My phenylalanine experiment

Feeling hopeless and unmotivated…what the…? I always had the motivation to do my daily paced physio’. For yeeeaaars. It’s towards my quality of life through pain management so why wouldn’t I?

Brain chemistry may be part of the problem, though….

Brain power

When we’re chronically ill we tend to get through a lot more neuro-chemicals than we used to. There are constant symptoms and sussing how to manage them as we go along – should I attempt this now or later? If I do it now then this, but if I do it later then this. If I take that med/supplement or eat some food or do that physio first then it will impact it like this or with those variables maybe like this. So I’m thinking maybe I should do this but with these provisos and that back-up and constantly monitor symptoms and be ready to adapt at any given moment as things pan out…. etc etc. There is a huuuuge amount of chemicals getting used up just trying to do the most basic of things. Then if we try to do anything other than the usual getting through the day stuff we decline faster and take longer to recover.

Back when I was studying I found that I will consistently lose my brain if I use it. Not the adage we more often hear of ‘use it or lose it’ eh? The more I use it (more time, more intensity, more challenge – any of those will do it) the quicker I’ll lose it and the longer it will be down for. My fellow CRPSer and blogger, Isy Aweigh, employed her nurse skills and suggested I need more dopamine to help my brain replace the neurochemicals I was using up. To create more dopamine, I need a source of phenylalanine. Us humans can’t make it internally, so we need it from food sources. I’m a veggie so meats are out, but aged cheeses are another source. And they helped. Significantly!

Dopamine.JPG

Created for this post by the Hypermobile Hobbit

It’s several years later though and my neuro’ dysfunction has been telling my immune system to react to all sorts of things, one of which is cheese so that’s that one out of the window!

I was chatting with the same pal the other day about my uncharacteristic lack of motivation and overwhelming sense of hopelessness about how I simply can no longer Brain long enough to do the research work required to gain any useful health support from medical practitioners. Guess what I might need? Yup, dopamine! Seeing as I’m still a veggie (that’s not gonna change) and that I can no longer eat any solid cheeses I’m quite possibly deficient in the phenylalanine that I need to manufacture the required dopamine. It turns out there’s a supplement for it, who knew?!

Phenylalanine.JPG

Created for this post by the Hypermobile Hobbit

After doing a quick bit of research (very quick, my brain falls over soooo fast these days) I found that the natural source found in foods is L-Phenylalanine. It’s not only used to make dopamine though, it’s also used to make other neurochemicals: adrenaline (epinephrine) and noradrenalin (norepinephrine) but it would be weird if balancing neurochemistry was easy, right?! We always need to consider all potential impacts and contra-indications (negative effects on med’s we already take) of any new med or supplement before we start taking it. In my case my ANS-balancer is an SNRI which inhibits the re-uptake of norepinephrine to reduce my flavour of dysautonomia. I was doing well on it until this potential phenylalanine shortage so rather than mucking up any previous balances, the supplement should (if it’s needed) return my neurochemicals to their happier levels.

There is also the artificially manufactured D-Phenylalanine which may well help with the production of dopamine as well, but it looks like the science isn’t completely in yet. It may help with pain however, and the side effects do not outbalance the potential for me personally so the standard mixed DL- supplement looks like it’s a Go.

Symptoms of a deficiency in phenylalanine pretty much describe my current state. Confusion – ohhhh yeah. Lack of energy – in the extreeeme. Decreased memory – significant, noticeable and upsettingly so. Diminished appetite – er, kinda, less appetite and depressed so I’ve been eating sugary stuff on hand and am now unable to fit into my shorts this summer. Possibly any summer. My first significant over-waistband roll. Oops.

I also found out that more than 5,000mg of DL-phenylalanine per day can cause nerve damage. Soooo I’ll be taking less than that then!

I ordered some DL Phenylalanine (a combination of the natural L- type and the manufactured mirror imaged D- type) from my usual reliable supplier of quality supplements and I’m gonna see if it helps me at all. Recommended is 1 x 500mg tablet per day. Not sure if that amount is gonna give me much Brain Time but it’s a place to start. I consulted one of my science whizz friends (fellow blogger the Hypermobile Hobbit) and she has raised a very important question – what’s the ratio of D- to L- in the supplement I have? Good point. L- would be more readily used by the body, so I’ve asked the supplier and am waiting to hear.

First, I figured I should list my current issues so that I can look at a before and after picture. Here we go, this is where I’m at:

Before, circuits

  • Utter fatigue, all the time
  • No brain. Like, really no brain. I struggled to order two photo prints from the usual website we use. I managed two and then couldn’t understand the website anymore. Had to ask Magic Dude to take over.
  • When I’ve got no brain it kinda hurts. Sort of like a headache but different.
  • No idea what the heck is going on a lot of the time, can’t understand concepts, sentences, sometimes takes me awhile even to figure out the meaning of individual words.
  • Memory shot to pieces. Have got used to not remembering anything now. Whole events/days go missing. Previously I would randomly forget ever seeing entire films but it’s so much worse than that now. I even think of something like ‘I must tell Magic Dude this’ and instantly it goes – I have lost the thought less than a second after I had it and he’s sitting right theeeere, it’s not like I had to remember it for any longer than it takes to say it. Really distressing.
  • No motivation whatsoever. Just an overwhelming ‘it’s too hard to sustain’ and ‘what’s the frickin’ point, anyway?’
  • Endless migraine. Relentless. Can’t do anything that doesn’t send it soaring except for prop myself up on the sofa in front of the laptop raised on its over-my-legs stand and there’s very little I can do in that position because I mostly have no brain.
  • Want to bury myself in something creative but not enough brain to finish any of multiple blog posts I’ve started over time. Tried sewing and it’s great but it sends the migraine soaring so can only do that for a short while once a week or so if I’m lucky.
  • Lots and lots of physical health symptoms that are hard to grapple with but I’m not listing them here as that’s not the focus so much as how I’m dealing with them (or not). I’m down in the dumps about coccyx pain being permanent, about near-fainting all the ruddy time, about not being able to choose to do anything useful or anything nice/fun, about not being able to go to Tai Chi classes or even manage any at home since my fall injury a year and a half ago. Yeah, really really down for a long time now. Not like me at all but I’ve been avoiding everyone online because communication has become so hard. I’m on a veeeery long waiting list to see a neuro’ and trying to cope in the meantime. Coping isn’t viable so I’m aiming for ‘exisiting’. That’d be a win, right?
  • Being near fainty all the time means I’m not safe to drive. I can’t get out of the house at all. I am completely independence-free. I managed to drive round the corner to collect prescriptions a couple of times in the past year or so but it took all day to try to get my body functional enough for those few minutes of driving and then there’s the lengthy negative health impact of that to work through afterwards.
  • Coming up for 19 years with this neuro’ condition and this will be the first time I’ve *ever* been referred to see a neuro’ – see why us CRPSers feel so flipping hopeless at times? It’s hard bloody work trying to get basic care because wiring issues are barely even touched on in medical school. Plus – most neuro’s are brain neuro’s and don’t deal with wiring anyway so this eventual appointment will either be really helpful or an utter waste of time and end of the road on any medical help for me. I could cry. But I’m too numb or dead inside or something.
  • Footnote: Magic Dude is a, er, magic dude! He’s been getting me out of the house whenever he can in any ways he can think of. I have noise reduction ear-plugs which reduce volume and help my processing and migraine management. So he’s taken me to the cinema, a concert, the Outdoors. We’re sick of sitting in coffee shops but that’s all I can do most of the time. But coffee shops exist within garden centres so that adds some extra interest (and buying plants is a temporary retail high). I’ve posted pics for my friends of anything I’ve seen outside the house to share that moment of joy but realise that doing so hides what’s really going on. But there’s nothing they can do anyway, and I’m struggling to read and understand stuff as well as piecing words together to form a reply, so messages can actually be quite stressful if they require a reply.

