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.

Friday, 18 November 2016

Why do I find unexpected change difficult?

Dealing with unexpected changes is a challenge most people would associate with autistic spectrum disorders (I love the illustration about it in this article: http://www.huffingtonpost.com/carrie-contey-phd/the-tendril-theory_b_7984160.html ) or perhaps with anxiety. But did you know that many people with conditions which cause fatigue can also struggle with new or unexpected situations?

For me it is because fatigue and brain fog can mean I can't figure out what I need to do, how I can make it work for me, and if I get it wrong, then a) I might not actually manage to do it, and b) my symptoms can escalate horribly.

My ability to cope with unexpected changes varies hugely with fatigue levels and brain fog. Some days even a 'would you like to pop round for dinner' is something I can't get my head around - other times it's an instant yes, because my fatigue is lower so my coping ability is much higher

These are some of the issues an unexpected change of plan can raise:

- I haven't planned my day to save energy for the new thing. I don't know whether I will be able to get through it without majorly upsetting my symptoms, nor have I planned the necessary recovery time afterwards. And I don't know if my schedule will allow for taking tomorrow off.

- Is it within a safe driving distance for me or do I need to arrange a lift? If I need a lift, who is driving and which of those cars has a boot my wheels can fit in? And what happens if I can't cope and need to leave early?

- I don't know if the venue will be accessible. Will the lovely evening stroll have styles or narrow gates? Will the restaurant have step free access and a loo? Will I be able to lie down if I need to?

- I don't know if I have the right kit with me (for example I have different levels of compression wear, and need the full on custom made entire outfit for being upright for long periods with minimal symptoms. So I might need to change my outfit...but do I have the energy and joint stability to change compression wear? - Do I even have the chance to go home and change it?  Do I have enough cooling vest inserts ready? And do I have the right wheelchair/mobility aids with me?)

- I don't know who else is going. I have a handful of friends and family who have become experts: seen me when I'm really bad and don't flap. They know what to do (for example, how to help me realign a wrist, or when to suggest I lie down). And a slightly larger group who mostly get it, but might get a bit freaked out at some things. If a group doesn't have any experts I will need to come up with back-up plans. (Keyring cards help for this, but don't entirely solve the problem) - this particular issue needs quite a lot of brain power and time before an event to sort out.

I have learnt to take several breaths before reacting. It's not the end of the world even if in that split second it feels like it.

The vast majority of these questions have sensible answers which will make things do-able, but it takes time and brainpower for me to work out the answers. If an outing or event is suggested at short notice. ready to happen in an hour, then I may well not be able to go. Not because the trip is a physical impossibility, but because I don't have the time to sort out the things that would make it possible.

So if you are with me when a spontaneous happening is suggested, and I go quiet or am very unenthusiastic, it doesn't mean I don't want to go, it usually means that I do want to go, but need to time to process things first.

So please be patient, and help me find the answers if needed, and give me as much advance warning as possible so I can make sure I am prepared and can make the most of the event.

Tuesday, 15 November 2016

Finding an accessible home

My recent output of new products has been a bit less than usual.

There is a reason for this: I am moving home! I now have my new home, but it won't be ready for me to move in for another few months as it needs a lot of work done to it.

So over the next few months you can expect a few blogs about the process.

Here are a few notes from my recent experience of house hunting:

1. Wheelchair accessible homes at sensible prices don't exist in my area.

2. Logic says most bungalows will work. Um...no. Half the bungalow's where I live either have corridors with tight corners that even my skinny wheelchair can't get through, or...get this...they have INTERNAL STEPS!
Seriously, why go to the trouble of creating a bungalow, only to put a step into the kitchen? Or a step into the bathroom? Just....why? (Ok, I admit, I'm highly biased in favour of level access.)
And that's without factoring in that most of the smaller bungalows have been converted and expanded into the roof - creating 'unusable space'.

3. Before arranging a viewing, ask the internal step question, and check the floorplans to see if you've already viewed one with that layout and found it inaccessible.

4. I started off convinced I wanted a minimum hassle house. Somewhere that was all nice so all I needed to do was move in. All the nicely presented place still needed work! Replacing front doors with low threshold doors, putting in ramps, replacing carpets with laminate/vinyl, widening doorways and replacing the bathroom. So after about 6 months I changed my priorities and decided that buying somewhere that needed a lot of work was more affordable - and more likely to be find-able - because then I wouldn't be paying for things I'd have to replace to make it accessible.

