The chronic illness Christmas card paradox

I received a hand-made Christmas card from a friend I haven’t seen for ages. It gave me such a lift.

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Now I find myself hopefully checking the doormat every day during the run up to Christmas.

Being chronically ill means we’re often lonely. We’re feeling separate from the world that we used to move around in. Every day I check the doormat because a card sitting there would be such a wonderful lift and would help me cope with the long symptomatic Groundhog Day stretching ahead of me. The thing is, it’s hard to write cards when you’re chronically ill. Using what little functionality you have to do so means you can’t do other things. Which is the same for everyone of course but when it comes to illness it’s not about losing time it’s about losing functionality to do something really key, like being able to eat dinner. And whereas missing out on basics like eating isn’t the best for healthy folk, it’s much more severely impacting on an already malfunctioning body.

From a healthy person’s perspective, it’s not that they’ve consciously decided not to send us a card any more for Christmas, birthday or whatever the occasion may be. Well, okay, for some people it might be. It’s not an unusual human response to think that they’re not going to send cards to people who don’t send cards to them, but mainly it’s very usual to not understand what it’s like to be chronically ill.

Being absent from friend’s lives makes us fade into the background because they have other friends they see regularly. Whereas for us, well, we don’t generally get to see our friends. Travel is erm, difficult (one heck of an understatement, I know) so we see whoever we actually live with… and medical practitioners. (Sooo many medical practitioners). Oh and walls. And ceilings (those of us with Dysautonomia tend to know some of our ceilings in quite a bit of detail)! We don’t tend to get to see anyone else. So the friends we haven’t seen for years can be just as important to us now as they were back when we were able to see them in 3D. They do not fade into the background because our foreground is mostly illness, they stand out in the bright and colourful areas that we like the most.

Potentially a healthy friend and a chronically ill friend can perhaps feel very differently about each other. And it’s hard to feel ourselves being faded from their main friend space when they are often still our main friends.

We can’t help hoping for indications through the post that maybe they haven’t forgotten us either, that even though we are ever-absent from their lives that they still somehow care meaningfully about us.

There is a paradox when we make that massive effort though… “I’m determined to write cards this year…” knowing full well that we’re going to make ourselves more ill by doing so: the cards that plop onto the doormat are more often a response to the card we sent rather than something that would have been posted otherwise. So then all that effort brings us a bitter-sweet moment. A card that is meaningful to us and yet never would have arrived if we hadn’t managed to send one ourselves. We learn that when we can’t write cards there are very few people who will still remember us regardless, but we push ourselves every year because we want to send people some love. We don’t write cards to receive them, that is most certainly not the point. We try to write them because our friends mean so much to us. It’s human to feel somewhat bereft when it appears that regard between friends has become imbalanced and yes it’s not actually about cards at all, despite how we tie ourselves in knots trying to work out if we can physically afford the impact from writing them. It’s about connecting with friendships at meaningful times. About feeling loved and included. That we’re still of some importance or significance to them. And it’s about feeling a little less alone at a time of year when loneliness can be most difficult.

In the end we have to be kind to ourselves. If it’s going to reduce our functionality to the point of being even more impaired in meeting our most basic needs then we shouldn’t be pushing ourselves to do it. The reality of not receiving any festive cards is an extra sadness in the overall cruddiness that is being really ill all the time, but we really need to manage our health. Fortunately our pals who also happen to be fellow patients totally get it, we support each other and reiterate our friendships online. Thank goodness for the internet! Though we still try, and each year some of us will succeed in writing a few cards and asking someone else to get us stamps and post them for us.

Interestingly, I find that my doormat is more likely to be graced by completely random arrivals that have nothing to do with yearly events. These are perhaps the most beautiful and lifting kind. When someone has thought of you just because they have, not because you’re on a list. The arrivals tend to be from a few astoundingly thoughtful friends who I either rarely see or have never even met in 3D. These are the heartwarmers. The ones who make us smile just by thinking of them. They are most commonly fellow patients who understand in depth what living with chronic illness is like but who send something because of the love in friendship, not because of the illness we might share (even when what they send may in fact be totally related to our illness, and is super thoughtful and aware because of that too). These arrivals are overwhelming because we know how much it has cost them to do this, and they chose to do it anyway. Love is priceless.

Like these metal drinking straws sent to my by ‘The Princess in the Tower’ so that I can still get some enjoyment from a cup of tea when I cannot raise my trying-to-faint head.

The other arrivals are from that rare breed of healthy friend who sees the health stuff, does their best to understand it but still sees us in here as well. We’re not just a walking illness to them, we’re a friend they love. And because they love their friends, seeing us so ill pains them terribly. But seeing us in here too, gives them hope and helps them cope with the illness stuff. They have to keep their distance to cope, but they don’t stop caring. I don’t think they know just how rare they are, many patients can count these friends on less than one hand.

Contact from those who still genuinely know us and who handle the illness that comes with us as best they can (effortlessly, in the case of fellow patients) means more than a token reciprocal card. People are insanely busy at Christmas. We get forgotten because they are buried in Stuff and they don’t actually see us in 3D. But those blanket text messages and occasional private social media messages that we receive instead mean the world to us. After all, we do the same. It’s better for our health to do it that way and we know that our sentiments are no less for having sent them out en masse, so we know that receiving friends’ messages like that are just as genuine. We may not be able to hang them up and look at them from wherever we are stuck dealing with symptoms that day, but they warm our hearts nonetheless and that’s way more important than warming our doormats.

The yearly paradox persists though simply because it’s nice to be able to send cards to the people we care about. To show we are thinking of them and give them something they can put up in their home instead of read once on their phone. We’d like to be able to be a bit more present in their lives that way. And we’d like to experience being on the receiving end of that, too. Let’s try to be kind to ourselves and allow us to send the messages to those we love in lieu of writing symptom-amplifying cards, or sending a selection of carefully chosen emojis or a voice message in the case of those patients who experience enormous impact from using their hands. Says the hypocrite sat here surrounded by cards that I hope to write.

Yep.