 

Oh. I’ve just re-read that list and realised that it’s basically what was happening when my Mum was trying to suss stuff out, got totally wrong concepts about me and disowned me despite my repeatedly saying that I didn’t understand what was going on. Okay. Arse! I’m back there then, eh? Big neuro downslide. Right. I came back a fair amount from that one, let’s see if I can pull the rabbit out of the proverbial hat this time as well with more help than just flukey luck back then when I found I improved a tiny bit from (unknowingly phenylalanine-ish) cheese sandwiches!

rabbit out of hat

 

Depression is kinda like drowning – it doesn’t look like what you think it looks like. It’s smiling whenever I can, making lots of jokes, going full-on distraction when I’m alone (Lord of the Rings Online), pretending I’m okay just to try and get through until the appointment that’s many months away, yet to be scheduled and which might utterly let me down.

But it might not. ‘Just keep swimming’, right? Ugh!

depression doesn't look like what you think it looks like

Next morning: I just re-read this to make sure it made sense then opened something else up on my computer. I felt like had been doing something else but couldn’t remember what and it was really bugging me. I had been re-reading this. Like, a second before and couldn’t remember doing it. And yet after writing this post yesterday my brain accessed the disowning distress from years ago, pulled Bjork’s ‘State of Emergency’ out of it’s vaults and sang it to my dysfunctional fight or flight self til 3am. Gawd this supplement had better help!

.

Okay, the DL phenylalanine arrived yesterday: 25th  May 2018.
Let the experiment begin.
I’ll come back and add how this list looks in a couple of weeks….

 

After, circuits

Day 1: Shortly after taking the supplement I found myself skim reading two articles in the Psychologist mag, whuuut? Then my brain keeled over, back to ‘normal’.

Day 2: Already using my brain trying to post this when I took the tablet. That weird head tensiony not-headache going on. Not sure I’ll get much impact this morning.

…..

20th June 2018

Okay. Phase 2 started about 5 days ago. Here’s where I’m at:

No major changes on just one tablet per day so phase 2 is an increase to two (one after breakfast and one after lunch, though with health varying these meals vary pretty wildy timewise).

However, I didn’t mention something in my list of symptoms above because if I listed all my symptoms you’d fall asleep trying to read them! Yet it seems to have improved a bit since taking the phenylalanine. No idea yet whether this is causal or coincidental, time will tell.

The unmentioned issue is that since my fall injury I’ve been reacting badly to certain things. I experience near-syncope, nausea, facial drooping, limbs powering down, slurring, eyes flickering independently of each other, dystonia in my legs. The triggers all seem to be when there’s too much for me to process i.e.:

  • motion (in a car, worse on narrow and/or windy roads, first person gaming)
  • flickering lights (florescent, daylight through trees when I’m travelling)
  • audio input at the same time as motion impacts harder and quicker (e.g. music, radio, audio book)

I’m hoping the supplement is related to the improvement in how well I cope with motion. All I can do is keep working through phase 2 and see what happens.

 

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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.

Handmade card from Glenys

Enter a caption

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.

metal straws

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

Trauma in a faulty nervous system

Trauma impacts on us at the time (by initiating our fight or flight survival responses) and over time (impacting on how that system responds to certain stimuli). When in a state of fight or flight one part of the nervous system goes into overdrive to do practical things like getting muscles oxygenated for running and dodging. It doesn’t need our body to worry about mundane things like digestion at the time, so the other part of the nervous system which calms things down doesn’t get stimulated in fight or flight scenarios.

bertram

That calming part of the nervous system is strongly associated with the vagus nerve. Patients with dysautonomia have faulty nervous systems and so they often have a variety of misbehaving automatic body processes that all stem from the faulty messages the system sends to our brain. Our brain responds appropriately, but, as the messages were wrong in the first place, the brain’s resulting instructions are inappropriate and often make matters worse. This is an ongoing, circular issue.

One aspect of having a faulty nervous system is that the fight or flight tends to not work properly. The tendency is for sympathetic (activating) nervous responses to be overdone and parasympathetic (calming) responses to be underdone. As a result, fight or flight is a pretty common experience for many dysautonomiacs.

A fellow blogger over at ‘Healing from the freeze’ wrote a post back in 2011 which I’ve belatedly come across. Tracy Andrews is an acupuncturist and was looking at the involvement of the vagus nerve in trauma, namely that it kicks in to help us cope by kinda distancing us from the pain, and that mindfulness is therefore very difficult in trauma patients. She also points out that this is important on a physical plane, not just an emotional one, as the experience of trauma affecting the vagus nerve means that we feel a visceral response (a ‘gut reaction’) to trauma. That physical pain and discomfort is now recognised as part of the trauma experience. If this sounds weird just think of how normal it seems to us when we see a TV character’s response to something horrific is often to feel sick or even to vomit. It’s our innards functionality getting disrupted by the nervous system that causes this kind of physical response.

