Inspiring addition

I was window-shopping online during a time of brainlessness and I spotted a cushion cover which made me feel inspired.

We are often told we “can’t” do things and we soo often feel that we “can’t”, especially as we have a tendency to compare our abilities with that of our former selves. Change over time happens to everyone and we are being rather unfair on ourselves by comparing the me-now with the me-in-the-past, and extra unfair by focusing on what we can do instead of who we are. Change happens to everyone in various ways. And yes our health changes can be pretty massive, but the way forward is helped enormously by the way we view things. Our reality involves our perception of it. And perception plays an extra big part for us when it comes to coping skills and finding the positives.

Being able to turn those “can’t”s around into “can”s is a truly fabulous feeling. And feeling inspired is often such a floaty-light moment of gloriousness where we rediscover our smile, our hope, our confidence, our determination. It is not to be underestimated or neglected.

So I bought that cushion cover for myself. Every time I looked at it online I felt inspired so bringing that inspiration into my home where I could see it every day seemed eminently sensible!

It arrived yesterday, having travelled all the way from Australia, thanks to a shop on eBay…

Inspirational cushion cover

And the monkey was a pressie from, and created by, one of my friends from school so he makes me smile too. He and the cushion are a pretty good pairing!
(Thank you Jaime, he’s been enjoying sitting on the chair by the window in the front room). 🙂

What inspires you?

Is there something you could move to a more prominent position so that you feel lifted when you most need it?

x

CRPS patients and dentist appointments

Many patients ask for advice about what they should say to the dentist about their CRPS. Some dentists have come across patients with neuropathic pain, but may not be familiar with the extent of involvement of the central and autonomic nervous systems in CRPS. Or of the possibility of CRPS spread after dental treatment without sensible precautions.

dentist2

(picture source)

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So here’s a list of helpful tips for you and your dentist to reduce the nervous system response to treatment…..

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Relax the central nervous system beforehand if possible (e.g. laughing gas)

DO NOT use anaesthetic with adrenaline/epinephrine in it (because our ‘fight or flight’ is wacky enough already, making it even worse is to be avoided)

– You may require more anaesthetic than our healthier counterparts out there. Particularly if you are also hypermobile, ‘double jointed’ or have been diagnosed with Ehlers Danlos Syndrome (EDS). (The absorption of local anaesthetics can vary from the ‘norm’)

Limit treatment sessions to 15-20 minutes (to help the body calm down and recover afterwards in a more timely manner and to avoid any long-lasting issues)

The dentist should also give you another dose of the local anaesthetic before you leave (to give your nervous system longer to calm down before any resulting discomfort kicks in)

Ask the dentist to write this information on your medical notes so that you do not have to remember to tell him/her every time you visit them

– After any invasive treatment it is helpful to take vitamin C for 2-3 weeks, 500-1000mg per day (to help the nerves to recover) NB: the body can only absorb up to 500mg in one go

– Set aside time after the appointment to rest and recuperate. (It is important to allow the nervous system to calm down and to keep it calm, if possible give yourself a rest day the next day as well)

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These are tips and suggestions founded in the scientific understanding of CRPS. Some are more crucial than others, but all are worth doing if at all possible. For example, my dentist does not do the calming of the central nervous system first, but then again I’m pretty good at calming myself anyway. I always insist on non-adrenaline (non-epinephrine) anaesthetics as the effect on my heart rate and near-syncope (near-fainting) is pronounced. And a good dentist should always ask you if an area is sufficiently numb anyway. Once the dentist knows about these things then they should become the norm whenever you go in for treatment, including the post-treatment anaesthetic and just doing one thing per visit (unless you’ve both agreed otherwise for good reason and with counter-measures in place, of course). A good dentist is worth a lifetime’s tea! (Well, maybe a month or two, not sure I could give up tea for life!) 😉

If you’re just going for a check-up.. the extent to which you need to do the above will vary per patient. For some people these are still important, for others just keeping calm and resting afterwards is enough. Discuss your issues with your dentist and choose what works for you for check-ups.

So there you go, some tips for CRPS dentist appointments. I really hope that this helps.

Much love from me,

x

Caring for yourself is not selfish it is survival

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An NHS link you can show your dentist re hypermobility and anaesthetics not working so well is here.
(This link courtesy of my fellow blogger the Hypermobile Hobbit, x)

How to stop laptops from falling on your head

I awoke as Magic Dude got ready for his early shift this chilly Sunday. I found that my hints of a sore throat had increased overnight and I was warm and yet really cold at the same time. Uh-oh, I can’t afford to be ill, the knock-on effects with my condition is severe and I have studying to do that I’m already way behind on. So my lovely Magic Dude brought me a cup of tea and the laptop before he left and made sure that I had ‘warp capability’ (i.e. that the wifi was switched on 😉 ).