Every year. <headdesk>

Happy festivities to you all whichever they may be. Be kind to yourself, there are people out here wishing you well and who are dancing the paradox with you.

xx

Coping with ‘still’ being disowned

Family has to have a broader meaning or I wouldn’t survive. I put on a good front but what silently rips me apart everyday does so even more relentlessly at this time of year. So many of my fellow patients have also been disowned by members of their family, courtesy of neuro’ symptoms and the resulting accumulated misunderstandings. It’s a horrific ‘norm’ but I never thought my family would be that kind of normal. We were so close for so long. Two family members outright believe I’m some kind of opposite of me, one has never said what they think but hasn’t acknowledged any messages or even my basic existence since the others disowned me. One definitely knows I’m still me and I am blessed to have them in my life.

Family is those we care most about and who cares most about us. Some of those I care most about think bizarrely incorrect things of me which is a daily torture I struggle with. But the rest of the people in my life know who I am and their (your) mutually reciprocated love and care is what helps me to keep going. Thank you. For just being you. I love you being you.

Like many other patients I keep thinking that one day this nightmare will end. That those three members of my family will wake up one day and remember that I’m me but after, what is it now? Five or six years? I try really hard not to remember how long it’s been. After this long I have to find a way to let go of the need for that to happen whilst still keeping hope more generally. I have to find a way to stop the ‘why? wtf? how-is-this-even-possible? argh! I-can’t-cope-with-how-wrongly-they’ve-got-me’ going round and roouund my head each day.

I live by distraction. It’s a chronic illness tool for survival which I try to apply to this kind of pain as well. Distraction is the only way I keep going in this regard but at this time of year when Magic Dude is at work and I can’t phone my Mum to wish her a happy Christmas because she’d hang up on me over stuff I don’t even understand, well, it’s a whole new level of hurt and confusion.

There’s aspects we hang on to in the hope that an answer will magically appear. In my case I’ll likely never find out what the confusing conversations were taken to mean. They were during my neuro’ downslide which was reducing my processing so swiftly that none of us stood a chance of finding out about that before it affected communications and interpretations. And why hang onto that? Even with the med’s that I have now I can’t read the explanatory email because my fight or flight still responds by trying to make me pass out. I actually tried to reply to that email in the beginning. We often try to deal with things as we would have pre-illness because we don’t realise at the time how cognitively compromised we can be. I made that mistake. I would read one paragraph then battle not to pass out and then, once I was vaguely upright again, I’d attempt a reply to that one paragraph without realising how severely my processing was being affected. It took me three months to write a reply because it took so many days to recuperate after reading each paragraph. You’d think I’d have cottoned on but I just thought it was the extreme distress causing it. I’d never been disowned before, but I’d never been so cognitively compromised before either.

To this day I have no idea what was in the email I received or the one I sent and as I can’t read either without getting severely symptomatic I have to accept that I am unlikely to ever know. And I think this is the issue for so many in this situation – we never get to resolve it, we never get to correct each other’s misunderstandings. It remains an open case. There’s no real understanding of how this came to be, it just happened one day out of the blue and that’s why we struggle to find a way forward. Because it’s not just the loss, it’s the fact that the loss seems so random and inexplicable. Being unaware of any comprehensible reasons for such an extreme life decision makes it a lot harder to accept and cope with. And that shock never seems to go away. Every day it slaps us in the face again. Having a faulty nervous system sucks.

One thing I do manage though is to hang onto what was. Before the inexplicable. Maybe that makes it harder in some ways but it definitely makes it easier to not implode entirely. I remember when Mum knew who I was. All those years, all that love, all those shared experiences – they are not erased and they’re not changed to fit with my new reality. They are a part of me and of my journey to who I am today. Admittedly who I am today was also massively impacted by being disowned but I do not have to let go of those good memories to deal with the confusing past few years. The good and the bad times are not mutually exclusive, they can co-exist Shroedinger style. Which can also be upsetting as the contrast is so extreme. But it forces me to look at the now. What I want from life in it’s current reality. And prodding me to keep focused on the present is no bad thing at all. That’s where life gets lived after all. I want to fill it with smiles and goodness.

So in each moment – what would help with the smiles thing? If I find I’m a bit stuck… planning housey stuff and sketching ideas (refocuses my mind to positive developing stuff), arty stuff (currently embroidering my first ever home-made curtains, they’re gonna be the prettiest bodge-job ever 😉 ), playing Lord of the Rings Online (it’s currently the Yuletide festival on there!), Facebook (connections with friends), online ‘window’ shopping (pretty stuff!), sometimes I can handle some music (maybe something enthusiastic like Florence and the Machine’s ‘Dog Days are Over’ or perhaps something beautifully chilled like Stevie Ray-Vaughan’s version of ‘Little Wing’ or delightfully nervous-system-calming like Ry Cooder’s ‘Dark is the Night’). What would your go-to list be? And would it be helpful to have that list up somewhere so that you can see it when your nervous system is raging or the thoughts are circling endlessly round and your cognition needs a helping hint?

This post was prompted by the first acknowledgement of my existence in aaaall this time by that one family member: today they removed me from an old message group. So I guess I finally have my answer on whether a) they wanted to have contact but felt caught in the middle, or b) it has been their choice to avoid me all these years. Maybe that’s helpful. I’m not sure yet. Maybe that’s one less question to drill into my soul each and every day.

I wanted to share my experience with my fellow patients so that you know that you are not alone. If you’re struggling with this kind of loss I want you to know that I ‘get it’ and I’m sending love and hugs. I am open about my loss, my distress, my confusion, my ongoing attempts to cope all these years later because this kind of stuff happens and I want you to be able to talk about it if you need to. It’s okay to talk about it. A common misnomer is that loss and grief get ‘better/easier with time’ whereas it’s really that we get better at coping with it. Of course it can be difficult to get better at coping when you’ve got a faulty nervous system that freaks out the moment that big-stuff-subject pops into your head. Hence that handy list of calming in-the-now stuff.

Getting my feelings down in writing also kind of helps. When this stuff begins to devour me I need to get it out somehow. The process naturally makes me re-assess my approach and behaviour which helps me think about what I need to work on next to better cope with the loss and confusion. There’s plenty of research on how writing can be helpful. If you need to talk and there’s no-one around at the time it’s another option to get those endlessly whirling thoughts out of your head. Maybe give it try. Poetry can be pretty cathartic so don’t be afraid of different types of writing. Write like no-one’s ever going to see it because no-one ever has to.

