Saturday, 25 June 2016

Adaptive Gardening

In between the bouts of rain I spent this morning pottering in the earth.

The patch I was working on today had 3 young oak trees - about a foot high. Probably planted by a squirrel, but now we have discovered them we want them to grow up healthy.

Only problem is...nettles. Millions of the things. A whole jungle of them hogging the light and stealing the nutrients, choking our little 'mighty-oak-to-be's.

My job was to clear an area around each sapling. To let the light in and take away their competition for a while.

Here's my 'Kit list':

Off Road Power Chair (if you are a regular reader you'll know how much I love my X8) - to get me to right next to the mini-oaks
Strapping, taping, or lycra orthotics from neck to hands and toes (to give me a chance of keeping my joints in roughly the right places)
Supportive boots that are good with mud (OK, more like 'already covered with mud, and won't be ruined by my bendy-legged habit of sitting on my feet')
Dancers knee pads (so I can slide out of my chair and crawl without hurting my knees)
Dungarees ("Overalls" if you speak US English) (Covering the knee pads, and also stopping me from bum-shuffling further than my trousers...)
Long sleeved rugby shirt with elasticated cuffs. (Essential nettle protection - their stings get through lycra compression top plus tubigrip!)
Wrist braces with metal inserts (so I can apply pressure through my hands without as much injury)
Bramble proof gloves (they tend to be nettle proof too)
A big bag for uprooted weeds.
A hat. (A new addition to my gardening kit, because I always get mud in my hair.)
And my little garden fork with it's adaptive grip and cuff attachment.
Like this, only a fork....and with the cuff bit added from the image below.
How I love this little gadget! Instead of having to grip the fork properly when using it, I just have to place it where I want it, lean a splinted hand onto it so it goes into the ground, then lean my arm against the cuff and let my bodyweight magically uproot the local nettles. Then scoop up the loosened nettles into the bag.

 And after a couple of hours of mud crawling and fork-lever-ing (interspersed with resting and chatting) the three lovely little spaces were cleared. The young oaks can breathe again.

An exhausting but lovely morning.

And I STILL got mud in my hair!

[Note: You can get the handle adaptor and cuff from quite a few places, including the HMSA's shop - Hypermobilityshop.org - and no, this isn't a sponsored post in any way, I just love my gadget and thought you might like to know where you can get them from.]




Monday, 20 June 2016

Inconsiderate parking?

I was about to pop into the Post Office. The accessible parking spaces with their own dropped kerbs were full so I'd parked in a standard space. Just enough room to get out, and the dropped kerb was only about 3m away.

As I was getting my stuff together a van pulled up.

Yup, you've guessed it.

Right between me and the dropped kerb.

Leaving a choice of: trek 50m along the road, behind parked cars which have a tendency to reverse suddenly, or pull out without being able to see or be seen, and wheel round a van into 2 lines of traffic will be attempting to squish into 1 1/2 lanes of road and hope to not get squished.

ARGH.



Not sure I fancy asking a skin-head delivery driver to move his van.....but it's worth a try...

..."um...excuse me, I need to get to the dropped kerb" I tentatively say as he hops out.

Pause. Realisation dawns.

"I'm so sorry!" - he gets straight back in and moves the van so I get safe access.

My 'inconsiderate parking' rant train of thought was picking up steam, but before it got very far, I realised something too.

He had parked considerately. He had clearly thought about other road users in choosing where to pull up, and in pulling up so close to the kerb.

He had just forgotten about wheelchair users who might be parking in non-disabled spaces and needing to reach the dropped kerb. And fair's fair, before I became disabled, I'm not sure I'd have thought of this either.

And his quick, cheerful, and considerate response couldn't have been better.

Hopefully he will remember to be careful about blocking access to dropped kerbs in the future.

And I will remember that skin-head delivery drivers can be charming, and that letting someone know my needs can allow them to switch from apparently inconsiderate yob, to an absolute diamond.

(Happy Accessibility Symbol Sticker: available from StickmanCommunications.co.uk



Friday, 17 June 2016

A good decision

Yesterday I had written my to do list.

It was a sensible one, with a few key items. By midday I'd crossed off a good number of tasks.

