Thursday, 12 January 2017

I can get into my house!

As some of you will know, I will be moving house in a few months, from a ground floor flat to a bungalow - which we are currently in the process of completely renovating.

Up 'til now work has been of the 'destructive' or background variety. Starting with removing carpets smelling of cat wee and wallpaper, on to removing fixtures and the odd wall, progressing through chiseling holes in walls for new cables and pipes. Then building the odd new internal wall and putting in plumbing.

And now we are at the exciting stage when new stuff is going in, holes are being filled and a home is just starting to emerge from the building site. Still got weeks and weeks of work, but I had to post today because...the new doors are in!

I've been a bit too flollopy to leave my flat today, so I can't see them, so my builder sent me photos (because he's awesome)
 

Look carefully.

Can you see it?

Can you see the bit that's exciting?

LOW THRESHOLD!

The prospect of not having to step over a huge lip to get into the house, and of being able to wheel in and out once we've sorted ramps is just marvelous.

I will be able to get into and out of every single door in my home! EVERY SINGLE ONE!

Sorry if I seem over excited - especially as I haven't even seen them for real yet, but the prospect of being able wheel out of any door I choose - front, kitchen or rear patio, is really rather marvelous.

I haven't been able to do that since starting using a wheelchair 10 years ago. Many wheelchair users never have this luxury. I feel like I've won the lottery.

Obviously I've known I'd ordered level access - but actually seeing these photos made me realise that it is actually happening.

I will be able to get into and out of any door of my home, safely and easily.

Bliss.

Words can't say just how cool this is. So I shall leave it to your imagination.




Monday, 9 January 2017

Stickman talks at NAIDEX, Birmingham

It's official! I (and the stickmen) will be running 2 seminars at NAIDEX this year.

Bridging the Gap: Improving communication between professional and patient.

And

Helping people around us to understand our hidden symptoms and disabilities.

(Click the links for more info)

Both are scheduled for Wednesday 29th March but I don't think the timetable has been completely published, so keep an eye out for the times.

The reasons behind my topic choices are simple:

Bridging the Gap:
I've experienced a lot of medical misunderstandings and mis-communications throughout my life, but with hindsight I can see they didn't only frustrate me, and waste my time and energy, but also the professionals trying to help me. So 'Bridging the Gap' is all about addressing this - a step towards a future where health care professionals are better equipped to create effective working relationships with their patients.

Understanding hidden disabilities and symptoms:
This is full of things I wish I'd been told earlier. Things that helped create understanding and acceptance of my quirks, and made it easier for me to live well with my conditions. Through running Stickman Communications I have realised these are also useful to the thousands of others living with hidden disabilities symptoms. It is a topic so close to my heart that it tends to creep out into everything I do, so unsurprisingly it's taking center stage in this talk at Naidex.

NAIDEX has free entry, anyone (professional, patient, family, carer, random person who is interested) can come to either talk - or even both!

I hope to see some of you there.

Wednesday, 4 January 2017

Hypermobility, reluctance to exercise and the bull in the field

[Note: in this I refer to hypermoblity syndromes. This is written from my perspective as someone with Joint hypermobility syndrome or Ehlers Danlos syndrome hypermobility type, but it is applicable to the joint related aspects of many hypermobility syndromes including other types of EDS, marfan, pseudoxanthoma elasticum, and possibly for other long term conditions too.]

Many people with a hypermobility syndrome react with a level skepticism and reserved-ness when a health care professional (HCP) tells us we need to exercise more or that physio will help.

From experience, I'd hazard a guess that this is often seen by HCPs as:
  • playing the patient role.
  • unwilling to put in the effort.
  • resistant to good advice.
So HCP input comes from that angle - which often creates little progress and lots of frustration.

The key to moving forward might simply be better communication and better understanding of the reasons for the less-than-convinced reaction.

It's worth noting that when the topic of physiotherapy comes up in patient support groups, most often someone who says "physio didn't help me, it made me worse" will go on to say "I swear by pilates/swimming/cycling". Exercise is something they have actively chosen to pursue. 'Playing the patient role' 'unwilling' 'resistant' etc just don't fit.

I treat each new professional I meet with extreme caution when it comes to exercise - even though I love exercise and am a dancer! I will try and explain why.

Imagine you are walking along a footpath through a field. Halfway through, you realise there's a bull in the field, and it's heading straight for you. At speed.
You leg it, and make it over the gate - a bit bruised and shaken, but OK.