If this post makes you feel any better, any less alone, then hopefully you now know that it’s okay to feel how you feel. This is no easy or quick fix. We are complex beings even without the chronic neuro-illness complications. But it’s okay to feel and it might help to get some of those feelings out, whether that’s onto paper or with a trusted friend. You don’t have to bottle it up.

And if you know someone who is struggling with the impacts of chronic illness on their family attachments (or indeed struggling in any way). I want you to know that just by listening, by acknowledging, just by being you – you make a difference. There’s no need to encourage them to talk endlessly about things, (with conditions like mine that could actually rile up the nervous system even more), just being an ear and then being the much loved distraction that you are helps enormously.

Wishing you smiles and goodness,

Sending love to you all, xx

The Elusive Spoon

This is written for Dysautonomia Awareness month and is spoon related as a result of Christine Miserando’s well known “Spoon Theory“. This is a bit of a day with a CRPS & Dysautonomia patient…

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Oh no, really? Morning already? How did that happen?! I mean it’s not like I got any actual quality sleep or anything! Ugh!

Scrunching her eyes up and contracting her muscles to pull herself back under the covers Elsie tried to come to terms with the time.

Yep. There’s no getting around it. It’s definitely morning and if I don’t get up I’m gonna be pushed for time.

Flopping the covers back she raised herself up slowly then waited for the spots of light to stop dancing in front of her eyes before attempting a full upright position.

Scooping up a pile of cutlery next to the bed, and then returning one to the bedside cabinet, she reached for her mobile phone to check the time. 9.30am.

Oh no, I’ve only got an hour!

A brief look of panic crossed her face before being replaced with one of intense determination.

“Right!”

Pushing herself up to standing she moved stiffly across the bedroom, being very careful to step overly widely around the corner of the bed.

No bruise that time. Hah!

Slowly becoming a little less bent over as she walked to the bathroom, she piled the cutlery on the windowsill as she reached for the toothbrush.

With clean teeth, washed body, brushed hair and an empty bladder she made her way back to the bedroom. A little more alert and minty fresh than before. A small pile of cutlery now also sat on the bathroom windowsill but the remainder was clutched in one hand and got deposited on the bed as she found underwear, tracksuit bottoms, a couple of layers and her handbag. After dressing she placed a couple more pieces of cutlery on the bedside cabinet, before stuffing the rest in her bag with the mobile phone and heading off downstairs.

How am I doing timewise? Checking her phone again. Pretty good. Still time for a proper breakfast. On went the kettle, into the microwave went the porridge, and she started counting out supplements, vitamins and medications into a pretty coloured shot glass. Tea made, porridge mixed with scrummy cinnamon, tablets collected together, hot water bottle made… all went into the living room and she turned the TV on for company before collapsing on the sofa.

Placing the hot water bottle under her legs and pulling a nearby blanket over them she grimaced a little but only for a moment. Then that look of determination returned again. Reaching for her bag she removed some of the cutlery, placing it on the table.

Hmmmm, this bag’s getting light already.

Half an hour later and once again standing upright, Elsie makes a soft drink to put into the bag along with a bag of ginger, half a bag of salted pumpkin seeds kept shut with a metal stationery clip, and her collapsed practice sword.

“Trainers! Can’t be forgetting them now, can I?”

I wonder if my neighbours can hear me talking to myself? Hehe
Coat, bag, keys, flask, mobile, trainers, insoles…. yep I think I’m ready.

Reaching into her bag she removed several items of cutlery and left them on the coffee table before locking up the house and settling into the car for the short journey into the outskirts of town.

As she pulled up into the car park at the industrial estate there was a single piece of cutlery lying on the passenger seat. After finding no parking spaces and all the disabled bays taken she had to use a space outside on the main road to walk from. Before leaving the car she placed her disabled parking badge on the dashboard and a second spoon next to the first and then walked to a business unit where she greeted classmates and teacher and started industriously putting on her trainers and doing some stretches that have a tendency to make other people’s eyes water. But that’s hypermobility for you!

After 15 minutes of calming Chi Gong she felt more separate from any stresses and strains but had to drink some of her lemon squash to try and reduce her body’s urge to faint. Some glugs of fluid later and the class were moving in time to the music for the Yang style 24 form of Tai Chi. It’s the form often seen practiced around the world and it felt good to go through the moves together as a group and to feel the body responding to what was being asked of it. The familiar moves being reined in by Elsie so that she doesn’t topple over as often nearly happens early in a lesson.

Good thing the teacher knows about me or I’d have a list of corrections as long as my arm!

While the others were chatting about the moves they’d just worked through, Elsie quickly ate some ginger to try to reduce the nausea, had another couple of swigs of fluid to try to reduce the faintyness and then she expanded her practice sword to it’s full length to start some individual work. The class numbers were small today and there was a little more space to wave the sword around!

It felt good to work through the sword moves she knew so far, but after some corrections from the teacher the fluidity and meaning of the moves increased and it felt great! No, it felt awesome! How wonderful to be upright and moving with purpose. She knew the moves could look beautiful if she worked at it hard enough, so while the lesson lasted she went over and over and over… just getting the moves more clearly etched into her head and into her ‘muscle memory’ for an even better foundation to work on. Fantastic!

When she returned home she found that getting out of the car was already difficult. Walking as well as she could she went indoors to put the kettle on again. The pain was already rising. She could not stand long enough to make any food for a midday lunch so she grabbed a banana and a protein flapjack. With hot water bottle and a cup of tea she returned to her spot under the blanket and this time she lay down flat to try to help her body recover from the near-fainting that had come on.

Reaching for her bag she removed several pieces of cutlery and looked at what she had left. One piece for everything she did. Starting with a finite number she had to lose a spoon for every move she made. One for getting to the bathroom. One for getting washed. One for getting dressed. They go down in number so fast it makes her days very tricky. Carefully placing her remaining spoons on top of her bag she figured she might have enough to get ready for bed later, but not enough to get any food.

Sighing she lay back and waited for the heat of the hot water bottle to help her muscles relax a little, for the pain levels to reduce a little from the high levels to something a little less screamy.

She knew she’d not be able to move for several hours.

Good thing I forced myself to the bathroom already or I’d be dying for a wee by now!

Resigning herself to the hours of pain ahead she smiled to herself.

An hour ago I was doing sword Tai Chi! What an achievement!

