Sunday, 23 April 2017

Pacing: Swap, don't stop.

My motto for today is 'swap, don't stop'.

It's from our 'Pacing, handy hints' poster, and it's been just what I needed today.

Both my pain and fatigue levels are pretty high. What I feel like doing is curling up on the sofa and not doing anything.

And it's totally right that I do need more rest today, but actually, today, for me, good pacing isn't about stopping everything. It's about swapping.

So I got up, and then rested and watched some TV. But I keep swapping between watching TV and doing little tasks. Or more correctly: sections of tasks.

Here are some of my accomplishments so far:

  • tidying my bed
  • stretching
  • sorting the washing
  • putting a wash on
  • tidying my bedroom floor
  • stretching
  • sitting on a stool to empty the dishwasher and put everything onto the side
  • hanging up the washing
  • writing this blog


I think my next 'swap' break will be putting the clean dishes away into cupboards. You see, I find pacing for when I'm this fragile much easier if I split the task into it's small sections before I start. So when I emptied the dishwasher - I had already decided that I would phase one (empty dishwasher) separately from phase 2 (put clean dishes away.) This way I'm much less likely to get caught up in the task and overdo it.

And in between each task I have down time. I'm currently watching Ellie Downie's gymnastic amazingness at the European championships on BBC iplayer.

But I'm also being careful to make sure that my down time isn't flopping into positions which aggravate my conditions - but is well supported. (i.e. lots of cushions!)

So while some days my 'swap don't stop' is about switching between tasks, today's 'swap don't stop' is about switching between rest and gentle movement rather than spending the whole day flopped.

And so far it's been a success. Pain and fatigue aren't escalating, but at the same time I feel a great sense of achievement because despite the symptom level, I am achieving lots of little things that become bigger things. I just have to keep remembering to stick to very short tasks/sections rather than trying to complete larger tasks in one go and then crashing out - and having to stop entirely.

I've already achieved far more than I thought I'd manage all day with this symptom level. But the best bit is that I've done so without worsening my symptoms.

Thursday, 20 April 2017

Pain self management: First choice or last resort?

As regular readers will realise, I love self-management and it's really helped me live well with my conditions. Along the way I've met many others on a similar journey, and one of those is Pete Moore of the 'pain toolkit'. I'd highly recommend popping across to see his toolkit resources. Here's a few comments from Pete about his experience and the work he does.

  

Who is Pete Moore?

You can read all about me and what I do here (hyperlink https://www.paintoolkit.org/pete)

The Pain Toolkit
I started to develop the Pain Toolkit (hyperlink www.paintoolkit.org) in 2002 and over the years it’s become a go-to website for information about pain management. Please come and visit and say hello. On the site there is lots of up-to-date news, as well as pain self-management information for healthcare professionals and people with pain.

Is pain self-management your first choice, or last resort?

With the ever-increasing problem of persistent pain in here in the UK and around the world, educational pain self-management has to be the first choice for both people with pain and also healthcare professional.

According to the Chronic Pain Policy Coalition ( http://www.policyconnect.org.uk/cppc/about-chronic-pain) there are now 28 million people here in the UK living with persistent pain. This figure seems to keep doubling every four years.

What is the answer to solve this problem?

It’s quite simple really. Educational pain self-management needs to be taught to all healthcare professionals while they are in their medical schools when in training and not learnt on-the-job as it is now.
Chronic Pain Policy Coalition

One other problem for healthcare professionals is lack of time to promote educational pain self-management within a timed based appointment. I have addressed this and why I now provide 1/2day Pain Toolkit workshops ( https://www.paintoolkit.org/workshops) for healthcare professionals to give them some extra skills to promote educational pain self-management within timed based appointments.

The Pain Toolkit

I started to develop the Pain Toolkit (www.paintoolkit.org) in 2002 and over the years it’s become a go-to website for information about pain management. Please come and visit and say hello. On the site there is lots of up-to-date news, as well as pain self-management information for healthcare professionals and people with pain.


Wednesday, 19 April 2017

New product: consultation. 'Token' communication units.

