings in order to be active. Now I agree that getting up can be good, but sitting doesn't have to be passive.
And for many people with mobility problems, finding ways to be active whilst sitting might be the best place to start.
You can chair dance while working. You can sit up using muscles instead of leaning.
Or sit/bounce/dance on a gym ball or wobble cushion.
You can explore the movement in your spine.
On a swivelly office chair you can swing your knees while keeping your shoulders steady.
And if there's a wheelchair sports club anywhere near - the possibility for sitting activity is huge! (you don't need to be a wheelchair user to enjoy wheelchair based sport.)
Similarly lying down can be active too. Even without any formal exercises. Several years ago when at my worst I learned to exercise lying down. Gently moving my spine while lying down. Rolling over in bed with deliberate and controlled movements rather than flop (I'm hypermobile so I have an impressive capacity for flop!) Gently engaging muscles without even moving the limb also helped me in those early days of finding ways to become more active, and is something I still use on high-fatigue days.
Little, often, and within my power. That is what active needs to be. Not long, boring, repetitive exercise lists. It is easier to be motivated about a formal exercise routine when you have already experienced benefits of being active.
Over time my 'active' has evolved - what started out as half-tensing muscles when lying down and progressed to making a cup of tea with gymnast level movement awareness, and doing some tailored exercises to music (more of a dance than 'physio'), has become contemporary dance, lots of controlled movement throughout the day, a much better level of condition management, and a store of formal exercises that I dip into when a joint plays up.
6. Use the expertise of patient led charities.
If you haven't lived it, you will never truly know the impact of the suggestions you give.
I have been given exercises that have worsened my condition (common in people with hypermobility syndromes) so I have good reason to treat your advice with caution. Especially if you haven't already made it clear that not coping with an exercise isn't a failure, but an indication that we need to tweak our approach.
A patient led organisation that encourages self management and exercise can encourage activity from a place that does know the challenges. That has had injuries from exercise, that has had crushing fatigue for days from pushing to hard. A patient can talk through how they have coped with these constructively in ways that professionals can't; because it is lived and it is real.
I have helped out in a number of The Hypermobility Syndromes Association's events, giving a talks about self management - including my journey to becoming more active, and it has had a really positive effect - giving people a new perspective on exercise and activity and some tools to help themselves. And I'm not the only one - so don't be afraid to enlist patient led charities and patients themselves to help encourage activity.
(Here are some other physio-related blog posts which you might find interesting:
6 things I wish I'd known about physiotherapy.
Living with poise.
World Physiotherapy Day: Fulfilling Potential)