My reason for this post is to inform both mainstream and ‘alternative’ practitioners of the Dysautonomiacs’ experience to trauma as being very different from that understood as the norm. We need professionals to work from a base of understanding that our trauma response is very different from what’s expected, and that any trauma treatments aimed at reducing vagus response and removing the traditional blanket of numbness is actually the exact opposite of what is needed in our case.

Our vagus nerve doesn’t work properly! We regularly get fight or flight responses over the most stupidly small things, but the impact of that is not fleeting or brought under control with ease or automaticity (coz we don’t really ‘do’ automatic processes, or at least we tend to have a diverse array of faulty autonomic responses).

When we experience trauma, we feel all the same gut wrenching pain and anguish that anyone else does, but we don’t get that numbing sensation that often initially shows up after a shocking event. We simply continue in the same high level of distress and cannot find a way to bring that level down.

I wasn’t always a dyautonomiac. I have experienced the vagus calming impact. I know my nervous system is a sandwich or two short of a picnic these days, but I’d never consciously applied that knowledge fully to my two year long stint of living in permanent gut-twisting distress. I even described it as like being ripped apart from the inside out and as being physically painful and yet never fully made the link until reading Tracy’s post. It was non-stop 24-7 and I struggled to function and to make sense of things around me. I have always looked at those years as being ‘nervous system stoopid’ and though I acknowledged that it was a physically painful experience and that science backs up that trauma causes physical pain, I had not consciously tied the latter in with the vagus nerve specifically. Not surprising really as when in fight or flight, higher brain functions don’t get supported any more. Brain-computer says “no”! And as I experience a lot of fight or flight effects (it’s a continuous management issue) I don’t get much Brain Time these days.

making-tea-with-near-fainting

A specialist confirmed that my fight or flight switch was stuck in the ‘on’ position and had been for a long time. Let’s just drift over the fact that scientists reckon that the fight or flight response is, yes, useful, but damaging if ‘on’ for more than two minutes straight. My several months of whackadoodle respiratory processes seemed like nothing after the two years of not knowing what was going on when my Mum disowned me. Those two years are what are foremost in my mind as I write here about the physical pain of trauma. No trauma I’ve ever experienced was like that and I was in a perpetual state of fight or flight that made it very hard to get through from one second to the next. Many months of being ‘on’, followed by years of being ‘on’, permanently having to monitor and manage my symptoms because my default is now for my fight or flight to be, yes, switched on. You see how far removed we dysautonomiacs are from the trauma ‘norm’?

Interestingly, the one thing I found that didn’t help exactly but kinda almost got me through each second at a time, was what I now realise was my own attempt at the numbing/blanket effect that my nervous system wasn’t giving me. I’ve written about this tool before but not from a visceral perspective. It didn’t come anywhere near being numbing in any shape or form but it helped me to survive through each moment. That thing was to play an immersive console game, when I’d never been a gamer before. I mean I’d played Sims occasionally, but not what I thought of as ‘proper’ gaming, heh. It was a couple of Bethesda open world games (Oblivion and Fallout 3 as it happens) that were non-restrictive – you can go anywhere, do anything. There is a central storyline, but you do it whenever you feel like it, leaving you to act on whatever is most effectively stuffing your brain with ‘other’ at the time.

Understandably my system is mega-faulty after that incredibly prolonged period of flooding my brain with chemicals shouting ‘Alert! Distress! Danger!’. It was going downhill at the time; hence the misunderstandings and miscommunications, but that one event pushed everything skyhigh. I now have to take neuro’ meds to help stabilise my autonomic nervous system. They don’t magic the malfunctions away, but they do help to reduce the extent of their impact significantly. I still have to be very careful about how I manage my brain and body when I feel the responses going doolally (which can be multiple times a day).

The key for practitioners (and self-advocating patients) out there is to understand that this difference in neural response post trauma is significant and treatment needs to be appropriate to each patient’s wiring. The wiring in dysautonomiacs is wonky so the treatment has to be on a proportional incline!

hoofbeats2

This is why rare disease (and rarely known disease) patients use the zebra pattern when awareness raising

 

If you’re a fellow patient experiencing fight or flight issues then definitely talk with your doctor about it. If they don’t realise that the nervous system is affected as part of your condition then have a look through my FAQ of links and research in case there’s something there you can print off to help them understand. Please note: doctors are trained to learn from science so general media articles won’t be of use to them, so go for the research papers when you can, medical practitioners are totally used to working with those.

My fellow blogger, Isy Aweigh (over at ‘Living anyway: Life, CRPS and Everything‘), kindly checked this post for me before publication coz, as it turns out, writing about the fight or flight response, yes, you’ve guessed it… sets off my fight or flight response. My thanks to Isy for making sure this post made sense (and for adding a truckload of commas to slow me dowwwwwn)!

Showing the post to a fellow patient before publication meant that we found we both have similar experiences with trying to calm our nervous system down. We both find the type of mindfulness that focuses on the ‘physical within’ pretty useless. Our innards don’t play well with others and it seems that includes our conscious attempts to calm them so we have to take a more indirect approach. Our approaches are specific to us as individuals but there is a lot of overlap because we utilise what happens to calm us, rather than focusing on calming. For me I pretty much go through them in this order:

  • I can use breathing techniques but it has to be with a QiGong (Chi Gong) focus for me. I can’t focus on the breathing itself, it has to be on pushing my stomach out to draw my diaphragm down. I imagine I’m drawing energy in with the breath and down to my stomach, it gets drawn down through my body to the front of my stomach then down and round to come back up towards the back of my body and leave through my mouth again. Keeping whatever energy my body needs and giving the rest back to the universe. Pretty calming no? Well, it helps me a darn sight more than focusing on my breathing does because I need to be calmed by what I’m doing, not to try and focus on calming what doesn’t like to be calmed. Focusing on what’s wrong and trying to correct it doesn’t work for me, I have to come at it sideways.
  • I think of Magic Dude which both lifts and calms me with love. I realise that I’m currently pretty lucky to have someone like him in my life, but if he wasn’t I would do the same thing with my most precious of besties.
  • I think of my eventual art area, in our currently partly renovated home, and it makes me smile. It is going to enable a return to a great joy of mine.
  • Doing some Tai Chi would be my best option for sure. It wins by faaaaaar! When Tai Chi-ing my mind is occupied with that alone. It is a moving meditation and supremely calming for me. My pain condition means that for most of each day that simply isn’t an option for me, so…
  • I run through Tai Chi moves in my head. Research has shown that clearly imagining movements in our heads actually strengthens the neuronal pathways that we would use if we were actually doing the moves physically. So it’s not surprising that thinking through the moves is almost as calming as performing the moves with our entire body.