Another day you reach the same field. You remember the bull. You look carefully. You can't see it. You reckon it should be OK, and you really want to reach your destination. So you follow the footpath again. Half way across the bull appears from its hiding place - this time you aren't so lucky and end up breaking your ankle as you leap the gate.

A few months later, mostly healed, you are on a walk with a friend who doesn't know your history, and who wants to show you an amazing place they've found. On the way you reach the bull field.

You say "I can't go through there, I'll get injured!."
Would you be reassured by insistence that you won't get injured? - No. How can they know that?
Would you be reassured by "It will be fine. Trust me" - No. It wasn't fine last time - you fell for that thought last time.
Would you be reassured by "I know lots of people like you who've been through with no problem"- No. Because your experience is that you have had problems - there was a bull hiding in the corner!
This type of 'reassurance' response just creates friction and frustration all round. A refusal to proceed based on logic and real life experience, butting heads with a dogmatic insistence that you have to. As a patient this makes you feel like you have 2 choices: knowingly risk injury/worsening symptoms lf in the forlorn hope that they might realise you were right and start listening; or stand your ground and have essential help withdrawn - there is no way to win.

But what if they said "What happened?" and then listened to your story?
What if they then said "Erk. That really sucks. I wonder if we can find a way through a neighboring field. Or we could go along near the fence so we have lots of time to hop over if the bull appears, or we could stand on the gatepost can see into the bull's hiding place"?

Putting this into an exercise context, replace the bull in the field with physiotherapy-induced worsening of symptoms, or exercise related injury. A reluctance to leap into whatever exercise is given is a sensible result of past experience. It demonstrates a wish to learn from past experience and not repeat the same mistakes.

HCP comments like "It will be fine." "Trust me, I know what I'm doing" are simply not helpful. How can you avoid a repeat when you don't know what the issue is? - and if your patient is anything like me, they will have had first hand experience of "it will be fine" promises going very pear-shaped.

The key to progress is talking about the past experience. Finding out what previously had a bad effect (and what worked) and coming up with possible solutions - together. And honing those solutions over time, using discussing rather than dicatorship, so that the patient becomes better equipped to make their own self management decisions in the future.

True, all the physiotherapists I've seen over the years have made mistakes at some point (given exercises that didn't help, or given unhelpful advice based on false assumptions) - but the good ones listened to me, learnt, and went on to make a real difference in my life - helped me learn to avoid, outwit and outmaneuver the bull in the field.

Bull avoidance tips:
  • Use a joint support or taping during exercise - so struggling joints can be strengthened without injury/strain.
  • Work to strengthen the struggling joint first. (backing off from knees initially, and working on a stronger core, hips and butt in sitting and lying means I can now safely do more to strengthen my knees and ankles.)
  • Try a different exercise that works the same muscles - perhaps in a different position. Like in lying instead of sitting, or kneeling instead of standing. 
  • Double check the correct muscles are being used. Gentle pressure really helped me activate the right muscles and get around my poor proprioception issues. (I often found myself going through the motions of an exercise from one flop position to another flop position with minimal control - It was only when I realised that I had to control the whole movement that physiotherapy started to help me. 
  • Address 'what if' concerns with plan B, C, D - and however many versions are needed. Even if one plan is 'you stop that exercise and send me an email/leave me a message/tell me at the next appointment.' - HCPs don't need to predict the future, they just need to respect my concerns as valid. I can afford to take more risks if I have 'emergency back-up plans' in place.
  • 'Try this and see how you get on' is a great starting point (combined with alternative plans for if it doesn't work out well).  (In my early days I'd often go all out and force myself to reach physio targets despite the fatigue/pain - then injure myself doing something normal afterwards because I'd overdone it.) Using an exercise form like the one below gives a straightforward, clear way of communicating about any 'bulls' that are encountered, and empowers the patient to make decisions and adapt their exercise regime to work better for them, rather than feeling like they have a choice between forcing themselves into injury or giving up completely.
This form is available as a download and in printed form from http://stickmancommunications.co.uk/for_Medical_Professionals
  • Encourage stopping an exercise when it can't be done perfectly. I tend to push myself too far as I try to prove to the HCP that I'm trying. Exhausted flop might tick the 'reps' box, but it's not going to be of long term benefit - it sent me backwards.
  • Look for ways to convert daily living stuff into exercise - that way we can use limited energy in a more constructive way. For example sitting on a wobble cushion for 5 minutes while on social media. Or squats or heel raises while brushing teeth.
  • Have ideas of exercise/sports that might be accessible to people with, for example, limited mobility or fatigue - such as dance groups that are adaptable and genuinely inclusive (like 'dugout' in Oxford), seated exercise classes, swimming, wheelchair basketball, badminton, rock climbing, pilates with an adaptable and knowledgeable instructor, disability athletics clubs. And whatever else you can think of locally - remember, people don't have to be wheelchair users to benefit from wheelchair-based sports, especially when the non-wheelchair version is not possible for them.
In short, if we seem reluctant to exercise, please take the time to find out about the bull in the field, and then work with us, using our expertise in 'how my body reacts' to create a way forward.