5. When viewing, try out the mobility options you will use in real life: crutches, wheelchairs etc. It's no good getting somewhere which you can walk through, but not with crutches, or not with a wheelchair - when those aids will be needed some days. The local estate agents got very good at lifting my wheelchair over doorsteps - I would get myself through the door, and they'd bring my chair. This way I could make sure my wheels would be able to access all the important areas.

So after over a year of looking, I found somewhere that was both within my budget and could be made accessible. It's a 60's bungalow which doesn't appear to have any works done on it since the 80's - the amount of work that will need to be done over the next few months is phenomenal, but the end result will be worth it. It's going to be tough balancing all the house related work and decisions with condition management and stickman business, but thanks to a builder friend who is taking on the bulk of the work and coordinating with all the contractors I think it will work out.

But perhaps the most significant thing I've learnt so far is just how difficult it is to find a home that could be made suitable fairly easily. My heart really does go out to those with disabilities who have to hunt for rented accommodation which is suitable without adaptation - because rented places will only be adapted if the landlord decides to. 'Uphill task' is, I suspect, a considerable understatement.

Monday, 7 November 2016

The need to recharge.

I've had a rough few days. Fatigue and pain levels have been much higher than usual, and doing anything involving concentration is hideously difficult. I've had to cut right back on how much I've been doing. I'm not quite sure why. Perhaps I'm fighting off a cold or infection, or maybe I've been overdoing it for a while without noticing - or perhaps it's something I haven't thought of yet.

Either way, it makes me feel guilty.

Like I should be doing more, and I'm just being lazy for not.

But no.

If I can't function, then it's OK to rest. It's OK to reduce my activity levels to a level I can cope with, and just do little tasks (or little sections of a task) and then return to resting before symptoms overwhelm me.

So today I am reminding myself: It is OK to need to recharge. It is necessary. And by gently pacing myself and recharging I will return to my normal much sooner than if I try to push through it and exhaust myself even further.

Today I choose to invest in my future.

I choose to recharge.


Sunday, 30 October 2016

Good posture: Is it important?

I've been thinking a lot about this recently.

My regular readers will know that I consider good posture an essential part of my condition management. 

However, recently I've seen blogs, tweets and articles from physiotherapists about how posture isn't important. The first tweets I saw on this topic were sweeping statements that the idea of 'good posture' was nonsense. This view was one I couldn't understand. But there must be a reason that professionals hold this view so I read up a bit on it.

I read various links and blogs - many more balanced than the initial tweets I'd seen, but still talking about how posture was not such a key issue - saying we shouldn't be focusing on a specific position, and perhaps the important thing was movement. (like this blog that someone tweeted - I'd recommend having a read - but bearing in mind the points I raise below.).

Some of them, like this one, made partial sense.... But the trouble is that I can cause all sorts of symptoms by sitting or standing or lying in poor posture - from numb limbs to pain....are they saying that I shouldn't be avoiding these positions?

I was starting to suspect that there might be a difference of meanings between my 'good posture' and the 'good posture' of the physiotherapists I follow on twitter.

Then I saw a tweet mocking the picture below - ridiculing the concept that leaning on one leg could cause problems:
Photo of a young woman standing with her weight much more on one hip than the other, with text saying how important it is not to stand like this.
And I think I finally might be starting to understand the issue.

What I consider 'poor posture':

I looked at this image and thought.....that's hardly leaning at all! I can stand like that without causing joint problems. Is that what the physio world means when they talk about poor posture not being an issue?

I took a photo of myself standing in this OK position (left hand image). And a photo of me in what I call 'poor posture' - what 'leaning on one leg' means to me (right hand image):

I've not previously seen myself in the posture shown in the right hand picture. Now I see it, it's obviously quite extreme, but my pre-diagnosis self wasn't aware that my 'lean' was any different to that of my colleagues and friends (which looked more like the first image) - and I've only just realised how different it is. It's simply my relaxed version of leaning on one leg. This is the position I will sink into if I start by being in my 'good posture' leaning stand, but then get distracted - like by a message on my phone.