The reason they’re in this unexpected order is because fight or flight wobblers can occur anywhere. We need simple on-the-spot options that we can do without drawing attention to ourselves. It’s not helpful having to prioritise answering questions over health management, so subtle is handy but also much needed when activity is restricted. So Jedi mind tricks are key! 😉 But yes, I will break into Tai Chi anywhere if I need to or if I simply feel like practising! I’ve been known to Tai Chi in supermarkets, D.I.Y. stores, car-parks, you name it! And people tend to not interrupt when you’re being that weird! Hehe

But that’s just my own array of tools. I wonder how much we all overlap with the approaches we’ve developed which work for each of us?

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.

Pain of confusing loss, broken heart

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

Managing in a new home

Well, what a palaver moving home is when you are chronically ill eh?

It all started so many months ago with packing well in advance so that I could do a little bit each day during my paced daily activity. The pacing is such a crucial part of my pain management so I can’t go overdoing it as then I risk sending my nervous system back into it’s old amplifying ways. But then there’s all the viewings of potential houses, sometimes Magic Dude was at work and I had to drive myself to viewings and take pictures to show him. It all adds up and takes its toll. And it takes its toll for a long time afterwards. Trouble is it doesn’t stop there of course.

We tried to buy a place and had to pull out when we found out there were potential structural problems so we found ourselves back at square one again. Our buyer hung on (and on) (for months) and we eventually found another place, won the bid and then it took ages to actually get through all the paperwork and reach the incredibly stressful moving day. It was all so well organised by us to best manage my health issues but the handing over of the keys was out of our control. Our lovely removal guys were sat outside the new place for hoouurs waiting for us to call them and let them know that we’d finally been given the keys and were on our way. In the end it was so late in the day that they called in a couple of extra guys at no extra cost just to get unloaded in time. They were awesome. But yikes, what a day!

As I now have immune responses to loads of different things Magic Dude and I cracked on with my second paced activity of the day removing the bedroom carpet, under which was a layer of lino and under that was a layer of disintegrating black spongy stuff. It was a messy job so we wore facemasks and got on with filling up rubbish bags and cleaning the uncovered floorboards. Windows open to air it out. Mattress made up on the floor. Eeeeeevrything else shoved into the extension because we foolishly thought we’d be decorating everywhere pretty soon, haha. Silly us!

We have got loads done, though.

First things first… the health stuff:

New boiler because I need to be warm to help manage my pain levels.
– we were lucky to get a government grant via a local environmental charity and after taking some info'(including Magic Dude’s income) we were awarded an additional grant from one of the charity’s other schemes as well. The government ‘Green Deal’ has finished now but it’s always worth checking with any local teams or charities to see what’s available as they receive grants from elsewhere too. Your local council should know who in the area you could contact to ask about this stuff.

Boiler

Loft and wall cavity insulation for the same reason. If I’m not warm I’m in more pain. Simple as.
– we had the work done by energy company EDF as per advice from our local environment team. Many energy companies in the UK offer schemes like this but EDF are unusual in that they are the only one currently offering this service to disabled people who used to work. If you receive contribution-based disability benefits you are not included in many schemes available. Purportedly this is because contributions based disability ESA (for those of us who happened to have been able to work at some point in the past) is more than the income based version but for me personally the addition of about £3 doesn’t make enough of a difference for this to make sense. Yes, I know, whether we used to be more ‘able’ makes no difference to our current state of disability or the help we need now, but hey, the rules are created by non-disabled people and they are politicians who don’t get stuff. What can I say?!

Both these schemes for the boiler and the insulation were brilliant. I am so truly thankful for their assistance I have no words to describe it.

Security.
– also recommended to us by our local environment team was a charity called the Blue Lamp Trust which covers England & Wales. It’s a security charity of which many employees are ex-policeman and so they really know their stuff. They help a lot of domestic violence victims as well as disabled and elderly folk. I’m home alone and non-functional most of the time so I had highlighted a security concern and said I’d appreciate some input and advice. What I actually got was lots of really good security advice on all fronts and even more than that… including two new smoke alarms, a door chain, a door bolt, three different planned fire routes for us to get out in the event of a fire, tips on how to handle cold callers (in person and on the phone), he would have given us a carbon monoxide detector as well if we hadn’t have already gone and bought one, and even some tips for avoiding identity theft. In addition to all that he was an absolutely lovely chap who used to police our area so knew it really well and he didn’t even complain when I made him a bad cup of tea!

Blue Lamp Trust

So (for England and Wales) if you’re one of my fellow disabled or if you know anyone vulnerable (including victims of domestic violence) who would like to feel safer at home I can recommend contacting the Blue Lamp Trust through their Bobby Scheme.

Other than that it’s been typical do-er upper work!

We bought a place with the space I needed as I’m stuck at home unable to work. At the old house we had no space so if I wanted to try to do anything I lost most of my activity time to setting things up and then putting them all away again so I couldn’t actually get much done in between at all. Now we have more space so I can (eventually – once we get the boxes unpacked) set things up then just leave it where it is for next time. Reducing my set-up/put-away time and increasing my quality of life. Hurrah!

To get that space we had to get a do-er upper though. Houses ready to live in were too small and houses with space were in need of er, most things! So we bought a place that was well under our budget so we’d have some money to get it liveable, but we still couldn’t have done this without the help of the crucial grants. Thanks to the grants covering the boiler and insulation we had the money to get the dangerous old 1950s rubber wiring replaced throughout, get the two-level floor (with a steep ramp between the two where a wall had once been removed) amended to one level to stop me from tripping over it when I’m struggling with symptoms and a new kitchen (because we had to rip the very old one out to get the floor levelled).