She grinned and adjusted the position of her legs. Then turned on the laptop to see how her fellow patients were doing that day. Her brain was not up to much at all, but at least she could say hi and check everyone was okay.

She settled in for the long haul. Distraction would help pass the recovery time. Then it would be time to physio’ again. That’s when she would decide what to do about not being able to get food. Maybe one of those vitamin powdered drinks, she could possibly mix that with milk before running out of spoons entirely and ending up in a mega-flare.

We’ll see. That’s later. This is now. And right now I’m chuffed that I learnt more in my physio’ class today.

***

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Spoons are more than cutlery to us ‘Spoonies’, they are our metaphorical spoons that help to describe our medically induced limitations to others. We try to make spoons last longer, try to get the most value out of each one that we can. We desperately wish we had more of them to be able to function a little more during each day and often send virtual spoons to each other in solidarity for our daily challenges. Sometimes we ‘borrow’ spoons from the next day, a kind of advance on spoons that we will severely pay for later in health repercussions.

The ‘Ishishara Spoon’ created for one of Jasper Fford’s books

Picture source – no longer available but it was a challenge on Jasper Fford’s Facebook page to use various images. He was intrigued to find out what we might use them for!
You can still see this artwork on his webbie here though. 🙂

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 x

National Poetry Day in the UK

The Now

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I’m having a transition

I don’t feel quite right

It’s not bad

It’s just…

The full extent is not yet in sight

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I’ve tried to put it into words

But they only show the edge

The words are right

The truth is there

But I can’t see past the ledge

So

What I think is happening

Is only half the tale

Or less maybe –

I just don’t know how deep the scale

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I think I’ve passed another milestone

Or I can feel it by the way

I yearn to peek

And see what’s what

But a day still lasts a day

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I cannot rush to find out

I can only live each day

The Now

That’s when I like to be

No peering in the grey

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This trembling within myself

Has not yet reached my brain

The body knows

But I do not

And

I must not entertain

Speculations

That might not help

They are not my realm

The Now is home

The Now is mine

And I am at the Helm

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x

Invisible Illness Week 2014

Invisible Illness Week is 8^th-14^th September and the 30 questions are in circulation again. So here’s my answers for this year, it will be interesting for me to see how different they are from last years answers too..

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30 Things About My Invisible Illness You May Not Know….

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1. The illness I live with is:

Multi-systemic – it affects entire systems in my body with multiple ongoing issues all day every day…

faulty autonomic nervous system,
which affects the central nervous system,
plus unhelpful neurological re-wiring and
a compromised auto-immune system.

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2. I was diagnosed with it in the year:

CRPS in 2005

Dysautonomia 2014 finally in writing, though it was diagnosed verbally back in 2010

Partial Hypermobility 2014, as the mega ‘growing’ pains and clicky joints were dismissed by my childhood GP despite my Mum’s concerns

Degenerative issues in hips 2014

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3. But I had symptoms since:

CRPS since 1999

Dysautonomia since 1999, it kicked in within weeks of the CRPS with IBS, closely followed by a tendency towards low blood sugar and body temperature dysregulation.

Hypermobility always (also affects the autonomic system)

Degeneration in hips over time – a development potentially related to the hypermobility

All of these conditions are inter-related. The issue from birth was the hypermobility… which can affect the autonomic nervous system but I experienced no major issues there originally.

The pre-disposition to autonomic issues and the priming of nervous system default responses during childhood resulted in the development of CRPS (which involves faulty pain signals through the ANS) after a minor injury… which had the knock-on effect of more autonomic issues developing over time (some within weeks, others years later after a trigger event).

Plus the long term hypermobility has also had its own effects on my joints.

So it’s all very over-lapping.

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4. The biggest adjustment I’ve had to make is:

Learning how to still be *me* despite the massive lifestyle changes.

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5. Most people assume:

That I’m not that ill <facepalm>

(because I usually look and sound fine when they see me during my physio’ which is the tiny portion of my day where I’m mostly functional)

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6. The hardest part about mornings are:

Having to wait for hours to actually be able to move about with less extreme pain and/or less extreme near-fainting.

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7. My favorite medical TV show is:

Scrubs 😉

(In the UK medical programs are all soap operas. We also have documentary series which might occasionally cover a health issue).

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8. A gadget I couldn’t live without is:

The kettle!

(because my hot water bottle is a permanent fixture in my daily pain management *and* the kettle also enables cups of tea!)

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9. The hardest part about nights are:

I know I should probably say the pain, or the fact it never ever ever goes away, or the silent tears that might escape every once in a while when it gets so hard to just keep fighting when even sleep won’t grace me with it’s assistance. But you know what really bothers me the most? Trying not to wake Magic Dude up coz the headboard creaks when I shift position when I’m sitting up!

(He says I shouldn’t worry about it but I’d rather he got more sleep)!

That not to say that it’s worse than the other things, just that the other things are permanent and horrific so I tend to focus on the fleeting or non-health aspects of the toughest stuff to help me to deal with it!

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10. Each day I take ? pills & vitamins:

9, plus painkillers when required (with occasional anti-inflammatories though I try to keep away from those if possible owing to detrimental long-term effects)

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11. Regarding alternative treatments:

‘Alternative’ can have many interpretations. If we’re going down the ‘anything that’s not prescribed’ route… even 8 of my 9 pills are supplements crucial to assisting my body cope with this condition. I ‘pace’ my activity to manage my pain (because it retrains my autonomic nervous system to not over-react). I don’t just do functional movements at home I also attend classes to further strengthen my muscles, improve my balance, work on my awareness of surroundings and where parts of my body are during different movements etc. I also attend a tougher class once a week as I find that this enables my nervous system to compare the rest of the week with that hour rather favourably which also helps baseline pain levels! I’ve had acupressure, auriculotherapy (non-invasive acupuncture on the ears) and even carefully applied acupuncture (they didn’t help the respiratory issues because the faulty de-fault had been set in place for too long, but it was worth a try especially as it was available on the NHS which, by my own description of alternative being non-prescribed treatment, renders all that as mainstream medicine now anyway). I use helpful psych tools for dealing with problematic symptoms of my conditions and to work through any negative feelings I may experience about various aspects of my health (these are available through pain management teams on referral but I acquired these skills myself partly through my psych’ studies but mostly through self-searching and trial and error). I learn much about my own conditions so that I can logically work around the health issues and give my body a better chance of coping with all that is wrong within it. I also happily accept reiki healing offered by friends.

