Tuesday, 23 February 2016

High or low Beighton score - what does this mean for someone with a hypermobility syndrome?



It's Hypermobility Syndromes Awareness Week - a national campaign run by The Hypermobility Syndromes Association.
One of today's facts was this:

This is really important.
This misunderstanding delayed my diagnosis (and therefor delaying appropriate treatment/management advice) until I was a 24 year old wheelchair user - despite symptoms being obvious since I was a young child.
You see, my score is max 1/9 - I can bend over with my legs straight and touch the floor. Sometimes. But I cannot do any of the other 8 moves that the Beighton score uses.
And yet, most major joints slip out of line causing severe pain, instability, and making some tasks impossible. I also have POTs due to floppy veins, and some gastro-related issues -all of which point to my having a heritable disorder of connective tissue (probably EDS hypermobility type, possibly JHS - but as treatment/management is the same, I don't mind which label people use).
At the same time I know people who would score 9/9 and yet have no health problems.
So any fellow bendies who have a low score, please don't feel you have no right to be affected badly, or are 'making a fuss about nothing' when you need help for symptoms. And you who score highly, do not fear that you must be worse because of your score. The score has no bearing on severity of symptoms.
Any medical person reading this: PLEASE don't dismiss hypermobility syndromes as a possibility just because of a low score. Instead consider whether any joints are unstable or hypermobile - such as shoulders, hips and feet (which the Beighton score doesn't assess), and also where the instability does not manifest in a way that the Beighton score recognises (such as my knees don't bend backwards -they bend sideways and rotate on the shin bone - trust me: this hurts and is highly inconvenient when trying to walk!), and consider hypermobility based on the person in front of you, and not on a very blinkered, and outdated concept.

For more information on diagnosing hypermobility syndrome see the HMSA's website hypermobility.org
To become a member (including professional membership), see here: hypermobilityshop.org
For stickman resources related to hypermobility syndromes, see: stickmancommunications.co.uk/Ehlers_Danlos_and_HMS

Tuesday, 16 February 2016

'Small Business' woes

Running a small business comes with its unique challenges.

A big challenge for me is trying to check my own work. It's so easy to see what I think I wrote/clicked/set up on the website, rather than what is actually in front of me.

Another one is sales. A very quiet day is scary. But much worse is releasing a new product which you have high hopes for...only for it to make no sales at all in the first day. What if all that investment is wasted?

Yesterday I launched some new products:

Car signs (6 designs in total)

A 'do not disturb' door hanger



And a 'invisble disability' badge for those with mobility issues.

I sold several badges on day 1. Phew! Now worries there.

But I didn't sell a single sign or door hanger. Uh oh. What if they are unsaleable stock? - OK, so I know it's only 1 day, and I'll sell some over time....but 'no sales' when released does not indicate a best-seller!

As I tried to figure out how to make at least one sale, just so I'd know it wasn't a failure, I got a FB message:

"I can't add this sign to my shopping basket. Have they sold out already or is something wrong?"

FACEPALM!

I'd forgotten to set them as 'for sale' in the back office!

Now it's sorted. And I've made a sale.

I can stop panicking.

And next time I will triple check that setting!

Thursday, 4 February 2016

When brain fog clouds my words

Sometimes brain fog scrambles my dictionary, resulting in random words being inserted into otherwise sensible phrases. Or makes it vanish entirely leaving me to mime the relevant thing.

I'm not talking about those times.

I'm talking about the times I can say whole sentences, which are totally relevant to the conversation, but my ability to process information, and to draw on my own memories/ideas/experiences is missing - I cannot give a considered response.

When the views I state aren't what I really think - like the difference between a knee-jerk reaction, and a 'have sat down with a cuppa and had a good think about it'. Only more so.

In that moment I am unable to do anything to improve my ability to say what I mean.

When discussing the weather it doesn't matter.

In a business context, I can usually get away with it. Those I do business with know I have complex medical stuff going on, so I say "I'm sorry, I can't process what you are saying, could you drop me an email or call tomorrow?" And I have never had them argue, just smile and say 'OK, I'll be in touch'.

But when speaking to a medical professional it is downright scary. And being anxious about the likely misunderstandings can make it even harder - as can the frustration of seeing that there has been a misunderstanding but being unable to find the words to address it.

For example, they suggest an exercise that might help. and my response might be very negative. I sound anti-exercise (which is essential to manage my conditions, but also challenging) - but actually I just can't articulate myself well enough to express my concerns clearly...in fact I probably can't even think of my concerns clearly...I just know that the suggested exercise rings unspecified alarm bells...but until I have time where my thoughts are clear, I won't be able to work out whether those 'alarm bells' mean 'tried it, disaster,' or 'proceed with caution, concentrate on using right muscles' or 'try alternative' or 'hurt once, but you are stronger now, so it's probably safe to try' or 'current injury so not possible now, try next week'. So what I say will be "no". A no for which I cannot give good reason because my thought and spoken words have failed me.

It feels like my explanation is an approximation of what I am trying to say, but not accurate. Like a photograph that is out of focus, so you have to guess what half the things in it are.

So I say "I'm sorry, I'm not explaining myself well"

The responses:
"Oh, don't worry, you are doing fine"
"It's OK, I understand perfectly"

Attempts at reassurance, perhaps? - but it is not reassuring. It is totally ignoring the message I am trying to send.

How can you understand what I have not said, and right now, I cannot say? I KNOW that my explanation did not reflect my reality, so how can you say you understand it? I didn't make that statement out of an irrational worry or a lack of self esteem or such like. I said it because it was true. And because I need help to find a way that I can communicate accurately so that you can understand, and we can come up with the best plan to move forward. I said it because I need you to know that my words today have only been a vague indication of my situation.

Instead I am left knowing that there is a good chance that my treatment will be decided on misconceptions and misunderstandings. It's disheartening and scary.

The responses I want, and need are:

"Is there anything that would make it easier for you to explain?" - For me, (with POTS), being able to lie down for 5 minutes somewhere cool can make a big difference to my clarity of thought. Or perhaps writing instead of speaking would help. Or even drawing a diagram.
Or could I have a list of questions in advance of an appointment so I can write my answers when I can think clearly?
Or "This is what I have understood from your explanation so far...Is there anything you think isn't right?" but be prepared -  I may not be able to explain the bits that aren't right. But at least I can point out questionable parts so that the professional is aware that they are approximate, and can try to get clearer information another time.

So if I ever tell you I'm too foggy to explain something, please don't reassure me that I'm fine. Or that my explanation is fine. Instead, help me find a way forward, a way for me to help you understand. Even if it involves trying again another day.