Ta-dah! Money gone! So now we’re on to good old fashioned home DIY (‘Do It Yourself’).

Gosh I’d love to sleep in a bed! And have somewhere to put my clothes. And not have eeeeeverything re-covered in dust each day! But we’re getting there. Albeit slowly.

Cooking in kitchen

Our kitchen after the floor had been levelled

It’s been nearly four months since we moved in. It’s great to no longer be cooking on the camping stove and I’m chuffed to not have to wash the dishes in the bath any more although I am still washing my hair in the kitchen sink when I can stand up long enough! The shed now has a roof (storage space to reduce the amount of crap in the house!) and we’ve re-purposed the old kitchen units to go in there. I’m pretty chuffed with how that plan came together. Poor Magic Dude was so terribly down about living in such a building site so I arranged a surprise for him – his bestest mate and my lovely bruv came round one day whilst he was at work and we sorted out most of the shed roof. I say ‘we’, but that’s pretty cheeky as I couldn’t do much of course.

He was in shock for several hours after he came home and found what had been happening in his absence but eventually he started nudging me from time to time and then grinning at me! I had hoped it would help him out of the doldrums but the effect was way bigger than that as he got really enthusiastic again and threw himself at the remaining shed jobs with gusto. It was flipping wonderful for us three to be able to help him so much with a plan so ‘simple’.

Shed roof

One very holey shed roof!

I say ‘simple’. None of us had done anything like that before. We researched it thoroughly and then kinda made it up as we went along. 😉

After much removing of carpets, fire-hazard ceiling tiles, wallpaper, filling of holes and cracks, sanding of well, everything… we are fiiinally about to be able to paint some base coats on a few walls. In fact Magic Dude is doing exactly that as I edit this and I want to go and see but can’t get up, waaah! I’ll get to see it later though. And we still have the dyeing and varnishing of the upstairs floorboards to do (another thoroughly researched but totally new endeavour)!

So we’re getting there.

Slowly.

And my pain levels are worse because anything extra throws them out. I work hard to pace my daily activity but have found it easy to get too involved and overdo my morning physio so I then do less for my evening physio to balance it out. This then means that I’m doing different activities to usual and training my body to be more flexible on how my daily activity is grouped when it really is much more sensible to only vary one thing at a time. Still, I’ve done pretty well restricting my activity to the crucial paced time per day overall during all this change, tradesmen noise and long list of stuff that needs doing.

Magic Dude has now driven me to a few Tai Chi classes whilst he’s been off work to try and help me normalise my paced activity a little more. I’m learning a new and challenging style (Chen) so that’s a good distraction to think about between paced physios. And when thinking isn’t distraction enough to help me cope with the pain I resort to immersing my senses in Lord of the Rings Online for a while.

Me, decorating

Sometimes I’m able to help out a bit during my daily paced physio time

So, I guess to sum up: I’ve moved home, I live in perpetual dust, I’m trying to convince my lower torso get involved in Chen style Tai Chi and I’m nearly out of the dangerous tunnels of Moria! 😉

xx

CRPS Awareness photo challenge: time

Photo challenge: The biggest roadblock in my life other than pain.

Time.

Suzy's photo challenge, 2015, day 16

 

 

I have limited activity per day re pain management.

I have limited activity, functionality, independence per day re the worst of the Dysautonomia symptoms.

I have limited ability to think, process and get brain stuff done because when I use my brain I can only do so for a while. Then it falls over and stops functioning and I’m blooming useless until it recoups. How long that takes depends on multiple variables.

With pain management and brain time it is the unexpected opposite… use it and I lose it. Every time. Though there’s no guarantee that I’ll have any type of functionality at any given time either .

So time when I’m able to think and do is so precious because of its rarity and fleetingness.

x

Yes I still exist (honest guv’)

Imagine my surprise when I realised I hadn’t written a blog post since the end of last year! Lawks! I’ve been writing drafts when I can but poor ole Betsy the laptop has usually (always) got too many browser tabs open to cope that well! How is it possible that time passes by so quickly these days?!

I have been posting on the Facebook page though of course. Just never seemed to get to complete a blog post. The main reason has been lack of Brain. It pops in now and again but it doesn’t hang around as long as it used to. So I realise I need to change my way of writing to accommodate this change because mostly it’s resulted in me not writing. And as writing has become a love of mine I have been getting twitchy!

As I’m in the UK I was initially dealing with the tail-end of the continuing coldness through the Winter. Always a toughie getting through to the Spring, eh? Pain levels are up, natural vitamin D intake is down, relentlessness is the name of the game and by the end of Winter (well deserving of it’s capital W) we are begging and pleading the weather to bring Spring to us so that we can start recovering.

Winter was actually pretty mild here, but that just means that I wasn’t at quite such an extreme of my wits end, y’know? Winter is *always* hard. Springtime rocks!

I’ve been having some more health issues and I’ll write more about that in due course, but initially it appeared like it was a crazy-arsed allergic reaction to anything / nothing / everything which lasted all the time / 4 random minutes at a time / stopped for a few hours then came back with a vengeance. It was pretty weird. And yes it became apparent that it was so bizarre that it was reminiscent of my respiration issues a few years ago, so I knew it was a systemic overload which had to be stopped. Hence.. more on that in a separate post.

In March I said “yes” to a concert because I figured how could I not? I mean, it was in Winchester Cathedral, maaan! Beautiful! I didn’t realise just how cold it would get in there or that I should’ve dressed for the outdoors to better manage my pain levels, but fortunately they had some doghouse sized radiators to cuddle up to! So yeah, I went and saw Anathema perform acoustically in a gorgeous cathedral. It was stunning. Truly fabulous.

There are a few cathedrals around the UK who raise some of their funds through events like this so if you get the chance… dress warm, take a cushion if you need one, and because it’s acoustic it’s not like you’re gonna get your head blown off by mega-speakers so the volume is more compatible with sensitive ears (though if you’re unsure I can recommend the noise-reduction earplugs as they reduce the volume without muffling the sound).

Winchester Cathedral acoustic concert, Anathema

How stunning is this?!