I took a break - and then came back and looked at the next task, gathering my thoughts to try and push through the fog and get it done. Feeling dizzy and sick but also that sense of 'I must get it done, I must keep going....'

Then it hit me:

If preparing for this important but not urgent phone call is this tough, I won't actually be 'with it' enough to make the best of this conversation.

Not only that, but I'd written a long blog post which uses up a lot of brainpower. It just does. So after writing a very well received blog why should I feel bad about having used up my energy?

I could take another break. I could try again later or leave it til tomorrow.

When fatigue is setting in, it is amazing how liberating a simple decision that 'I don't have to do this now, and I decide not to do it now' is.

It isn't hanging over me as an unfinished task - it is sitting on my notepad, ready for tomorrow. It won't be forgotten, but nor do I need to do it today.

So now I can recharge without fear or guilt.

I can recharge knowing it is what I need.

Knowing that the overall effect will be to achieve more in the long run.

Knowing that here and now I made a good decision.


Thursday, 16 June 2016

6 things I wish my physiotherapists knew. #PEPA16

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.
Why?
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)

Monday, 6 June 2016

Medical misunderstandings: anxiety or logic?

How do you raise an issue with a medical professional without being seen as over-reacting and over-anxious?

A friend with EDS was recently referred for surgery. Knowing that poor or slow healing is a part of EDS, she raised the issue with her surgeon.

The surgeons response was to tell her to stop worrying, and that it would be fine. Perhaps what he heard was 'normal pre-surgery nerves' not 'well informed valid concern'.

Knowing that with EDS, this is not an answer based on scientific fact, she ended up having to refuse treatment.

Others in similar situations have had surgery - and been left with damage that could have been prevented/mitigated if their concerns about interactions with EDS had been listened to.

Years ago I collapsed with POTS symptoms. I didn't have a POTS diagnoses, but knew I had EDS and that POTS was linked. I tentatively told my consultant that I felt like I wasn't always getting enough blood to the brain (which is what happens in POTS) - it was dismissed out of hand. Consequently correct diagnosis and treatment was delayed by over a year. All because my description was seen as anxiety-based and over reacting, rather than a logical attempt to describe something I didn't really understand.

On the other hand, I have also experienced raising a concern and receiving a considered response.

I am an expert on my daily life and the conditions I have lived with for years, and have a pretty solid understanding of how certain things are likely to affect me. On the other hand, the medical professional will have a depth of knowledge in their area which far outstrips mine.

Yes, a patient’s query might be standard nerves, but it might also be an important issue that hasn’t been considered.



Together we can find the best solutions.


Friday, 20 May 2016

Proprioception and dance discoveries.

People with connective tissue disorders like Ehlers Danlos Syndrome often have poor proprioception - the body's intrinsic awareness of itself; knowing where your hand is even if you aren't looking at it.

Poor proprioception results in failing the doorframe slalom and much general 'clumsiness'.



Despite my EDS, I always knew my proprioception to be unremarkable. Doctors said my body awareness was fine, and I'd be able to tell if it wasn't...wouldn't I?

During a conversation in my 20s I commented "You know that thing where you lie down and forget where your legs are until you move them?.." 

It turned out they didn't. No-one else in the group 'lost' their limbs when relaxed and not looking at them. No-one else had a childhood game of "guess where you left your legs without looking at them and then move them to see if you were right".

It also seems that when a Dr tells you to close your eyes, then moves your leg and asks what angle your knee is bent at, most people just answer by 'knowing' and don't use the logic of "this part of the leg feels like it's this angle because of this sensation from clothes/skin folds/muscle tension, that part of the leg feels like it's at that angle, so the reality is probably half way between the two". 

So I had to accept that my proprioception, though present, is pretty rubbish.

Not that it changed much. Other than I now know why I find physical pressure so... grounding?.. comforting?... home? (it's hard to find the right word for the certainty of position that it provides - and the resulting mental and physical relaxation). My normal was still my normal, and it didn't really matter if other people were a bit weird compared to me.

But sometimes something happens that really brings my proprioception issues into focus. Like an exercise in dance last week:

In partners, Person A shuts their eyes and dances while leading person B. Person B, with eyes open is led but also keeps person A safe - preventing collisions etc. 