It hurts. Not to start with, but the pain grows in the background, and then when I try to move out of this position, the pain hits me. I have to take my weight off my leg and kinda wiggle it before moving otherwise it feels very unstable and the pain can hit excruciating/tearing (I've never tried pushing through to see if anything actually tears). It can also give me various nerve-type pains and pins and needles. Even if I only hold this position for 30 seconds I'm left with what feels like a minor joint strain. 10 hours after taking this photo, my hip is still whinging at me. The longer I hold the position, the worse the after-effects.

This 'flop' is right at the end of my range of movement, relying on ligaments and involves very little muscle use.

This, to me, is poor posture.

What I consider 'good posture':

I dance in good posture. Always. (Except when a joint slips and I have to wiggle it back, but that doesn't count). But I don't always dance in the same position. I dance in 'alive' positions - moments of active and moments of passive, but always ready to move. Total flop never happens in dance because there is always that conscious awareness of movement or being ready to move. I simply can't afford to let joints flop beyond the range I can control - and into poor posture. Good posture is within my range of movement, where I can control it. If I am in good posture I can go from resting to moving without joint problems. If I've flopped, I can't. And over time, my 'good posture' range has grown as my strength and control have improved.

My 'good posture' can be quite extreme too - but it's controlled extreme, and not held for longer than I can control. It might leave me with the ache of well-used muscles, but it has never left me with the 'ligament strain' feeling.
'Good posture' hasn't always included this range of movement - to start with it was a much smaller range. In the early post-diagnosis years I wouldn't have been able to do the 'good posture lean on one leg' in the earlier photo - I would have gone straight to flop level 'poor posture'. By working to stay within the range I could control, and avoiding flopping out of it, I have expanded my 'good posture' range.

Recently I had to leave a dance class after about 10 minutes. I would explain it as "I couldn't maintain good posture". What I mean is: I couldn't keep joints under control. I'd be in a position that is normally OK, then my joints would slip. Not drastically 'out', but enough to require a wiggle before moving or using another limb to move the joint back into a controllable range. It was like there wasn't a middle ground. Either I was actively controlling my limbs - or joints would slip, causing pain, pinging nerves and pulling ligaments.

So I went home. And spent the evening making sure I maintained 'good posture'. My muscles, for whatever reason (probably the extreme fatigue I was experiencing that day plus the extra flexibility that my hormones cause) struggled to control joints, so I had to flop. I couldn't physically maintain the muscle control/tone that my joints seem to thrive with. But being aware how important good posture is for me, instead of crumpling on the sofa then wondering why I'm in so much pain with multiple joints feeling stretched and unstable, I created a supportive 'nest' where I could relax without anything 'hanging off the ligaments' - a pillow between the knees, a cushion at my waist, a pillow keeping my right arm from flopping forward and pulling my shoulder out etc. No position that triggered the sharp, stretching, pulling ligament pain or the pinch of joints starting to move out of 'good' positions. (Note: This 'nest' isn't something I use for long periods - otherwise I would weaken muscles and cause more problems by doing so. But I have found it a useful way of allowing my body to rest when I've massively overdone it, or am ill.)

Is my need for 'good posture' just because of a connective tissue disorder?

In the article linked earlier in this blog it states "Evidence based practice is a game of probabilities and the probabilities are well stacked against posture being a cause of many musculoskeletal problems." - This gives room for issues where posture is a cause. But it also made me think...well, could you argue that although my posture triggers the symptoms, the underlying cause may actually be my hypermobile-ness and connective tissue disorder?

Perhaps all I've written about is just because of my conditions and that for the non-hypermobile population there isn't such a thing as poor posture. I don't know.

I suspect my definition of 'good posture' covers what the physios were referring to as movement that is so important.

Either way, when someone says 'posture isn't important' or 'leaning on one leg will not cause problems' it is only my years of post diagnosis physiotherapy, management advice, and dance, coupled with reading up on exactly what physio's mean by 'good posture' that has enabled me to feel I understand it.

But what about pre-diagnosis, when I 'knew' I was average and healthy? What if I'd read or been told that posture wasn't important by professionals ....how would it have affected me?

I strongly suspect that, if worded along the lines of 'good posture isn't an issue' or 'there's no such thing as poor posture', I would have deteriorated faster and further. Not because there is a set position that is vital to human health, but because my definition of 'good posture' kept me from the extreme positions I can flop into. Which would have caused more pain - and likely more ligament damage. The 'good posture' concept helped me manage and minimise some of the effects of my hypermobility without me even being aware of my hypermobility.