My conditions mean that meds are very problematic in various ways, so doing all that I can to try to keep things vaguely functional without adding the negative effects of meds is reeaally helpful.

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12. If I had to choose between an invisible or visible illness I would choose:

I have both depending on whether it’s during a paced active part of my day and how much various symptoms may be playing up in that moment. Both have their pros and cons, but having both gives me the extra insight which I can employ usefully by helping others, sharing insights and so on.

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13. Regarding working and career:

Work is not just paid employment so although the psych career went down the pan for me I have the 24/7 job of keeping my body functioning as best I can which includes trying to keep up with the latest research when I have enough Brain to make sense of strings of words. My hands are full just with that. When possible though I also spend time assisting in a couple of support groups (albeit rarely at the mo’ as I’ve been more symptomatic of late) and the infrequent addition of writing of course. 🙂

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14. People would be surprised to know:

How bloody awful I feel at any given moment!

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15. The hardest thing to accept about my new reality has been:

How much it keeps me from doing really worthwhile things that would help others e.g. starting a charity as a healthy person would not take two or three years just to get to where we are with it now. It will be really helpful when it’s set up, but it’s so frustrating to be kept from doing things when there are good things to be done, it just means that everything is so slow going.

(Or, more personally, the people I’ve lost as a result of the effects of these conditions. But I’m still steering around that a lot of the time, although at least I’m finally coping better with it now it’s four years on, x)

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16. Something I never thought I could do with my illness that I did was:

Start learning martial arts (albeit adaptive, but many able bodied people have injuries to work around so really ‘adaptive’ is a typical approach, or should be anyway).

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17. The commercials about my illness:

That’s a very US thing, as the UKs NHS is now mostly privatised and getting more so I would not be surprised if we started seeing things like that over here eventually as it will lean more towards insurance for health care and all the knock-on effects that entails. There is certainly very little awareness of CRPS and Dysautonomia in the UK, even amongst most medical staff though, and I would be surprised to hear anyone talking about CRPS or Dysautonomia.

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18. Something I really miss doing since I was diagnosed is:

Dancing. Not professionally or anything, just dancing for the enjoyment of it.

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19. It was really hard to have to give up:

The career path I was working towards.

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20. A new hobby I have taken up since my diagnosis is:

Tai Chi

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21. If I could have one day of feeling normal again I would:

Skip! I would skip gleefully and laugh a lot!

Of course there’s so many things I’d want to do and any of them would be awesome, but the first natural thing of the moment would be to laugh with pure elated, unabashed, incredulous glee and skip skippety skip! (There’d probably be a cartwheel pretty soon after that, too)!

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22. My illness has taught me:

That I am stronger than I ever knew and in more ways than I realised.

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23. Want to know a secret? One thing people say that gets under my skin is: 

I don’t expect much from non-CRPS people, not in any objectionable way at aaall, but simply because how could they ever be expected to know about such a complex and little-known condition? I certainly wouldn’t have prior to actually having the condition, and it took several years even after I was diagnosed to find out. But when doctors doubt the fundamentals of the condition(s) I have, or start down the “and what makes you think you have CRPS?” route…gah! It’s okay, I mean I can pull them back down to earth with a thud when I point out that I was diagnosed by one of the countrys top specialists courtesy of my medical history and an MRI scan as the clincher, but it’s the time it takes you know? It’s wearing having to explain basics to doctors all the time, and it’s a waste of valuable time.

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24. But I love it when people: 

Check to see if I’m okay to do something because they know it might cause issues in my body. It gives me a chance to say if I’ll have trouble doing that today and it doesn’t put a damper on things because *that’s* why they asked. Looove those friends  😉

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25. My favorite motto, scripture, quote that gets me through tough times is:

“Be the change you want to see in the world”

I still use “This too shall pass” (a lot!) but I fancied including this other quote as it is a huge motivator for me.

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26. When someone is diagnosed I’d like to tell them:

Anti-oxidants!
Pacing!
Beware of outdated and incorrect info’ online!

Anti-oxidants..
Inc Vit C up to 500mg at a time (because that’s all the body can absorb in one go) 2-3 times a day. This is also a good thing to do before and after any invasive procedure (even dentist appointments) and 2-3 months after the event is common advice.

Many long-term CRPSers take vit C every day.

Antioxidants are so important to the long-term health of our mitochondria. I also take Co-Q10 every day.

Pacing..
the same amount of activity every day no matter what the pain levels. Starting with a few minutes if that’s all that’s viable is fine because it’s keeping it consistent that is important in retraining the autonomic nervous system to not set off the inner alarm bells every time you move. Eventually this will reduce the pain baseline and improve quality of life and it will even out the days instead of having good days and bad days (which we perpetuate by doing more on good days thus causing bad days and which is the worst thing we could do because it reinforces the faulty autonomic over-reaction, and hence the circular hellishness goes on if we do not pace)

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Online info…

The ‘stages’ were discarded in 2004.
The ‘types’ were a carry-over from the old RSD name but it makes no odds which you have – the nerves are damaged in both cases and the treatments are the same

Lots of info’ online is so terribly out of date and therefore incorrect. Research in recent years has shed loads of light on CRPS and most websites do not have this latest info’. Many fellow patients are also not aware of the latest knowledge and (sadly) neither are many doctors.

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27. Something that has surprised me about living with an illness is:

How much you often become one of two extremes depending on people’s view –
I’m either…

a) not that ill really or
b) not really a person, irrelevant to the point of near invisibility

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28. The nicest thing someone did for me when I wasn’t feeling well was:

This past couple of weeks the near-fainting has been so so bad I’ve even been missing my crucial paced physio’ time. On a day where I was spinny on the sofa Magic Dude turned up after work with pizzas.

At the Tai Chi nationals in June I competed even though I felt so awful. I concentrated so hard and sweat was pouring off me by the time I finished my handful of minutes. As soon as I could leave the performance area I collapsed. Magic Dude was on hand with a bag of salted peanuts, a bottle of water and a sweet drink. He is on standby when I get really symptomatic and he generally knows what to get for me depending on which symptoms are being particularly arsey!

