Saturday, 16 July 2016

A bendy perspective on hypermobility and injury.

Injury in hypermobility syndromes (such as joint hypermobility syndrome, Marfan syndrome, Ehlers-Danlos syndrome [EDS] and stickler syndrome ) is a big area. This is a brief personal look at just a few aspects. Other people will have different approaches that work for them.

In someone with a hypermobility syndrome (HMS), who gets far more than the average number of injuries such as sprains, strains, dislocations and pulled muscles, what is an HMS related injury and what is a 'normal' injury?

My current answer would be:

If what happened carries a high likelihood of injury in an average person, I class it as a 'normal' injury. Sprains, strains, breaks - and even dislocations - from a fall are 'normal'. So are pulled muscles/ligaments from walking on rough ground or overdoing an activity. These 'normal' injuries will be affected by my HMS - a longer recovery time, and tweaks needed to rehab exercises, but aren’t really caused by it.

If, however, the activity I was doing would normally carry no risk of injury - and I managed to injure myself anyway, then I would class it as a 'HMS related'. Injuries that fall into this category include dislocating my wrist when attempting to cut a mushroom.

Then there is a grey area, where, for example, my injuries are more severe than would be expected in a non-bendy person.

Personally I categorise these as "'normal' injury – but probably affected by my HMS" where-ever possible. Because this works for me.

You see, I have to live with my HMS. I cannot afford to be afraid of it.

As a young adult with rapidly escalating injuries and symptoms, and a rapidly increasing level of disability, I was diagnosed as having an HMS -probably EDS hypermobility type. Initially I saw every injury and pain as ‘because of my EDS’ – my condition that was genetic and therefore always going to be with me, and was responsible for taking away my health and my independence. Everything that happened was further evidence of my EDS and the very fact that EDS is genetic meant I saw no end to the symptoms and no chance of improvement: because there is no cure for EDS.

Over time, however, I discovered that with the right input (the right meds, pain management tools, exercise, lifestyle, pacing, and more) things stopped spiraling out of control. Limitations I thought were forever turned out to be temporary, and limits that I thought meant I could never achieve turned out to mean I could achieve differently. That, in essence, my EDS reduced the ability of my soft tissues to cope with stressors/forces, and delayed my healing. But that didn’t automatically mean ever increasing injury and pain. By learning what my body could cope with, I could start to live more within those limits and begin to strengthen without injury – or at least, with fewer injuries, slowly increasing my body’s ability to cope and expanding those limits. I also started to have more sensible recovery expectations for injuries and more effective recovery strategies.

So now, instead of seeing every injury as “because of EDS” I think "hmm, I need to strengthen those muscles a bit before doing that again" or "I won’t try that again when I’m this exhausted" or "until I'm stronger, I really ought to support the joint for that activity"or "I overdid it a bit there!" - each of these injuries comes with a little piece of my life's jigsaw puzzle that will help me make better decisions in the future. And carries with it the hope that I might be able to avoid a repeat. As time has gone by I have been able to build strength and re-try things that previously caused injury – and found that I can now cope with them!

Yes, there are many things I suspect I will never be able to do...but my views on that change over time. 6 years ago I was sure I’d never be able to run a business or dance – my levels of injury and pain were just too high. But that is exactly what I am doing now. True, I do both differently, but I still do them.

I have also learnt not to blame myself for my injuries (unless I did something I knew would cause injury – and then I’m only repentant if it wasn’t worth it). I know that my EDS makes it easier for me to get injured, and my ease of injury seems to vary depending on strength of muscles and ligaments, fatigue levels, stress, nutrition, hormones, level of symptoms from postural orthostatic tachycardia syndrome, previous injuies, illness and more (this isn't necessarily scientifically proven fact, just my observation of myself). Some of these factors can fluctuate massively. No way will I always get things right, but I’m loads better at getting it right than I was, so I count that as a win. And when I do get an injury, well, it can’t be helped…and that’s a bit more that I know about my current limits.

If I am unfortunate enough to experience a major injury, illness or life change that interferes with my HMS management, I am under no illusions about how much this could change my physical state and abilities. Should that happen, I hope I will be able to find the strength to continue this process of learning what my body can cope with at that point in time - and how to give myself the best chance of maintaining or improving that level.

So overall I view my EDS as reducing my connective tissues default level of resilience rather than as the cause of all my injuries. This means I have to be more aware of what I do and how my body responds, and keep as strong and healthy as I can to maximise my resilience.

It helps me respect my hypermobility, but not to be afraid of it.

It works for me.

(Note: for more information on hypermobility syndromes see hypermobility.org - the website of the Hypermobility Syndromes Association, which holds the NHS Information Standards quality mark.)

Saturday, 9 July 2016

Chronic pain, fatigue, and lessons from an insect bite.