For much of the past year we've been working with Bowman Additive Production to create a wearable alternative to our popular wristbands, but which have greater flexibility of fit and use.

The unique unit now taking shape is sturdy, lightweight, washable, durable, latex free and made of non-toxic, medical grade plastic, with a slightly textured, tactile finish.

This is the latest prototype - it's nearly ready to pilot!


(copyright (c) Hannah Ensor 2017)

The unit itself is just under 4cm square and less than 1 cm deep, and allows tokens to be easily slotted in and out.

The unit can be clipped onto a lanyard, keyring, or used on the badge-reel shown.

There will be various tokens available - each one double sided allowing tokens to be changed quickly and easily. Longer term we plan tokens for can speak/can't speak, need help/can do this myself, recharging/recharged - and more.

But we have to start somewhere: the first token set will be 'traffic lights' - the equivalent to the wristbands, with red, amber, and green - and a 'condition management in progress'.

These are the current drafts of the 'traffic lights' tokens.


Prices aren't finalised yet, but the unit is likely to cost around £10, and the tokens £2.50 each (although we are working to reduce these costs, and buying them as a 'pack' will be cheaper.)

We'd love your feedback or thoughts on this 'traffic lights' sets - and on the unit.

Feel free to send feedback as a comment one here, or via twitter (to @stickmancrips) on facebook (to Stickman Communications by Hannah Ensor) or via email (admin @ stickmancommunications.co.uk - without the spaces) But be quick! Production isn't far away......


Saturday, 15 April 2017

Hidden disabilities/symptoms - when actions speak louder than words.

The trouble with 'hidden' or 'invisible' disabilities and symptoms is that they can't be seen.

But this also applies to 'visible' disabilities where there are symptoms that aren't visible. Effects that are hidden to the casual observer.

Like pain or fatigue.

They can't be seen.

"Ah," my thoughts say "but it is visible on my face - you can see from my expression that I'm in pain."

Really? How does an observer know whether it's physical pain, mental distress, stress, feeling down, angry or even just concentrating?

These things can be so obvious to the person experiencing them that it's hard to remember that they aren't so obvious to others.

But there's something that makes it even worse.

And that is 'Actions speak louder than words' - trite but true.

Who else has done this:

You are asked/invited to do something. You say no. They pressure you. You cave in and do it. Then once you are alone in the safety of your own home you crumple - the symptoms you've been struggling to hide and ignore all day overwhelm you as your defences come down and the energy required to 'pretend' runs out. It then takes days to get back to your normal level of symptoms.

When this happens to me, not only am I left struggling to recover and unable to go about my daily life because I pushed too far, but the other person then seems to get even more pushy, ignores my symptoms, insists I can do more if I push myself, and even hints that if I changed my attitude I wouldn't be disabled.






The trouble is that actions speak louder than words. The 'foggly eyes' of a stickman aren't visible in humans. What I communicated was that I could do what I said I couldn't. They didn't get to see the effects. They saw me coping when I said I couldn't. They didn't see me crumple - they saw me upright and functioning. I might have tried to explain my symptoms - but I also hid them. So because actions speak louder than words, without meaning to, I 'told' them I had done it, and was OK.

I can't expect people to understand my normal if I don't let them see them my normal.

I don't mean I think I should go round trying to make every symptom constantly visible - that would just be weird and kinda depressing.

But I do mean I pace and take breaks when I'm with friends - go and sit in a quiet corner, I lie down randomly. I tell visitors it's time to leave when my symptoms are escalating. And it's very rare that I say 'I'm fine' to someone if I want them to understand my normal. I can't blame them for not understanding things that I've hidden from them.

Yes, this can be tough to start with - as the people around us have to go through a learning process. There might be awkward questions. There will be 'being different in public'. But my experience is that this 'allowing people to see my normal' has over time enabled me to do SO much more with fewer symptoms - because the people around me make allowances for my normal and don't pressure me into doing things that won't help me.

This is why I started to draw stickmen.