I set the laptop up on  the adjustable-height stand (which is an absolute saviour for allowing me to use the laptop without putting the weight on my CRPS legs) but the near-fainting then decided it wanted to join the party (one of my Dysautonomia symptoms) and I had to lay down. So I did what I have done before…. I cranked up the height of the laptop stand so that it looked like this…

Elle and the Auto Gnome, laptop stand at max height

My eyes must’ve thought they were missing an opportunity coz they then decided to join in, too. As I tried to focus on the screen my eyeballs roamed around misbehaving and not allowing me to see what I was trying to look at. It was all getting a bit silly, and then when I then moved my painful legs the laptop fell on my head!

Ouch!

I can read the signs. When they’re as unsubtle as this it’s kinda hard not to! I took this as a suggestion that I put the do-stuff idea to one side and instead I snuck back under the covers and phased in and out of sleepy consciousness until midday. Not the norm’, but managing this condition includes knowing when to say ‘zzzz’. Most of us with CRPS and/or Dys’ are familiar with endless lack of sleep, so when a day arrives where my body will try to fake some not-quite-sleep then I’ll take what I can get, thank-you!

Now I’m up, I’ve done my first physio’ of the day, and I’ve finally sought out the other half of the velcro the Open University furnished me with. The laptop stand that was sent out to me to help me to try to study despite the health issues was already decorated with a couple of strips of velcro. The idea was that I would then stick the other part of the velcro to the laptop so that it would not move on the stand or, in the case of a near-fainty person, it would not be quite so likely to fall on my head! But the laptop was so shiny and new I couldn’t bring myself to deface it with ill-person-velcro! Hah! Not so any more, I have velcro and I will use it. My head demands it! 😉

Elle and the Auto Gnome, laptop stand with velcro

It’s funny how no matter how comfortable and accepting we become with regards to our conditions and limitations, there’s still the odd little thing which we get stubborn about on principle. It’s taken me nearly a year to get to the stage where sticking bits of velcro on my laptop (my constant companion and portal to the outside world) does not seem such a violation of shiny tech or such a feel of being abnormal enough to require velcro. Daft eh? But truly, if something works, make use of it. That’s how we enable ourselves to do more.

So onwards with the velcro! My little interim task for the day!

x

10 things of great value and assistance to me

We all have things that keep us going, and tricks we use to lessen our symptoms. Without certain items we would have more wobbly pain-days. Here is the list of the top ten ‘things’ that I find keeps me going and helps me to manage my pain levels.

1. First and foremost is not a ‘thing’, they are the people in my life. My fabulous boyfriend (aka Magic Dude), and those of my amazing friends and family who have hung in there even through the very weird period of time where my cognitive issues caused all sorts of problems without me knowing it at the time, as well as my new friends who I already feel like I’ve known and loved for decades. You are a-ma-zing. I love you all. Thank-you. You are the shining gorgeousness in my life that keeps me going and keeps me grinning, xxx

2. My beloved laptop! Which I don’t love for the spec’, or the brand, or the colour, (it’s statutory black and it does what it was designed for), but for the access it gives me to the wider world as well as the flexibility to use it wherever my body can handle being at the time.

3. So I’ve got to include the laptop stand, of course, because that is what allows me to use the laptop in bed or on the sofa without having any weight or pressure on my legs, (which would send the pain rocketing if it did).

4. Oh, in which case I have to use another number being grateful for the Wifi connection, which removes the painful frustration of wires limiting my comfortable seating options! I feel a bit cheeky including aaaaaall of the wonderful people in my life under just one number, now, hehe. I didn’t really create any rules for this list, so I’m just making them up as I go along! 😉 At least I have six more numbers left!

5. Tea! Oh I am grateful for tea! Tea definitely keeps me going. 🙂 There’s some amazing psychology involved in my drinking tea. I grew up in a house with no heating, so the first thing we would do on returning home is put the kettle on. A cup of tea was both warming and comforting. It became a habit, even in warm months, and by the time I lived somewhere with heating the original reasons were moot. I was a Tea Drinker! The amazing psychology for me, and for many people, is the wonderful calming effect it has. It makes me pause for a moment and just ‘be’. And that’s no bad thing. (I am aware, of course, that caffeine excites the nerves, so I drink it weak and I have different fluids during the day as well, but nothing beats a nice cuppa)!