.

Friday, 23 December 2016

Disability, innovation, and mattress moving.

My older sister currently lives abroad, and she's staying with me for Christmas - we're having a lovely time so far, but this blog is about preparing for her arrival.

You see, the 'space' where her bed (mattress) needed to go was actually a stack of boxes full of stickman products. Too heavy for me to move. And with no-where else in my flat to put them.

But it's OK. I had a solution: My 13 year old niece, K, (my brothers daughter) loves helping me out with stuff, and my older sister has a storage container not far away to which I have the keys. K can carry the boxes to my car, we'll drive to the storage place, then K can unload the car into the storage container.

Oh, and while we are there, we'll collect the mattress from storage for my sister to sleep on.

Sorted.

All went fabulously.

Until we realised there was no possible way for K to lift a heavy, sprung mattress from the container, over a few metres of muddy gravel, and into the boot of my car. Which was already as close as it was possible to get.

I was barely staying upright when fully braced (including knee pads) and leaning against the car. No way could I help carry it using any lifting technique I'd previously encountered.


Never fear! We invented the 'tortoise' transport method!


It worked rather well.

And actually, carried like this it wasn't nearly so heavy. And was bizarrely comfortable.

True I had a few interesting aches afterwards, but come on, admit it, the tortoise transportation method is awesome!

😆😆😆😆😆

Friday, 16 December 2016

Christmas teamwork with a stranger

It was a beautiful moment.

I was browsing the pyjama* section looking for a gift. Next to me was an older gentleman - doing the same.

We smiled at each other.

"I'm so indecisive!" says the gent. "I hate Christmas shopping, I never know what to get! I don't even know what size she is!"

"Well...I'm a size 10-12, if that helps? And with PJs*, I prefer them a bit big rather than a bit small."

"Hmm. I'll probably go for this size [y] - she's a slightly different size to you."

We continue our browsing along the PJ* section.

"I just don't know" says the gent to me, looking slightly helplessly at an item.

"Well, if I can help, let me know."

We continue our searches. I spot one I like, out of reach on the top line of hooks. "Could you see if there's any size [z]  in that one for me?"

"Of course....why are they always out of the size wanted?!..hang on! Here's a size [z] - and a size [y]"

"Me, That's perfect, thank you!" I take a closer look at it.

"What do you think...this ones a bit more fussy.....I think I prefer that one."

"Well, does she wear short sleeves or long sleeves?"

"Short"

"Definitely that one then. And the best bit is, if she doesn't like it, you can blame the random woman in the shop!"
[Image description: stickman carton of a woman in a wheelchair holding a pair of purple pyjamas, laughing with a standing stickman with grey hair and a beard, holding 2 different pairs of pyjamas, With a note saying "items have been changed to protect the recipients surprise".]
We laughed, thanked each other, wished each other a happy Christmas, and went our separate ways.

*items have been changed to protect the surprise of the recipient.


Thursday, 15 December 2016

What is a 'Good Day' with a chronic health condition?

Good days are strange creatures.

Yesterday was a bad day.

After a long period of 'annoyed' POTS, and a sleepless night my POTS symptoms were severe. By severe I mean every time I spoke my heart rate went loopy. I couldn't concentrate or function. Coordination was pretty non-existent. Conversations sat up weren't happening. Standing with any sensible level of stability wasn't an an option.

I had an essential appointment - which I got through by lying on the waiting room floor, and then lying down during the appointment, and the rest of the day was for recharging - because nothing else was a realistic option.

Today is a good day.