To show my normal in a way that wasn't negative or complaining, so that others could learn my normal, and my quirks that help me to live well with my conditions.

And now it's why I run Stickman Communications.

Because stickmen can make the invisible symptoms visible. They help me explain my normal in ways that are understood and are not seen as being 'negative'- and as a result also help me to stand my ground when something will be too much, and when I choose to do something that I know will push my limits, I'm not afraid to let people see bits of exhaustion, or pain coping techniques.

True, they don't magically solve all issues, but for me they've been a great help.

  
     


     





Thursday, 6 April 2017

An afternoon stroll

Yesterday afternoon I realised I needed to charge my powerchair for a trip on Saturday.

I reached the garage, standing in the warm sun, with the fresh coolness of a spring breeze on my face, and then decided it would be a much better idea to take it for a stroll and test out the local footpaths.





Bliss.

My X8 is now charging, and my OS map of this local area has it's first 'confirmed stile free & offroader accessible' footpaths drawn on :)




Tuesday, 4 April 2017

The importance of sitting properly...

Yesterday evening I was making the most of the mild April weather: Sitting with my legs curled up, on a beanbag, out on my patio, leaning back against the house, wrapped in a blanket, reading and enjoying the cool, fresh air of spring while listening to birdsong.

Bliss.


Until I moved. My sacro illiac joints (SIJ's) (a bit below the dimples at the top of each buttock) had quietly and gently gone on strike. Giving the feeling of being bitten mid buttock at the slightest change in pressure on my tailbone.

Experience says: straighten out, and take the pressure off. But I couldn't stand up from that position, and every move was stabbing! The best option would be to have someone pick me up bodily off the floor - so I could straighten without any pressure on the offensive, butt-biting joints. But I live alone.

I sprawled and attempted to inch my limbs into the right positions, the beanbag complicating matters further.

Inch, wince.

I was struck by the inelegance of my position.

Wry smile, inch, wince.

This could take a while. My legs are getting cold.

What if I have to call a sibling to pick me up? How would that conversation go?
"Hi....you got 10 minutes to spare?....I sat on the floor and my butt fell off, and now I'm stuck!"
"Any chance you can pop round?....I'm sat on the patio with a mis-aligned butt and can't get up!"

The mere thought gave me the giggles. Not helped by imagining the laughter such a call would generate.

Laugh, wince, inch, wince, laugh, wince....breathe!

Did you know that when you laugh your pelvic floor tenses and pulls on your SI joints? I was now being stabbed by each attempt to move, and bitten by each laugh.

Laugh-inch, wince

Hallelujah!

I made it! Legs out in front of me - practically lying down, gently lifting the pelvis - and sure enough my SIJ's returned to normal-ish.

Gonna make sure I sit properly for a bit as the butt's a bit grumpy today, but hey, at least I didn't have to call for back-up!



Thursday, 16 March 2017

Hypermobility spectrum disorder: what it means to me.



[This interview was published yesterday by the HMSA. Copied here in full]

Our volunteer team took the opportunity to ask HMSA HSD Ambassador and Patron Hannah Ensor a few questions about how the changes to the classification of hypermobility syndromes might affect her.

What is your diagnosis?

My official diagnosis is "Joint hypermobility syndrome". (JHS)

Over the years it has flickered between JHS, HMS and EDS hypermobility type, depending on who was writing the letter, and what I'd told them.

So although EDS is listed on some letters, I've only ever been formally diagnosed with JHS.

What do you think you would be classified as under the new system? (see here for an overview of hEDS, and a basic update for clinicians)

From what I've seen, although my Beighton score is low (1/9) the system allows for 'generalised joint hypermobility' regardless of score, which is definitely true of me.

But I only have mild skin issues so I don't score enough points in that section to qualify as hEDS.

So I think I'd be generalised hypermobility syndrome (G-HSD.)

How does your hypermobility affect you?

I have generalised bendiness with instability in practically every joint - and yet my beighton score is low because my knees and elbows don't bend backwards. They bend sideways, and rotate in ways they really shouldn't.

I have POTS - quite severely.