6. My mobile phone. A practical choice. I hardly ever use it other than to check the time so that I don’t go over my physio’ limit and set higher pain levels off. But it is a reassurance when I am out alone as it means that I cannot, in effect, get stranded for too long if I take a turn for the worse. Thanks to the phone in my handbag, help is always a phonecall away and I can dare to physio’ a bit further than I would without it.

7. I have become a dab hand at ‘controlling’ my pain levels and make sure that I am near seating when I know that my pain is ready to soar, but nonetheless I should mention walking aids. Sometimes I’ll take my fold-up walking stick with me and hide it in my bag just in case I need it. (It’s a great magic trick! If you’ve got one… watch the faces of the general public around you as you miraculously keep pulling a massively long stick from a smaller bag! 😉 ). I take it with me if I get sharp warning twinges before I leave the house that could develop into something more. Or if I am unable to exactly plan my outing with regard to rest stops, then I take it with me so that it’s there as back-up in the event of any unforeseen eventualities. I am so stubborn and determined to do ‘proper’ physio’s where I carry all of my own body-weight that the crutches only ever come out now if I literally cannot take any weight on one, or both, of my legs owing to seriously severe pain. In those cases they at least enable me to get to the loo. And they allow me to rest the leg(s) to get them back to a more viable state more quickly. (Then I’ll carry on physio’ing). And the wheelchair only comes into play if I know it’s going to be a long day out. I only can handle so much activity each day, that’s how I ‘control’ the pain levels. (I’ll write a post about this when I can). So any more than that and I need wheels. Although the pain also rockets when I’m stuck in the wheelchair, it’s not a comfortable position at aaaall, so I prefer to factor in a coffee shop stopping point for a looong rest where I can use one chair to sit on and another to put my legs up on.

Ta-daaah!

8. Blankets and cushions are brilliantly useful. Keeping my legs warm keeps the muscles from tensing up and the pain levels down. Just as cushions can be used to ease any pressure points (my left hip is a prime misbehaver since the ligament was torn by a very silly specialist, and the pain there is either ‘bearable’ or ‘screaming’, it doesn’t do shades of grey), or to raise my legs to help calm down the pain in them, or to keep my neck from spasming and setting off a migraine in the car, as well as supporting my head when I’m using the laptop to avoid migraines as much as possible at home. Very handy everyday items that I could not be without. If I was without these in my life I would experience a ‘lot’ higher pain levels day-to-day.

9. Hmmm, on the same vein of usefulness is my hot water bottle, complete with furry cover. The cover is important because I need warmth, not burning! I use it for my legs pain. Like with the blanket it eases the pain in a similar way. But I use the blanket all of the time, whereas I turn to the hot water bottle when I cannot ease the pain myself without an external heat source to get my muscles to consider relaxing.

10. Notable for its absence thus far on my list is pain medication. Unlike patients who are lucky enough to be taken under the wing of a pain management team with knowledge about CRPS, I was one of the many patients who ‘fell through the net’, as it were. After six years with CRPS I received a diagnosis, but I still didn’t meet any medical practitioners who knew what to do about it other than show me some physio’ exercises and send me on my way. As a result I had nothing but exercise information and some painkillers from my bemused primary care doctor. So that’s what I did…I did the hideously painful exercises every day for a loooong time, (I’m unbelievably stubborn, as it turns out! 😉 ), because, hey, what was there to lose? I was in pain anyway, right? Eventually my ANS took the message on board and flicked a switch somewhere – I turned a corner in the behavior of my pain and so began my lifelong physio’ ‘control’ of my condition. (I seriously will write a post about this stuff, xx). I eventually got to the point of stopping the prescription painkillers. (I hate the floppy, vulnerable body, wafty headed, dribbly mess they turned me into, anyway). So now what I take with me when I go out is over-the-counter co-codamol painkillers, and over-the-counter anti-inflammatories. They’re with me in my handbag, but they remain untouched unless it’s a pain emergency. The painkillers are taken occasionally, (usually in phases of pain-flares), but the anti-inflam’s are taken rarely (only if a migraine is too far gone whilst I’m away from the house) as long term use of anti-inflam’s isn’t good for our innards and I figure that I’ve got enough on my plate already! 😉

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Just a few weeks ago I would have included a flask of weak lemon cordial right near the top of the list. I took it everywhere with me because of the severe and continuous near-fainting meant that I needed to constantly top up my body with fluids. But the symptoms have calmed down to more manageable levels now that I’m taking new meds for it. I always take some if I’ll be doing activity, though, like when I go to my Tai Chi class. It may be something I have to start carrying around with me again, but I shall wait and see until the meds trial period is up, and see where I am ‘at’ then.

So, there you go. My list of ten(ish) things that help to keep my pain levels a bit more on track.

What are your ten things? Do any of the things on my list help you, too?

x