 

I’ve also had the wonderful experience of two fellow CRPSers travelling from their home countries to come and visit me in real-live-3D, wow! That will also be a separate post because it was so fabulous 😀

Two of my friends got married and Magic Dude and I attended the sci-fi wedding in Star Wars fancy dress. Which I made with my own fair hands, I might add! My sewing machine and I are no longer nemeses, we have made friends and now I wish I had more time during which I am more functional to make some clothes. I now have a new creative project with the sewing machine which I’ll post about soon, too.

And for anyone wondering… I am dressed as Jareal (after the make-up has come off and been re-applied a gazillion times X-) ) who I found out about by researching the comic characters, and Magic Dude is dressed as Plo Koon who was briefly in one of the prequels (very briefly – when asked about his choice of wedding costume he said something like “you see him in one of the spaceships for a moment and then he dies”).

And of course that same month we had the UK government election. Voters were at a loss who to opt for if they even voted at all, many didn’t. The ‘majority’ on our ‘first past the post’ system was a shock. The majority means the party who got the most votes, even though the people who voted for them are actually in the minority of the voting population. Even weirder, our system is set up for the main parties and to keep smaller parties at bay. So this means that votes for the Conservatives adds up to more MPs from their party than exactly the same number of votes would get for another party. I know. Don’t ask. It’s so out of date. Anyway the shock factor was massive. No-one expected the same government to be voted in again. Not even the government peeps themselves! Many of my disabled friends were in tears at the news – welfare cuts have been horrific here with the poorest and most vulnerable getting hit multiple times through different cuts. The new welfare ‘assessment’ process is causing mental health issues to the extent that there have been suicides as a result. Before getting re-elected the government promised a further £12billion welfare cuts so you can see why so many people were in tears. I seemed to last a while in shock until Magic Dude’s Dad said something blinkered and I burst into sobbing and couldn’t stop for some time. The UN is now running a second investigation into the state of human rights in the UK to expand on their earlier investigative report.

So yeah, now I’m an activist. As it turns out. Not just a health activist any more, but an activist for the poor and vulnerable generally. I can’t do much in my state of ill-health but there are petitions I can sign, ideas I can bounce, people I can help. Being chronically ill isn’t going to stop me from caring about others and doing what I can to help reduce the additional shitstorms coming their way. Takes up quite a bit of Brain Time of course, another reason I have been so absent from the blogging as usually May is the time of year when I would begin to manage to write a bit more.

So anyway that’s enough for the body to have to handle whilst still working through the months slowly recovering from Winter, right?

But I’ve also been doing my usual full-on overdoing it for one day in April and one day in June at Tai Chi tournaments. As you know it takes months for me to recover from Winter and weeks to recover from each tournament, so the overlap of tournament with Not Recovered From Winter Yet is substantial. But I do it because I am so limited and restricted every day that pushing myself for two days per year feels worth it because although the aftermath is horrific the memories last far longer. 🙂

The April tournament this year was not the usual nationals in Oxford but my first ever Europeans. (The Europeans were originally going to be held in Latvia and so this was a last minute alternative and much more viable for me to get to).

I performed the Sun Style 73 form which is not a flowery style so I have to show my understanding and skill levels in different subtle ways, so that was my challenge. I also performed the 42 form (a tournament form incorporating 5 different styles of Tai Chi) so performing two different things at one tournament was also my challenge. I was a bit awed that my teacher had put me in the advanced/open section whilst I am still officially at intermediate level, I guess that was also my challenge. Hey wait a minute? How many challenges am I fool enough to take on at once here?!

I was amazed that I ended up with a silver for my 42 form (with two lovely ladies from the Netherlands either side of me with gold and bronze) and a good score for my first ever tournament performance of Sun. But more fabulous was the fact that this was the first time that I’d been part of a larger team. We’ve only had a maximum of 3 of us there before, but this time we had a whole gaggle of us. Some in beginner, some in intermediate and some in the over 55s. Everybody in the team was supportive and encouraging to each other, and lots of fellow Tai Chi-ers there were positive towards us too. In fact I was so pleased to find out that my teacher had been told that her team were notable for their friendliness and positive attitudes. What a fabulous endorsement for her first event managing a larger team. 😀

Tai Chi, 2015, European silver

The next day I met up with my lovely teammate who also has chronic pain and was staying in the same hotel. We have travelled our Tai Chi paths alongside each other these past four-ish years and we have cheered on each other’s progression with such joy because it’s one heck of an achievement in the face of our respective health issues. I hobbled from bed to lift, and from lift to comfy chair in the hotel lobby. I sat in one chair with my feet up on a second, had my hot water bottle under my legs, blanket over the top, painkillers in my bag and he had been his usual sweetheart self and got the coffees before I got there. Several hours later we were still there nattering away. Movement was not very viable for either of us and it was great to be company for each other through the pain levels.

My lovely Magic Dude turned up later with the wheelchair so that he could get me out of the hotel room the following day. We went into Oxford town and I went camera crazy as I always do when I actually get out somewhere! It was really lovely to get to see the city this year. That wheelchair makes such a difference! 😀

Oxford, bicycles.jpg

Pictures obviously included bicycles (and many many grotesques and gargoyles on the old buildings)….

Oxford, Bodleian library

…the inspiration for Hogwarts main school hall in the films (Bodleian Library)…

Oxford, street pianist

…and a pianist on wheels who was super-prepared for any sudden change in the weather! Totally normal, nuthin to see here! (Actually his piano playing was gorgeous).

The weeks between the Europeans and the June Nationals whizzed by and I was not in great shape healthwise (starting the tournament day with the screaming ouchies in my left leg at a mean 8.5/10, boo!) but I managed to get the pain levels down a bit to perform in Sun Style at my intermediate level and got a good score considering I was racing through the 5-6 minute form to complete it within the required 4 minutes *and* I added in an extra move by accident, too! X-) Being able to get a decent score with Sun style was my aim. And extra wonderful was that my teammate (yes, that same friend) got the exact same score for his multiple-style 42 form and so we ended up on the podium together with joint silver, wow! I can’t tell you how awesome it felt to be standing there with my friend sharing that achievement after coming such a long way together in our journey to help our health situations. There really are no words to describe the singing glee in the soul but it was flipping wonderful! He’s put in phenomenal work to get where he is today using both physical and psychological tools to find the best pathway round the health stuff. If anyone deserved to be standing on that podium it was him, and I found myself standing on the same podium with him which felt so perfect that I wasn’t on a different podium or even a different level – we were on there together. Go Team!