I live with pain and fatigue on a daily basis. It is my normal.

A normal which can be pretty unpleasant at times, but hey, you deal with it and find ways to live a good life alongside it.

But when someone starts complaining about a one-off ache, or making a huge fuss over a sprained ankle or other temporary injury it can really get on my nerves. That's like normal daily stuff for me and yet they make SUCH a fuss!

But this last few weeks I learned a lot..... 

It turns out I am slightly allergic to bites from...whatever it was that bit me. 3 bites in the last 3 weeks - which all turned into huge welts - 9cm's long and itching HORRIBLY.

It's not something I am used to, and it was awful! I couldn't sleep, couldn't concentrate, and kept searching for something - anything that would help. I posted on social media and asked friends for advice. I even saw a medical professional (pharmacist) 3 times.

It wasn't my normal. It wasn't something I was used to. I didn't have the skills or knowledge to enable me to take a wise course of action - take the right meds, have a sensible expectation of duration and an arsenal of coping techniques.

There are people out there who deal with allergic itching on a regular basis - to whom my desperate rants and medical enquiries over a simple bite must have seemed pretty pathetic.

But it's OK that I didn't know how best to handle it because it wasn't something I was used to.

I need to remember this when someone else has an injury/illness that isn't their normal. Just as I wanted support, help, a bit of sympathy and chocolate to help me through, They are entitled to the same.

We are allowed to struggle to cope with symptoms that aren't part of our normal.

All of us.

Not just me.

Tuesday, 5 July 2016

Taking disabled access at face value.

When going anywhere new I do a lot of background work. I never take 'it's accessible' at face value.

Pre-disability I knew that most places were accessible because the law said they had to be, and one sees 'accessible entrance' signs, and 'accessible parking' signs all over the place.

Now I have years of experience of 'accessibility' that isn't accessible - from "it's only 1 step" to "our disabled customers don't usually go to the bathroom on their own, so not being able to open the door from the inside when using a wheelchair isn't usually a problem." (see 'Toilet Traps')
Add in heat intolerance, limited arm strength, etc, and the only way to be sure I can achieve what I set out to do, is through a whole lot of research - which takes time, and a lot of energy. Frustrating when I don't have much energy to spare.


Today I needed to drop something at a local small business. They said they were accessible. I didn't want to investigate. A little personal rebellion against the huge effort this process usually takes.

So I didn't investigate. I just went. No further checks. Flying by the seat of my pants and hoping for the best.

...actually, I had a back up plan of "If it's not accessible I'll stay in the car and call them, and they can collect it from me." - to risk an adventure without a back up plan is a step too far for me. 

You see, the problem with rebelling against the need to personally investigate accessibility for every venue I go to (often several phone-calls, emails, plus googling), is that if it goes pear shaped, the only person who it's really going to affect is me. So if I'm going to risk it, I have to know that the cost won't be too high.

The result:

I arrived to find 1 disabled bay. Occupied.....oh hang on, there's a second one the other end of the row, and really near the ramp! Good.

I got out of the car and into my wheels.....Oh. The ramp might be close, but the dropped curb to reach the ramp is 10m's away - but on the plus side, it exists.

So I wheel away from the office, up the dropped curb, back to nearly where I started from, up the ramp and to the doors.

Heavy doors.

Very heavy doors that open outwards. I always find it harder to pull a door open than push it.

I managed - tricky but doable.

I'd made it into the lobby. Oh blast. More heavy doors. And no doorbell or anything to call someone. Doors behind and in front - well, I've made it this far, so let's go for it.

Hoik

Done it. Through the door and at reception.

Items dropped off. Success.

Turn round....door.

I would like to say I was sensible and got someone else to open it.....but...when I'm low on energy, thinking up sensible solutions and explaining them to someone else is actually really difficult - even for simple solutions like asking someone to open a door for me.

What actually happened is that I opened the 2 heavy doors again without help. After which point I realised that I'm going to have to be a bit careful with my elbows for a while - I don't think they appreciated it.
And now I'm home. Mission accomplished, and I didn't do any planning.

Part of me is relieved and pleased. I did it. I went somewhere new without any advance research beyond 'is it wheelchair accessible'. For a small business it was delightfully accessible in comparison to many experiences I've had.
But part of me (including my elbows) is disappointed and frustrated. It was so nearly fine. But I'm kicking myself because if I'd done my research I would have known about the heavy doors, and arranged for staff to open them for me. And if I'd done that, I wouldn't be paying the price now.

It's a very strange feeling - these opposites mixed up inside. But perhaps the main things I have carried away from this are:
  1. Sometimes I can get away with not planning, but there is likely to be consequences.
  2. The level of planning I do normally isn't excessive or paranoid, it's just sensible. 

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)