Wednesday, 18 January 2017

Living with a variable condition - A shopping analogy.

What's it living varying fatigue and pain levels?

It's like trying to shop with a limited budget, when prices can change (usually up, sometimes down) at any time, without notice. Oh, and the budget can change without notice too.

You often have to abandon items or switch items for cheaper/lesser alternatives. The luxuries might be first to go, but even essentials can become priced out of reach. The only other option is to borrow money at extortionate levels of interest.

At that level of interest, borrowing has to be a one off thing for emergencies and special occasions. You'll go bankrupt if you keep borrowing every time the prices go up or budget goes down part way through your day.

The most important skill becomes being able to change plans without warning. Being able to adapt around whatever is happening and to prioritise so that you can a) afford your shopping and b) you keep the right items.

In the context of living with a variable chronic condition or disability, the shopping list becomes a To Do list or schedule, and the energy 'cost' of any activity will vary, as will the energy 'budget' available, due to a range of factors.

These factors will vary between people. Some of mine include: how well I've paced, hydration, temperature, what I've eaten, whether I've been able to exercise regularly recently, hormone levels, amount of sleep/insomnia, needing to do an unexpected task (anything from clearing up a spilled drink, to a journey taking longer than expected), or the body fighting an infection.

Bearing in mind that the 'right items' will also vary (sometimes personal hygiene might be the most important, other times socializing or doing something that helps mental health, other times physical health or exercise might take priority) this process is pretty exhausting and turns a simple shopping trip into an epic lateral thinking, problem solving challenge. It's not just the very limited energy levels that are the problem. It's the variability that makes life a constant balancing act of decisions, and makes every day a step into the unknown.

The overall effect means starting the day with a plan, in the certain knowledge that the plan will need to change. Perhaps cancelling activities, or tweaking activities to reduce their cost (like eating smaller meals - because digesting takes me a lot of energy, or using dry shampoo and baby wipes instead of a shower, or lying down for a conversation.)

These changes of plan are the only way forward - the alternative is to run off adrenaline and then crash out. This might look fine from the outside because the crash tends to happen behind closed doors, when I've relaxed, so others often don't realise the toll it's taken. Crashing out takes far longer to recover from. The more I push, the bigger the crashes and longer the recovery. Trying to keep pushing through my fatigue hospitalized me for 5 weeks. Totally energy bankruptcy. It's taken years to get back to close to where I was pre-crash. I really don't want to repeat that!

But sometimes things can't be abandoned - perhaps I'm out and can't go straight home, or it's an emergency, or a special occasion. Then I need to do what I can to reduce debt. For me this will include: rehydration salts, lying down whenever I can (park benches, quiet corners of shopping malls, the floor of the train, the back seat of a car) eating little and often, accepting help, periods of zoning out and not talking to anyone, and generally pacing. And then taking a day or more afterwards trying to spend as little energy as possible/spend energy on things that will improve long term energy like nutrition,exercise, and pacing. Then the 'spare' budget at the end of the day can go towards paying off the debt - i.e. getting myself to a point I am less symptomatic and more able to function.

At times I've had to reassess and rearrange my whole lifestyle (career, exercise, social life, diet etc) to get things back within budget. It felt horrible, like a failure, but it turned out to be the best thing I could have done, and something I now see as one of my most precious achievements - why? because by having a more flexible lifestyle I've been able to live mostly within budget, and that has triggered a slow increase in my budget over time. Things I thought I'd given up for ever are now becoming possible again.

I rarely (if ever) get my budgeting spot on, but getting it 'more or less right-ish' most of the time, and taking the time to recharge properly if I've gone totally over budget has made a huge difference to my overall energy levels and ability to do things.

The irony is, that the process of making sensible decisions so that I stay within energy budget also takes energy! Thankfully, in my experience, the energy saved far outweighs the energy it costs - and it's got easier over time, although I don't think it will ever stop being a challenge.

A worthwhile and rewarding challenge, but a challenge nonetheless.

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?


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.


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.


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
  • 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.