I also entered the advanced/open section with the 42 form, managed to fluff it up in amazing style, made it look like it was meant to be that short honest guv’, and ended my performance somewhat (a lot) earlier than I should have, har! A good score considering the extent of my very silly error, and some wonderfully positive words from head judge Faye Yip telling me to come back next year because I have “potential”, yay!

Oh and no wonder my body has been so screwed because the classes that I use for physio’ include adaptive Kung Fu in which I have got my red sash and first level brown sash this year too. I’m not entirely sure how I managed to achieve those! Although the brown grading was during the heatwave and my legs were glad of it even if my nervous system wasn’t! My body needs more tiiiiiime, man!

And yet I posted on my personal Fbk wall the other day that it would be nice not to have to deal with people telling me that I am “lucky” to “not have to work” / “get to stay at home all day” because I get those sort of comments as a result of how people see me when I am out of the house i.e. looking ‘normal’ because I am doing my physio’. If only they could see me the rest of the day eh? Needing a wee and not being able to get to the loo in the adjacent room, wanting a cuppa and having to wait several hours til Magic Dude gets home and can make me one. Ah well, people just don’t get it eh?! 😛

And then we were getting the house ready to put up for sale. It sold at the end of July and we’ve been searching for our new home ever since. Not sure how much longer our buyers will hang in there but if they pull out it’ll sell straight away again. The market here at the moment for the main price bracket of £120-210k (your basic 2-3 bed homes with the usual squished space that we have in UK houses) is basically at about 15 buyers per house. Apparently we wouldn’t have the same extent of trouble if we had £210-250k. Oh if only eh?! Har, dream on!

We need some more space y’see. I moved into his one bedroom place and so nearly everything I own has been in the loft for the last 5 years. If one of us wants to do something creative there’s no space to set it up and leave it so most of my physio’ time is taken up with getting everything out and setting it up and then putting it all away again afterwards which doesn’t leave much time for whatever the activity in the middle was supposed to be (I want to get painting again). So yes we need a little more space but also….an enclosed garden. Currently we only have an open outdoor space between the house and the pavement out the front. Apart from how nice it would be to have some private space the main reason is (dahn-da-da-daaaaah…) we wanna get a dog! But the housing market is slowing down for chrimble so I’m expecting our buyers to pull out sometime soonish and that we’ll be re-selling in January when potential new homes start to show up in greater numbers.

So with fewer house viewings taking up my physio’s I finally have some time again, wheeee! Except for how that creative project I mentioned will now take over any available physio’ time. I look forward to sharing that when all the material has arrived. 🙂

Anyway, now you know I’m still here.

Phew! That was a heck of a catch-up!

Loves xx

Send in the clowns

Well here we are again. Well done people, you’ve traversed another year. Whatever you’ve been through this year, the ups, the downs, the wibbles, you’ve been awesome. You’ve hung in there and here you are now reading about my own little adventure new years eve.

I went out today to run some errands. It made me realise how long it’s been since I drove myself into town for a physio’. I was actually a bit nervous about going so far from the house on my own with no-one to meet there ‘just in case’. But it was a successful trip. The festive market has gone so there’s more pedestrian space, and the multitude of shoppers has thinned back down to a more usual amount so I didn’t have to wait in any long queues, hurrah!

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Christmas lights

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I bought some Christmas cards for next year (I know, organised eh?! hehe), a notebook for my upcoming free online course on medical neuroscience and some beer for Magic Dude to swig at midnight tonight to see in the new year with me. But I also grabbed some unexpected additions: some cute lights to hang from the mantle piece and a reindeer decoration for the Christmas tree. Oh, and obviously I needed a Batman biro with multiple colour options. And a glittery travel mug. Obviously. 😉

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New Years Eve buying

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Living with chronic illness does tend to be a bit of a circus at times so new years eve is often pretty hard for many of my fellow patients out there. We tend to find the laughs, silliness and smiles where we can but some times are harder than others. Which is why I want to share this…. I fell about laughing when I finally saw this following little ditty last night which may become my theme tune for 2015….

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Imagine leaving a doctors appointment where we’ve seen a practitioner particularly lacking in knowledge specific to our conditions – what a circus. What better to cheer us up than to sing quietly to ourselves as we leave…”dah-dah-daddle-uh-da-dah-dah Circus…”! By the time I get to the bit about polka-dots I expect I’ll be chuckling. We’re stronger than we think.

Sending best wishes for the new year to you all,

Love from me

x

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P.S. Here’s a version in multiple languages. Just because. 😉

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Totally Tubular (Dumbarse) Tuesday!

I just found this draft from last winter and decided to finish it off and share it.
As you’ll see… you’re not alone with the Silly Brain stuff, but more importantly this post is about change being the only certainty with these conditions and crucially.. change can go either way.

So Keep On Keeping On is definitely the way to go. Sometimes we can be surprised by some good changes. 😀

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Last winter:

I started the day like a boss dumbarse.

It seemed okay at first: Magic Dude got up for work at Stupid o’Clock and I actually went back to sleep. Sleep! Awesome!

When I awoke I was lying there thinking I should get up when there was a knock at the door. I made it downstairs and stared bleary-eyed and incomprehensibly at the woman on the doorstep. She’d come to read the electric meter. Fair enough. I then went to look at the time… Ohgoodgrief it’s 10am – 30 minutes to get ready and leave for Tai Chi, eeeeek!

Yes, it’s Totally Tubular Tuesday! Which means that I have two physio’s today, but that they’re cool physio’s that I’m super pleased to get to do – Tai Chi and adaptive Kung Fu.

So I managed to throw clothes on and and shove my contact lenses in. Ruuuuush!

Then I Iooked at the time again.

It was 9am.

Dumbarse!

So I carried on getting ready at a more leisurely pace. Today is the only dry day for a while so I had to hang some washing out. This is the worst day I could possibly have to do it on as I have both physio’s taken up with my classes, so it means that hanging washing is extra activity which is baaad news for the pain levels. And as it’s winter here the pain levels are already dreadful as the cold takes hold.

But I did it. Hurrah! Washing hung outside. Breakfast eaten. Multiple tablets and supplements taken. Fluids imbibed. I even wrote christmas cards for my Tai Chi and Kung Fu classmates.