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29. I’m involved with Invisible Illness Week because:

The concept of ‘disability’ in the UK is worse than ever since the welfare reforms and the posited concept of the disabled as scroungers. The number of attacks on the disabled has increased shockingly. I have been screamed at for parking legitimately in a disabled parking space and yet I have many a time gone home in tears because the disabled bays were taken by people with no badges and the screaming pain was so bad I had to turn round and drive home again and wait days (weeks in the pre-diagnosis years) for the pain to calm down enough for me to try again.

There is even an organisation pushing for a more active looking disability symbol but still only include a wheelchair user in that symbol. Only 7% of UK disabled use a wheelchair so no wonder concepts of disabled have been so skewed for so long, let alone the worsening effects of contemporary politics. So it is apparent that even some of us disabled folk are conditioned to think that the wheelchair is the most appropriate symbol for a group of people, when 97% don’t wheel about the place and therefore are often targeted for not looking disabled.

To work so hard to change a symbol which does not address the distressing effects experienced by 97% of disabled who are mistreated for not ‘looking’ disabled is hard to get my head around. It’s a nonsense.

We need change.

And we need to make it happen, because we have the informative inside view.

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7% of UK disabled, 93% of disabled look nothing like this picture

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7% of UK disabled may experience improved attitudes, but 93% of disabled look nothing like this picture

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A broader idea of disabled which includes the concept of non-wheelchair users and which could help to broaden understanding of disability and thus result in less aggressive behaviour towards the 93% non-wheelchair disabled when they legitimately use disability utilities, parking bays etc

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30. The fact that you read this list makes me feel:

Relieved that someone out there wants to learn more during Invisible Illness Week.
So many people don’t realise that many disabled and chronically ill don’t necessarily look unwell.

So… thank you xx

^ geddit? X-)

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I’ve just had a look at my post from last year and I’m intrigued, and pleased, to see the positive changes in my answers to 15 & 18. 🙂

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A note on pictures: I have found these wonderful pictures floating about being shared on social media. If one of these is yours I would love to attach an official source so that others can find your work, or if you would prefer your work not to be included please do let me know and I’ll remove it straight away, x

Ankylosing Spondylitis on the McGill Pain Scale

Recently Ankylosing Spondylitis (AS) has been found to involve neuropathic pain. A question from a fellow patient about the McGill Pain Scale score for the condition resulted in me pottering off to see what research had found regarding AS pain scores.

A recent research paper that involved a small AS sample group of 17 participants who completed the McGill Pain Questionnaire (MPQ). The MPQ score for this sample group was 28.

Please note that with such a small sample group this is a ‘ball-park’ figure for reference only.

I’ve added this to my MPQ diagram below, in case this helps any other AS patients out there to explain the pain levels they experience on a day-to-day basis.

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The main objection you are likely to hear when showing this pain scale to others is that pain is subjective and so cannot be scientifically compared, so here’s some info’ about this scale…

There was no scale of the sort for many years because yes, pain is subjective.

The use of the basic 1-10 pain scale is simply to compare our own pain to our own pain – it is only relevant to us as individuals because only we know a) what pain we are experiencing, and b) what the numbers on the scale represent to us pain-wise.

The McGill Pain Scale (named after the university it was developed at) was introduced in the 70’s by Ronald Melzack and Warren Torgerson and was initially doubted by his contemporaries for the same reason. Of course no scale is perfect, but the MPQ has been rigorously scientifically tested over and over since it’s creation and has actually proved to be scientifically very robust indeed. (There is also a short-form of the MPQ available (S-F MPQ) ).

The reason it works is that it involves asking many patients (so it’s not a small sample group) and they are not asked to just name a number in a subjective way…
The MPQ asks various questions involving both numbers and words that are descriptive of pain. The words used to describe pain have been found to indicate different levels of pain when the similar groups of words keep cropping up in the answers. The set-up of the MPQ is complicated in that it cross references all of the answers with each other to assess things like consistency, but it is designed to be easy to use and easy to score. The complexity used has been found to be very robust for a general pain score.

This scale is a good guideline, therefore, for our understanding of condition pain levels in a general sense.

So yes, pain scales as a whole are still as subjective as ever. But the McGill Pain Scale is a reliable way of comparing conditions as a whole.

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References:

Melzack, R. & Torgerson, W.S. (1971) ‘On the language of pain’, Anesthesiology, Vol. 34, pp 50-59

Melzack, R. (1975) ‘The McGill Pain Questionnaire: Major Properties and Scoring Methods’, Pain, Vol. 1, Issue 3, pp 277-299

Melzack, R. (1983) ‘The McGill Pain Questionnaire’, Pain Measurement and Assessment, pp 41-47

Melzack, R. (1987) ‘The Short-Form McGill Pain Questionnaire’, Pain, Issue 30, pp 191-197

Melzack, R. (2005) ‘The McGill Pain Questionnaire: From Description to Development’, Anesthesiology, Issue 103, pp 199-202

Wu, Q., Inman, R.D. & Davis, K.D. (2013) ‘Neuropathic Pain in Ankylosing Spondylitis: a Psychophysics and Brain Imaging Study’ in Arthritis & Rheumatology, Vol. 65, Issue 6, pp 1494-1503

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Three quotes, possibly not the sort you’d expect!

WEGO Health’s challenge for today is to post my three favourite quotes. I don’t think I could pick just three faves though! There are different quotes that I appreciate during different times, emotions and situations. I could get all deep and meaningful with my choice of quotes, in fact I’m going to… just not in the quite the way you might expect!

So that’s set the scene 😉 …. here we go….

Here’s a snippet about Magrat Garlick, who grows and becomes over several books. It turns out that she’s one heck of awesome when the day needs saving!

This is written with humour of course, I’m not suggesting that we shouldn’t be good mannered. But the underlying emphasis is bang on – we have the right to speak up if we are being treated with disrespect. We have the right to live life as ourselves….

You are your own unique self. Be you….