It is a good day because my POTS symptoms have reduced to my normal. I've been able to do 2 short stints of work and a few other bits and bobs. I actually felt properly alive this morning. Clear headed. And after a day like yesterday, a period of mental clarity is the most beautiful thing imaginable. Of course, normal living stuff will create symptoms, and my energy reserves are very low, but trust me when I say that in comparison, today is just fabulous. If I pace it right and I move often enough and lie down often enough there's a good chance I can periodically get back the clarity of thought throughout the day. I even had a shower, and recovered from it within an hour!

It is marvelous to feel SO much better than yesterday.

True, my left arm is grumpy. Got a bit of nerve trouble from my bendy elbow annoying the nerve, and something going on at the shoulder. The result is that my left arm is moderately useless and nerve-achey. My pelvis is also grumpy. And I still have all my normal symptoms, But it's still a good day. Because I can work round these and manage to achieve various little things that don't aggravate those areas too much, and without my symptoms putting a total roadblock in the way.

If I tried to go Christmas shopping today, I think it would be a bad day. My symptoms would create direct barriers to what was trying to do.

Thinking about this, perhaps, for me, a 'Good day' is where I can match my abilities/symptom level to a constructive 'To Do' list that results in me achieving things without unacceptable escalation of symptoms.

I like this thought. Because it means that if I plan carefully, it gives me the potential to have a good day, even when I might be really quite symptomatic in some areas.

Here's to managing to complete today's 'good day' by keeping my activities within my limits! Which means that I am now off for a lie down.

Monday, 5 December 2016

Highlights from the OT Show

As usual the Occupation Therapy show was a great event. We've made lots of great new contacts, and also got to meet a few old friends (Jo Southall and Jen Patchett who popped in to say hi, and Kim Clayden who came and helped out on our stand) and met with old-new friends who I've known onlinen but not met (like from Burning Nights CRPS).

Rather than boring you with details, here are some random bullet point highlights:

  • Many of the OT's who visited us had a special interest in mental health. The conversations started almost universally with them giving an apologetic "Well, I work in adult mental health, so this probably isn't..." so I got to watch their faces light up when they realise that yes, we really do have lots on offer that can help and support adults with conditions that affect their mental health!
  • My hotel room was cold. Some of you will know I'm heat intolerant - so I collapse/get drunk when I'm too warm. The average hotel room is too warm. So discovering that not only could I open the window, but also turn off the radiator completely, was just heavenly!
  • Our location was near the exit to a lecture hall, so we would get periodic crowds of people - at times we'd have so many people at the stand that the ones at the back were being handed leaflets through the crowd!
  • This time I decided to have a smaller table so a short padded bench could fit alongside it - just long enough for me to lie down on - so I could get lots of short 'horizontals' throughout the day - essential for my POTS management. It turned out to have the added bonus that by the end of the day I got extra visitors because I had a seat.
  • Our stand was next to the EHOB stand. They specialise in products that relieve pressure sores. I'm fortunate that I don't have a problem with pressure sores, but I was most interested in their foot/ankle products. I have floppy feet and ankles - and consequetnly a lot of night-time pain as the pressure from the mattress can cause pain, as can allowing the foot to flop unsupported. But I also need to be able to wriggle my feet and legs - making standard rigid resting splints unlikely to help. These very lightweight inflatable, flexible boots might be the solution I'm after! So I will be trying a pair out for the next few weeks and will blog about how I get on with them.
  • I was interviewed on Thursday by Jack March for the Physio Natters podcast about physiotherapy and hypermobility (which might be aired in December, or possibly January - I'll let you know). I didn't do a great job of explaining (but bearing in mind it was day 2 of the show, I was actually doing really well to be able to put sentences together!) so I'll probably try and publish a blog that goes into some of the issues we covered in a bit more detail.

But this was my favourite moment:

The show entrance is a very wide ramp. long enough to get a good speed up. At the bottom of the ramp you had to stop to get your badge scanned every time you entered. Having to stop at the bottom takes the fun out of ramps. The toilets were outside the show and so was food - so I lost count of how many times I went out and then back in to the show, and had to curb my ramp appreciation to get scanned. Until the last time. It was quieter. The scanner chap caught my eye as I reached the top of the ramp. Instead of preparing to stop, I lined myself up...

...and let out a whoop as he successfully scanned me in while I sped past him, roller-coaster style.