Tuesday, 29 January 2019

When symptom levels creep up...

Over Christmas I caught one of the many bugs going round. Not one of the severe ones, but enough to knock me out for 3 or 4 days.

I kinda recovered, but I've been constantly feeling like I might be going down with the more severe lurgy that my PA is just getting over. Distinctly under the weather but in a way that is hard to define. Symptoms worse than I expect but not show-stopping. Which is often a sign I'm fighting an illness that hasn't shown itself yet, or my hormones are playing up.

The hormones came and went, and the symptoms stayed higher than expected.

So I'd been pootling along, almost waiting to be ill. Waiting for the reason my symptoms have been worse to show itself.

And as I sat editing the page of my latest book 'The Pocket Book of Pacing' which covers long term overdoing.....light dawned.

I've been 'long term overdoing'. Possibly for months. Pacing enough to avoid boom and bust, but not enough to allow myself to properly recharge. Constantly exceeding my energy levels by just a little bit, and as a result slowly getting worse.
Image description: Cover of"The Pocket Book of Pacing" and page 74 - draft, reading: "Beware of overdoing. If symptomss are increasing over time, it's time to revisit pacing basics. Doing a little bit too much each day can feed a downward spiral without an obvious crash. Where an underlying condition has got worse, better pacing will make life easier. Where an underlying condition hasn't got worse, having some recharge time and then pacing back into the 'I can cope with this' range allows your body to recover, and may mean you can slowly build back up without triggering the same level of symptoms. Staying in overdoing will almost always result in ever worsening symptoms.

I realised I needed a proper break - both in terms of brain power and of physical energy use. So I took the day 'off sick' even though I wasn't 'too ill to function'.

I spent it lying down on the sofa and watched a combination of children's movies and Jane Austin (which I can 'watch' with my eyes closed and be gently entertained). And making sure I didn't keep checking my phone or browsing the internet - because that still uses brain rather than giving it the rest it needs. I got up every hour for a stretch or a bit of exercise, or a drink or snack, but then returning to horizontal switch off rather than stressing my system by being upright.

I couldn't believe how much better I felt afterwards!

So I've revisited my pacing basics, and am now being strict with obeying my desk timer, taking proper brain breaks with no phone usage during them, and planning my day sensibly.

And I've also booked a short break soon to help with the recharge.

Slightly embarrassed at the irony of realising I've been overdoing it long term by reading my own draft book on the subject, but on the other hand, I know which book is going on my bedside table as soon as it's printed! I will definitely find it useful!

Onwards and upwards!

Friday, 28 December 2018

The power of being prepared

This year I caught the Christmas Cold.

Having Postural orthostatic Tachycardia Syndrome (PoTS) plus a cold means every time I cough, sneeze, blow my nose, or change position my heart rate goes a bit nuts and my autonomic system can't cope - causing me to be utterly drained as well as having a cold. At my worst I can't stand or hold a conversation - any attempt to do so just results in me crumpling under an avalanche of symptoms.

On the plus side I could tell from my change in symptoms the week before Christmas that I was going down with something. This meant I was able to prepare before it reached the 'can't stand, total flop' stage. I didn't sit down and plan this there and then - I just activated my 'I'm getting ill' routine (yes, I genuinely have a routine to follow when I realise I'm going down with something!) - and added a few festive extras.

Standard prep:

  • Stocked up on protein bars (no-prep food that can be eaten without leaving bed, but is more nutritious than chocolate and crisps.)
  • Got out my paracetamol, tissues, ginger, throat sweets, and other essentials.
  • Told my family: I'm ill. I will join in where I can, but won't do everything.
  • Got out my 'bad day' activities - children's films, jigsaw, cross stitch, sudoku, music, audiobooks, colouring - some by the sofa and some by my bed - ready for flollop in either location
  • Put other survival aids within reach of my bed - heat packs, extra pillows, fluffy socks etc
  • Used my wheelchair indoors - no challenging myself to walk until I can stand without my heart-rate instantly freaking out.
  • Bought foods I like when ill - like soup.
Christmas-y prep:
  • Stocked up on Christmas-y snacks - including chocolate and crisps (no-prep, bed-suitable Christmas fayre.)
  • Completed all essential tasks on the 22nd (before I reached flollop stage) - anything that didn't get done wasn't essential. 
  • Mum and sister had already arranged to come to mine for Christmas dinner - I let them know I wouldn't be able to help with food prep. They were fine with this, meaning Christmas dinner would happen even if I stayed in bed. (I love my Mum!)
  • Cancelled Christmas eve plans and most of the 23rd too. Allowing nearly 2 days of rest and recuperation to maximise my energy available for Christmas day. 
  • Christmas-y flowers and candles and twinkle lights in my bedroom. Set up so I could lie in bed and feel cosy and safe and Christmas-y - even if getting out of bed wasn't much of an option. More flowers in the lounge - because flowers are good.
  • Made sure the family Telegram group was ready for lots of Christmas sharing (I have siblings living in 5 different countries at the moment - some were visiting each other, so we were celebrating Christmas in 4 different countries!)
  • New Pyjamas
  • Booked boxing day off too, and planned a pyjama day.
Quite a few things didn't get done - various foods weren't bought, visits were cancelled, cards weren't sent, carols weren't sung etc etc.

I spent much of the 23rd, 24th and 26th flolloped on the sofa, but I was able to enjoy my Mum and sister's visit on Christmas Day before returning to hibernation in the afternoon instead of visiting my brother and his family. 

I'm still under the weather, but I'm definitely improving.

I think if I'd tried to have a standard Christmas I would have been miserable - a day of failures and disappointment and frustration at not being able to manage what I wanted to do combined with utter exhaustion. Being mentally and physically prepared for how my body reacts to a cold (and thanks to family for letting me have a no-pressure flop and Mum and sis for cooking me dinner!) I was able to have a quiet, cosy, special time where I looked after my body and did Christmas in my own way. 

And yes, I can honestly say I had a good Christmas.

(Note: This prep is what works for me. Everyone will have different things that work for them, but I do think that being prepared for being ill and having bad days can make coping with them a lot easier - whatever that prep means for you. )

Monday, 19 November 2018

My condition travels with me, but does it take the driving seat?

Finding your way to live well with a long term health condition is tough.

The condition is a part of every aspect of your life - always present. Something you must constantly take into account, and that might often stop you doing things you want to do. For me, this felt like it was taking over - that the condition was taking control and running (and ruining) my life.

Society often praises doing things despite having a condition - encouraging people to 'push through' and 'fight'. While there might be some conditions that 'push through' works for, in my case that only made me worse. And feel awful. As I got worse my condition dictated more and more of my life. Everything I wanted to do my condition stopped me - or made it horribly unpleasant. I felt a huge pressure to live as if I didn't have the conditions I do have - and it nearly broke me. Because I mistakenly thought living differently meant I'd given in.

Carla Spear, a friend with similar condition to me, said "It's like a bus - my conditions have to travel with me, but I am in the driving seat."

I loved the concept so much it became a poster.
Cartoon of a bus with a driver labelled 'choice', 3 passengers: skills, positives, & talents, and 'medical stuff on a trailer behind. Main text reads: My condition may travel with me, but I'm taking the driving seat. (c) Hannah Ensor 2013

To me it means:
- Not doing things just because someone else says I should.
- Not doing things just because I feel it's expected of me.
- When I want to do something, instead of trying to bulldoze my way through I (the driver) step back and ask myself: is there anything that will make this more doable? What do I want out of this? How do I get that without messing my symptoms up? I take control.
- I pace (Have a look at this blog for a bit more on pacing. here, and here)
- If I know something will cause loads of symptoms but I think it's worth it anyway, then I will do it - BUT - be prepared for the fall-out. Schedule in recovery time.

I find taking a planned couple of rest days is emotionally/mentally very different from unplanned crashes. An unplanned crash is full of 'I was supposed to be doing x, I ought to be doing y, I can't do z' and often feeling to exhausted to work out what I need to do to help myself. Whereas a planned recovery is full of 'I did it, paying for it now, but so worth it', and it carries with it the recognition that my rest is valid, important and empowering. The planned recharge means I've already planned some things to do to help me recover - ranging from gentle stretching and cross stitch to heat packs and takeaway meals. And it's DECIDED. By me. Not by my condition. By me. My condition made it necessary, but I chose to do it on my terms.