Live your song, x 😀

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And here’s a few wise words from Nanny Ogg about letting go, xx

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Oh all right, so I admit it, Nanny Ogg’s quote is rather a favourite of mine!* 😉

Much love from me, x

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*For anyone around the globe who is not familiar with the english proverb this last daft (and rather adorable) quote is based on..  “It’s all water under the bridge now” means that the topic being discussed is in the past and that any emotions involved with that topic are also in the past. It’s often a way that one person will let another know that all is okay now. Of course Nanny Ogg’s misreference to weeing is most likely done on purpose in a totally innocent way whilst she has a cheeky laugh on the inside! 😉

Healthcare wishes

Today’s WEGO Health Challenge is: ‘Votes are in – you won!
If you got elected [Prime Minister], what are the three changes you would make to healthcare [in the UK]?’ (wording amended to suit the country that I live in. 😉 )

1) In the UK the National Health Service (NHS) has been quietly privatised bit by bit in the background during that last few years. Many NHS sites are run by private companies already and very little is left to do to leave us without the NHS we have known for the past 50+ years. Up until now it’s been a case of private healthcare being available to those who can, and want to, afford it (as is health insurance), but every UK resident has had access to free healthcare since it’s birth in 1948. There are always some medications which aren’t covered by the NHS owing to cost (and they get discussed separately) but most forms of healthcare have been accessible for all. The privatisation of healthcare is going to change that massively over time as a healthcare system which is profit- rather than ethics-driven is a whole different animal. As Prime Minister I would want to ensure that free healthcare continued to be available to all and retain the ethics upon which the NHS was built for a healthier population.

2) I would ensure that doctors have to periodically be brought up to date in different areas of health. Research and knowledge moves forward over time and understandings of health conditions change, it is not acceptable to have doctors working on outdated premises as it can result in incorrect and mis-diagnoses. I do not expect general practitioners to have specialist knowledge of course, but to have a good general understanding of health conditions as they are currently viewed.

3) I would ensure that medical training includes a ‘zebra’ section about the conditions that appear paradoxical in their presentation and how they can be easily misdiagnosed as a common disorder, resulting in either no treatment or incorrect treatment. For example, basic information such as anxiety symptoms can be caused by anxiety, or sometimes by a disruption to the underlying mechanisms – never assume. (Oh and P.S. doctors are not qualified to diagnose psychological conditions such as depression so patients should be referred to a qualified clinical psychologist for appropriate assessment before writing something in their medical notes which is, effectively, merely a non-specialist opinion and may not actually be correct).

An illegal #4) (Ooh, I’m such a rebel! Mwoohaahaaa!) I would also ensure that the list of health conditions referred to by various organisations (such as disability benefits assessments, for example) are routinely updated so that descriptions of conditions are kept up to date and moved to more appropriate umbrella headings as required. (My experience of the benefits assessment recently is that ‘RSD’ is on their list of conditions, but the new name ‘CRPS’ is not – how can it not have been updated since the name change in 1994? Back then it was thought to be a common-or-garden ‘pain condition’ so when I spoke about it affecting the autonomic and central nervous systems they had no info’ on that, or on the auto-immune aspects, or on the neurological re-wiring effects including neuro-psych’ deficits. It is rated on the Department for Welfare and Pensions’ (DWP’s) list as such a simple condition that I was told that there was no need even for me to be assessed by a non-specialist general doctor with no knowledge of the condition, that a non-specialist nurse with no relevant specialist knowledge was sufficient. Only when I mentioned ‘dystonia’ did they realise that I needed to be assessed by a neurology based doctor (I ended up being assessed by a surgeon). And that was pure fluke that dystonia happened to be on their alert list rather than any of the other CNS and neuro’ issues that I have). This has to change. Working from a description of conditions where some have no bearing on the current medical understandings is completely ridiculous.

I am not the Prime Minister, however, and I don’t envisage that job being part of my future! But I still have hope for change, not because I think that the PM is going to suddenly wake up at 2am one day and have these things occur to him, but because people like you and I can help to highlight issues that need addressing. The NHS is so far gone I don’t know if we’re going to get to revert it back to what it once was anytime soon (although that doesn’t mean we shouldn’t try of course). But by raising awareness of our complex conditions we can make a big difference. The key is in using the skills we have rather than trying to do something which is tough for us on top of living with our wonky health day-to-day.

My skills are founded in psychology and research, plus I love helping others and sharing information so that naturally translates for me into research papers and advocacy work. But I am not able to work so I do what I can when I am able to do so.

For many other patients life is filled with things like working and being a parent so in those instances it is easier to look at things like sharing information, taking some papers to the doctor for them to update their knowledge, signing a petition to highlight a particular issue and so on. We each do what we can, and hope is in us, it’s in our hearts.

Today’s photo challenge: “a picture of an item that gives you hope”!

My own personal hope is founded in my brain, though (whenever it actually works and for as long as it will do so!) because I spend time reading research papers and collating information that helps me to work with my doctor and local pharmacist to figure out what’s the best path forward for my particular array of health issues. My heart and my determination will undoubtedly continue, it’s ‘just’ the brain fog I need to work around, the brain is my hope! ;-P

x

Thoughts on the international disability access symbol

There has been some talk of late about the international symbol of disability access…

We all recognise this, right?

It’s a symbol that everyone can understand without the need for language. We all know that this wheelchair symbol does not mean ‘us’ unless we are disabled. So these symbols get used in many countries to point out disabled-specific facilities such as parking spaces, wheelchair accessible toilets, alternative doorways for the disabled, safety ‘shelter’ areas in multi-storey carparks for those who cannot take the stairs in an emergency, and so on. We all know what this symbol means – there is no confusion over where the disabled facilities are.

Nothing is ever that simple, however.

The universality of this symbol (metaphorically speaking, although aliens may well need disabled access too 😉 ) means that over time the association has been less about the facilities it was intended to represent and more about the ‘disabled’ it is now generally (mis)understood to represent. The repeated associations every time we see it mean that the symbol itself has affected our concept of ‘disability’ – Disability means being in a wheelchair. Being in a wheelchair means that you are disabled.

But the reality is that only 8% of disabled in the UK use a wheelchair.

Yes. You read that correctly…. 8%

So, yes, that means that 92% of disabled people in the UK are not in wheelchairs, and yet the symbol is now so entrenched within our cultural understanding as representing ‘the disabled’ that it’s hard, for those not already in the know, to figure out what on earth those ‘disabilities’ might be.

Assuming that a symbol for a whole population such as ‘the disabled’ is acceptable when it only represents 8% of that population, then other 8% alternatives should also seem completely acceptable to us, right??