I have reflux and mild issues with a slow gut and a bendy bladder.

And plenty of pain and fatigue (which I almost forgot to mention because it's become so normal for me.)

It affects me every day, every minute. Looking at my life objectively, there is very little I do in the same way as an 'average' young woman - I have had to adapt every aspect of my life, using a wheelchair, being conscious about posture, daily physio to enable me to function, pacing, lying down and moving about to manage POTS, avoiding heat - all sorts of things. It even affects what and when I eat and what I wear.

Does it annoy you that POTS and gastro-intestinal issues are not included in the diagnostic criteria?
It's a bit frustrating, but actually there's not yet enough information on how they are linked. Both POTS and gastro-intestinal issues can have lots of different causes so they can't be part of the diagnostic criteria until they are better understood. Thankfully the new information is very clear that doctors should be aware of, and look out for these linked conditions in someone who has an HSD or hEDS - and there's some really useful management guidance on them too. I really hope more research happens soon, but until then I think I'm in a better position for accessing help with POTS and GI issues because there is now clear, concise, up-to-date information I can refer my doctors to - regardless of whether I'm HSD or hEDS.

Do the changes scare you?

Of course. Change is scary, and as it took me 20 years to get my current diagnosis, the thought of possibly 'losing' the respect that saying 'I have EDS' can get from medical professionals is very unsettling.

What would you say to others who are in a similar position?

I've found it helps to focus on the fact that it said that HSD is not necessarily milder than hEDS - both can vary in severity. And the HMSA 'clinicians guide' (which I've heard a little about) is explicitly for both hEDS and HSD - making it clear that us HSDers can experience the same debilitating symptoms and even the same associated conditions - POTS, gastro, MCAD etc. (once it's published we'll put a link to it here.)

This has never been officially, scientifically acknowledged before, and this fills me with hope that more and more doctors will take HSD seriously. Far more seriously than 'hypermobility' ever was.

And don't forget that charities like the HMSA are on our side - helping to ensure that all of us are taken seriously. They not only support patients but educate medical professionals too. Being Patron, volunteer and HMSA HSD Ambassador, I've seen first hand how hard they are working to ensure that people with HSD are not seen as 'just a bit bendy'. I'm actually doing a talk as part of an HMSA Hypermobility Masterclass on living with HSD for medical professionals that the HMSA is helping to run in a few weeks time. I will be fighting the corner for everyone else with an HSD too.

What will you be doing next about your own diagnosis?

Carrying on as normal.

Treatment for both hEDS and HSD is symptom-based in the UK. I don't need to see someone to officially get 're-classified'. Re-classification is something that will happen along the way if I need to access services/support/advice through someone who thinks it would be helpful to re-assess me. And actually I can expect to be reclassified at various times during my life as my symptoms change - because it is a spectrum condition which can change over time.

And until I'm reassessed I will either use HSD or JHS - not assessed under the new system yet.

And on a reassessment note, I like that this new system recognises that it is a spectrum that people can move about on. Being G-HSD doesn't mean 'definitely not hEDS' - it means 'currently not showing specific symptoms of hEDS - symptoms may emerge later so keep an eye out'. If I become less symptomatic it might change to Asymptomatic-HSD - or if I get more skin related issues it might change to hEDS. If I get less flexible with age, but haven't developed symptoms that class me as hEDS I can slide along to H-HSD (historic HSD) - whatever my symptoms are, I can have a diagnosis that accurately reflects how I am affected and flags up the potentially linked conditions to look out for. It's so different from the previous system that it's a lot to get my head around and will take me some time to get used to! (We'll link to a summary of the HSD criteria as soon as we can.)

How would you summarise how you feel about the new classification and associated information?

Well...

...a bit of "oh help, it's changing" is going on in my head....actually, maybe quite a lot!

But underneath that, having read a lot of the new medical articles in the journals, the new criteria and all the linked information that has been published along side them means that although I don't think a positive effect will be instantly visible, but I think the future is looking up.

So I am taking a deep breath, ready to ride out any initial period of uncertainty, but full of hope for the future.