In summary:

'Leaning on one leg' can mean different things to different people - and for some it does cause problems.

I agree that the solution for many (probably most - possibly all) pain-causing conditions is not to aim for a set, rigid, 'perfect' body position.

I agree that learning to move with confidence and strength, and to avoid prolonged static postures is likely to be of much more help than aiming for a specific posture.

But at the same time I would ask any professional reading this to remember that a patient's definitions of 'good/poor posture' might be different to yours. If a certain posture (or total flop position) which the patient calls 'poor posture' is causing them pain or other symptoms, then be aware that if you dismiss the whole good posture/poor posture issue - you may also be taking away a key to their ability to self manage and improve their symptoms.

Wednesday, 12 October 2016

World Arthritis Day 2016 - The future in your hands

Today is World Arthritis Day.

And so, as part of the #WAD2016 campaign "The future in your hands", here is a small part of my story of living with a rheumatic or musculoskeletal disorders.

As a child I was different to my peers - often injured, more easily tired, constant pain and many other issues, but those quirks didn't become permanently disabling until I reached my early 20's.

By 24 I had become a wheelchair user due to severe joint problems and pain caused by a hypermobility syndrome (probably Ehlers-Danlos syndrome) where my joints are too loose, and the ligaments are easily stretched and damaged, although I wasn't diagnosed for another year or so. I steadily deteriorated. By 29, long term sick leave from my Environmental Health career had become formal medical retirement. It was an incredibly tough time - I felt that I had lost a part of who I was.

However, during one of my hospital stays I discovered a talent for drawing stickmen. And it seemed that people understood these stickman descriptions of how I felt much better than my attempts to explain using words. The solutions to my own problems around 'how do I make them understand' became products that proved to be the solutions other people needed too.

So while volunteering for the Hypermobility Syndromes Association - which provided the support I needed in learning to pace, and to respect but not fear my conditions and to get stronger and more acitve (contemporary dance is totally awesome and works fabulously around my physically limitations!) I also found myself setting up Stickman Communicaitons - using my stickmen to help create understanding for others too.

My RMD took a career I loved, but it also gave me a new career - which I love even more.

So yes, I really do feel that my future is in my hands. Both metaphorically and physically!



Thursday, 29 September 2016

Creating Better Communication about Mental Health at The OT Show

Innovative new products from Stickman Communications® that can help people of all ages with mental health conditions to communicate about their needs and how they feel.
Mental health conditions can make talking about anything a challenge – let alone communicating about the condition itself in a way that other people can understand and relate to. Thanks to a recent project with a group of college students who live with anxiety, depression, and other mental health conditions, Stickman Communications® recently released a new range of mental health resources to aid in this area, and samples will be available to view on stand A34 at the OT Show on the 23rd & 24th November (at the Birmingham NEC), along with products relevant to pain, austism, pacing, wheelchair use, fatigue, invisible illnesses and much more.

As is typical of the Stickman Communications® approach, these resources don’t have a medical focus, but rather they address situations and misunderstandings that individuals with mental health conditions want and need solutions to.

The keyring communication cards do not only focus on things an individual wants to say but might struggle with (such as needing to talk, wanting a hug, or needing to explain that they don’t feel able to talk right now), but also on concepts that can be very difficult to explain or are often misunderstood by other people (for example explaining how their anxiety affects them, or what it is like having hallucinations). The cards can also provide prompts for management techniques.

"These cards are incredibly handy and provide a quick way to indicate how you feel or what you need. I find that they are really useful if you want to discreetly make someone aware that you need some extra support. They are also great for explaining what would help on an ‘off’ day."  (Mental health blogger: https://upsidedownchronicles.com )

An unexpected outcome of the project was a poster entitled “Mental Health: Things that can help”. “When discussing things which the students found helpful, it was quite difficult for them to come up with ideas, but the ideas they did come up with were so fabulous I had to create a poster out of them”, commented Hannah Ensor (the creative talent behind Stickman Communications®).


“….[These products] help me cope with my mental health issues because sometimes I sit and get bored and fed up and forget things that I could be doing instead of being bored of my own company and seeing this will remind me of other activities I could do to help with my mood.” (Customer review)
The full range of Mental Health related products can be seen at StickmanCommunications.co.uk/Mental_health - or come along to stand number A34 at the OT show and have a look at the range of unique products - all created by working with people needing solutions to misunderstandings about their conditions.