Let’s see now…. well…. Age UK’s 2013 report of the UK 65+ age group shows that…

8% are black and minority ethnics

8% have no religion

8% have definite major depression

8% have gone without food to buy christmas presents

an estimated 7% have faecal incontinence

So, by the current disability symbol way of working we could safely represent all older people living in the UK as black and ethic minority atheists with mental health issues, a mysteriously pooey scent and a penchant for gift-giving.

Right??

Um.

No.

Because the disability symbol was never about representing “disability”, it was about letting people know where the disabled facilities are.

So what does this mean for the other 92%? And what about the part of the 8% of wheelchair users who can stand for a time? Indeed keeping muscles from wasting (atrophying) is oh-so important for those of us lucky enough to be able to do so. What are the responses from the general public when a wheelchair user walks to the back of their car to get their wheelchair out? Or when someone on crutches parks in a disabled spot? Or when someone who ‘looks’ healthy parks in a disabled spot and walks to the shops? What indeed? How is the wider population able to interpret this as within the scope of disability when they have the concept of the 8% in wheelchairs as representing us all?

How indeed.

The UK description of disability, as per the Equality Act 2010, is that you are disabled “if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.”

It is quite clear from this that if you can walk but your lack of arms stop you reaching your cereal in the morning – you are still disabled, if you can walk but you have a tendency to pass out at any point – you are disabled, if you can walk but the type of brain injury you have that means you can’t process information for long without becoming incapacitated…and so on. This description is what can’t easily be put into a symbol, even though it needs to be to redress the erroneous cultural belief that has resulted from the current symbol.

Ask anyone in the 92%, or in the part of the 8% who try to walk when they can. Ohhhhh we’ve got stories we could tell you! About people shouting at us, and banging on our windscreens angrily, and kicking our outstretched painful legs as they walk past. Oh yes, we could tell you so much about what it’s like to not live like the symbol and still be disabled. It’s not pretty.

Concepts got muddled about with the 2012 Paralympics. The disabled in the UK are now fairly neatly defined as either heroes or scroungers. The heroes put on fake legs and win medals, or wheel to victory, or do some kickass volleyball moves whilst sitting on the floor. They officially rock! So the public ‘know’ that ‘disabled people’ can do things, too. The ones that claim benefits are therefore seen as shirking and not trying hard enough. The concept of being disabled as a result of being chronically ill was left out of the politicians’ welfare re-jig and the resulting media onslaught, and only seems to turn up in single case stories in the media once in a while. As is how limited Paralympians can still be in their day-to-day lives. But this conversation can lead many off track. The welfare issue is indeed an issue. A massive one. And it needs to be addressed. But this post is about the symbol that has mistakenly come to represent disability itself rather than disabled facilities. There is talk of changing it to something more positive, but the core issues never get raised. Talk tends to be within the same confines. A mere variation on a familiar theme.

In New York they came up with this…

 ..and yes – look at that wheelie go! They are a person, they are living their life, they simply happen to have wheels instead of legs, right?

Uh-huh, you’ve got it! This is all well and good, but it doesn’t address the fundamental perception that disabled people use wheelchairs when, unknown to most people, a massive 92% of disabled people are not the wheelies they are assumed to be. And seeing as 1 in 5 people in the UK are disabled in some way (and that the population mid-2012 was 63.7 million)… that means that 12.74 million people in the UK are disabled, of which 11.72 million do not use wheelchairs.

If you want to redesign a disabled symbol you can ask people what they think, but most people think a wheelchair is representative of the majority. You can ask disabled people but, you know what, we’ve got used to the disability symbol, too and though we want to not be shouted at in public when we are in pain / about to pass out / trying to cope with multiple symptoms at the time etc it is hard to think outside the box when we are in pain / about to pass out / trying to cope with multiple symptoms at the time etc!

How many of us knew how many disabled people actually use wheelchairs? I didn’t. Until I read the Papworth Trust’s 2012 meta-analysis report.

So…. to create a new symbol – look at the facts, look at the figures – who are you trying to represent in the symbol? And by ‘who’ I do not mean a generic stereotypical ‘who’, I mean what types of disability need to be included to make public perception more accurate? Because we have to bear in mind that the symbol also affects the way people perceive disability itself. Personally I’d like to see something like this become the norm…

It clearly shows that disabilities vary and, crucially, that they are not always visible. It could mean less distress for those of us who do not fit the minority stereotype, and it could improve many many lives by doing so.

One concern might be that ‘anybody’ could then park in a disabled bay, but we still cannot park in a disability space unless we have passed the criteria to be awarded an official parking badge, and the alternate symbol may reduce the amount of hostility and flak the walking disabled have to deal with. Similarly, disabled bathrooms are blatantly designed for wheelchair access, but also very useful for head injured people who need less processing to deal with or blind people who just don’t feel like sussing out a new public bathroom layout and would find it easier to have everything close to hand for example. ‘Disabled’ covers different things which the current minority stereotype doesn’t, and a new multi-symbol could help adjust perceptions to something closer to reality.

What do you think?

x

Cluster migraine, a moment of painy poetry!

Guilty as charged!
But as a cluster migraine goes oooon and oooon for days (and sometimes weeks) and being online for a while is actually a helpful distraction during the lesser-uber-pain periods.

In fact I spent some of my lesser-migraine time writing this….!….

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Cluster migraines are not my friend,

I’d like this one to reach an end.

Swollen neck and throbbing brain,

Battling over and over again.

Hot wheat thingy round my neck,

Will ease it off for just a sec’.

Painkillers don’t help enough,

Anti-inflammatories, combi’ stuff.

Next will be the cooling patch,

Stuck to my head, (I’m such a catch!)

When I can’t stand sound,

It’s getting worse,

When I can’t stand light,

I inwardly curse!

Off to bed to lie in the darkness,

Another attempt to boot this daftness.

Stoopid head giving me hassle,

I want to be up, all tappity dazzle.

Nope, cluster migraine, doing its worst,

Dastardly bugger, but not my first,

I’ve had these for years now, on and off,

If it’d just go away I would happily scoff,

At its absence and at my winning through,

But it’s not gone yet, sooo totally poo!

Rhyming through the pain,

Total weirdo.

I should be in bed,

But I’m still here though!

Maaaaan, I’m tired of migraine days,

Too many in a row,

I’d like to kick it into touch,

The blasted so-and-so.

Ah well, kettle on and make some tea,

Gotta move, it’s physio time for me….!

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That’s science, that is!

x

Pictures sourced here.