This is apparently aimed at exploring your body's proprioception - 'listening' to a sense that we don't often consciously take notice of.

Everyone else loved it - found it initially strange, but once they'd learned to trust that person B would keep them safe, it was really freeing.

But I couldn't hack it. It was horrendous. I stopped after a few seconds. Even the memory of it makes me want to curl up in a ball. Yurk.

I'm not sure there are words to describe it, but I shall try:

I sat in my chair and my partner had a hand on my shoulder. 

Being in a wheelchair you cannot gauge distance. A small push on a smooth floor can travel centimeters or meters. and you have nothing to give you any concept of distance traveled.

The hand on my shoulder moved with me - it wasn't a reference point, it gave me no usable information. I had no idea where I was. I don't just mean I didn't know where in the room I was - I couldn't even tell I was in a room. Other people spoke of having a sensation of where they were - even if they weren't right. The picture in my head was blackness. Total nothingness and a desperation to 'find' something that wasn't nothing. I wanted a solid reference point. I gripped my wheels, and made a few tentative pushes. Each time I let go of the wheels the sensation of being lost was overwhelming (or possibly the lack of the sensation of being 'here'). I wanted to cling to my chair so I could feel...real. My brain going into overdrive in it's attempts to get a handle on where my body was. It is probably the closest I've ever been to having a panic attack. The only time I felt 'connected' was when I was holding my wheels still. Gripping them so tightly it hurt and leaning forward so I could feel my torso against my legs.

I opened my eyes.

I wasn't using and appreciating a sense we often don't notice, I was discovering I didn't have enough of that sense to be able to function. And I hadn't expected it. Yes I knew in an academic kind of way that my proprioception was off - but that's not the same as finding yourself totally incapacitated by a lack of it.

So instead of continuing the exercise we sat and discussed the experience. 

I thought if I tried something similar sat on the floor instead of the chair, I'd be OK - maybe it was because the wheelchair meant I had no connection to the security of the floor - so the next 'eye's shut' exercise I tried lying down (it was fine) and then moved to sitting up, decided it was a bad idea (ARGH WHERE AM I?) and returned to maximum floor contact again.

In hindsight I should probably have done something to counteract the sensory deprivation that had come close to totally overwhelming me. Given myself some really strong, solid, proprioceptive feedback. Perhaps got a bear-hug from someone. or squashed myself into a corner for a bit, or hugged something heavy. Like the corner of the wall. Rocking can help if my lack of propriocetion is just being a bit annoying, but not when it's reached "HELP!! I CAN:T FIND ME!!" stage. (...OK, so my sense of proprioception probably doesn't change, but my ability to use the layers of coping strategies that I rely on certainly does!)

Either way, I shall not be dancing with my eyes closed for the forseeable future. Not unless I will be getting a lot of feedback from external pressure to compensate for my dodgy proprioception!

[Note: Poor proprioception is not limited to EDS. I believe it is also common in autism and sensory processing disorder. I wonder if my experience of poor proprioception and sensory seeking to counteract it is similar to that of some people on the spectrum.]


Saturday, 14 May 2016

Anxiety, depression, cards and teamwork

Over the past month I've had the privilege of working with a group of college students who live with anxiety and/or depression, to create keyring cards that would help them (and probably many other people too). Not based on what experts have written, but based on their experiences of everyday life.

There's been much drafting and re-drafting, and help from a few other consultees too - including an epic facebook chat with Imi, creator of 'The Upside Down Chronicles'.

Clearly every card will not be suitable for every individual with mental health challenges, but that is the beauty of the keyring cards: you choose to use the ones that work for you.

And now the cards are here.

Some specific to mental health, but many are applicable to many situations and conditions.

Explaining the basics so friends and family can understand a bit better.

Making asking for support a little easier

 Asking for a hug.

And anyone who knows Imi will not be surprised that she is behind this one...


A huge thank you to everyone who made this possible, but especially to Imi for all her help with editing and insights into mental health conditions, and to my team of college students, without whom none of this would have been possible. I hope you are proud of yourselves, because I think there will be many people now and in the future, who will be helped by your work.