I got to Tai Chi on time. Or so I thought. I walked in and everyone had started already. I hate being late for anything. I can’t do the Chi Gung any more as this med’ doesn’t stabilise my ANS as well so I get too faint to Tai Chi if I do the Chi Gung. So I plonked myself down and did some stretches through the standing still bit, then I joined in for some Chi Gung arm movements whilst sitting down to reduce faintyness.

Then we all performed the Yang style 24 form together with the official music. I was trying to include the corrections I’ve been learning but my brain is always off after a bit of Chi Gung so it’s guaranteed to be sub-standard the first time!

Then I hurriedly swigged some weak tea from my flask and poured it down my tee-shirt. In front of my teacher. Awesome.

The rest of the lesson was dedicated to brushing up the Sun style 73 performance. Apparently I have claw hands today. *sigh* Blummin’ dystonia! My teacher was showing me how to smooth out one particular move. The correction is reeeaaally straight forward. I know it is. And yet I found that without the move beforehand I could not work out how to do even the basics of the move we were working on. That’s not too unusual for me, but then I found myself watching her show me the move several times in a row and I realised that I did not recognise the move at aaaall. I had no knowledge of what she was doing. I knew I did really, somewhere in my brain, but it’s the first time I’ve not been able to access something like that even when it’s happening in front of me. It was not an enjoyable CRPS Brain moment. 😦

you're always on way way to someplace more

But you know what? This is just part of that thing called Shit That Happens. So all I can do is acknowledge the brain anomaly and move on. No need to dwell on these things as it will make me sad. Move on. I’ll know the move another day.

So I practiced what I could so that I got some activity for my body during my allocated physio’/Do-Stuff time.

Then I got my christmas cards out and found that I’d brought some of the Tai Chi cards and some of the Kung Fu cards to the Tai Chi class. Ugh! Stoopid brain. It probably looked like I’d forgotten to write cards for some people. *sigh* Hopefully they know me better than that, though. 🙂

Then… gosh I’m so classy…I choked on my lemon barley water and coughed a lot, bringing my ‘happy christmas’ convos to an abrupt end. Waving goodbye to people I got outside and proceeded to do the whole whooping cough thing whilst bringing up scrummy mucus into my mouth. Yum.

This is all fairly typical for a Tuesday, I really struggle with the two classes in one day, but they are both important to me and I do them during my allocated physio’ time so they are not extra. (And usually there wouldn’t be washing to hang up).

So, off home for 6 hours of attempted recuperation with fluids, hot water bottle, cushions to prop me up, blanket etc, then on go the compression stockings again and back to the martial arts gym. Double checking the christmas cards before I left.

When I arrived home from Tai Chi I found that the washing had been rained on and was now sopping wet again. All in-keeping with the theme of the day I guess!

And yes I still went to my adaptive kung fu lesson. I made it through despite nearly passing out whilst standing still and holding a target up for someone else to practice kicks past. Standing still is blood-pooling-tastic eh?!

It may look like I'm doing nothing but

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Today:

Now that my teacher is back from the Tai Chi World Cup in Taiwan and has finished winning gold and silver medals for a while she has got stuck into running a new class which started today. And yes, I was there for the first of the new class which is all about strength and conditioning.

As any pain patients know – pacing is the key to a lower pain baseline, and as any hypermobile patients know – pacing is jolly useful but strengthening muscles to help reduce the bendiness is pretty awesomely handy.

So that’s what I’m working on: strength and conditioning the parts of my body that I a) need to improve for Tai Chi tournament purposes, b) which will reduce various hypermobility issues and c) which is all done within my daily paced physio’ time so that I can do so without exacerbating my pain baseline.

spoons

I wrote a while ago about how the med’ I’m taking to help stabilise my Autonomic Nervous System (ANS) issues somehow remained pretty crap until this Spring despite starting it in the Autumn before. I don’t know why that is but I certainly wasn’t complaining when I could not only join in with the Qi Gung in class again but I could even shut my eyes without immediately keeling over. Wow! What an improvement! The dystonia reduced in severity too. It’s always worth talking to your doc’ about any tweaks or alternatives because tiny changes in med’s can result in substantial improvements in our uber-sensitive bodies.

This year I’ve worked at the Tai Chi and covered some of the lessons as substitute teacher that I would usually attend as a student as part of my physio’ anyway. (A physio’ spent teaching gives me a different insight into my Tai Chi and is a whole other learning curve. And definitely a challenge)! I’ve also worked at the adaptive Kung Fu, trying to adapt as little as possible as it’s within my daily physio’ remit but there’s always odd little aspects that I need to be careful about (e.g. when my heart goes dysrhythmic, when I get faint and working round issues such as my degenerative hip joints).

But as you can see from my draft above that I wrote last Winter… I am doing better than I was last year in some rather important aspects.

set backs and come backs

Admittedly my proprioception still goes awol and my teacher has seen me pour drink down my top many times. Even as recently as Thursday in fact! Ah well. I still have all the same issues with my health, and many are worse because that’s just the way it is, but that doesn’t mean that I can’t make improvements in important ways. And it certainly shows that my determination to keep at the physio’ pacing keeps paying off endlessly.

So finding my draft from last Winter and re-reading it was a pretty good experience for me. If you journal you’re probably telling me through your computer screen that I should try journalling more often eh?! 🙂

My determined physio-ing and my med’s tweak have helped me to build up to working on stabilising the most hypermobile areas in my body. It would be awesome to experience less subluxation of my shoulders and sacrum, and if I can do the strength and conditioning exercises as a tougher physio’ each week then my ANS should be more relaxed about the lesser activity the rest of the week. Or at least that’s what I’m hoping based on my past experience.

I’ll keep on keeping on anyway. Winter is not quite setting in here yet, the changes in weather are wreaking havoc with us Painies, and when Winter finally sets in our pain levels will rocket even more. So I need to be on top of my physio’ schedule to make it through to Spring with as few setbacks as possible. I don’t know where I’m headed so it’s all about doing the best I can for my health. I guess I’ll just follow whatever path turns up under my feet. And if I go backwards that’s all par for the course, it’s just setting me up for another comeback, right?

Feeling determined!

look at how far you've come, rather than how far there is to go

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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

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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