I used to switch between trying to insist my conditions weren't travelling with me and me allowing them to take the wheel. Now I am in the driving seat and they are travelling with me, but not in control. I might need to adjust my driving style to take my conditions into account, but it's still me making the decisions.

It doesn't mean I can do everything. Sometimes I decide the symptoms/rsk isn't worth it - but that is my decision. My life is definitely shaped by my conditions, but it is no longer dictated by them - instead I take my conditions into account when I make my decisions. As a result I am happier and healthier than ever.

Saturday, 10 November 2018

When you discover a product that makes you cry...

On Thursday we were at the Kidz to Adultz North exhibition in Manchester. We met lots of lovely people and got some great feedback - but that's not why I'm blogging today.

As an exhibitor I don't get chance to look around much, but one thing I always do is make a note of the nearest stands with beds on, make friends with the staff, and then periodically be a model for them whenever I need a horizontal pacing break.

GrandeThis time the stand opposite was AAT. One of their specialities is positioning aids. They have these blue cushion things that you sit/lie/lean on, have a good wiggle to make it comfortable for you, and then all the air is pumped out and it solidifies creating the perfect resting place for your tired body/limbs.

Anyways, arriving early, as all good exhibitors do, I got chatting to them and asked if I could try their nearly-full sized mattress thing (a slightly smaller version of the grande: https://www.aatgb.com/grande.html ). They agreed with enthusiasm, and cheerfully went through the customising-it-for-me process.

Several years ago I tried a cushion by them, which I borrowed for the event, and which gave heavenly support to a very grumpy and unstable wrist. But this was a whole different level. I lay there waiting for the usual build up of pain from joints being forced out of line by my body weight, and pressure on painful areas.....It didn't happen. Instead I felt myself relaxing - properly relaxing - and not a single joint slipping out of line!

All too soon the event opened and I had to get out of bed and go to work.

My pelvis and sacro-illiac joints have been having a grumpy patch. As I worked at my stand my lower back muscles kept getting tenser and more achy, and nothing I could do eased it for long. The kind of pain where rocking and whimpering feels like a genuinely good idea.

Then I had a lull in customers. I nipped across the corridor and snuck back into my custom cocoon, with it's additional pressure relieving blanket-y thing, shut my eyes, and teared up. The relief was almost instant and overwhelming. It's hard to explain what it's like to suddenly able to relax without any joints slipping out of line to someone who's joints naturally behave! To relax without needing to consciously keep enough tension that things don't get injured! To relax and feel completely and utterly supported while also feeling like you are floating in softness! I could wiggle or stretch out when I wanted to - then relax back into supported perfection.

For the rest of the day, every time my table was quiet I slipped back to my cocoon. It became my number one pacing tool. The only problem was that as I got more tired, it took more and more will power to get out of it! I confess I even ignored a few customers......but on the other hand, by missing 2 customers I was able to recharge enough to speak to the next 20 properly! So I don't feel too guilty about that.

I even did a few sales pitches for them and got to demonstrate the pressure relieving effect: They put a special pressure sensing sheet over the cocoon so that when I lay on it you could see the pressure level in different colours on the screen. I wish I'd taken a photo of the screen! pressure levels were consistently at level 1 and 2 over my whole body - on a scale of 1 to 10 - with 10 being the reading under my butt when I sat up.

(Note: because it's cocoon-y, it might not work for everyone as getting out of the cocoon needs a bit of strength or assistance. But for me this was at a manageable level.)

So next week will have two high priorities:
1. find out if I can borrow one and test it out overnight - a 10 minute nap and a full nights sleep are different - and I really need a solution to at least some of my sleep issues!
2. Work out how to afford it. As an assistive device that might transform my sleep, it's actually quite reasonable - if I remember correctly it was between £1000 and £1500. But that's still enough to need some serious planning!

(And no, I'm not being paid to write this, nor do I have any connection to AAT except wanting their products! I just thought that finding something so lovely and needed and effective that it made me cry was an important thing to share in case someone else finds the same!)

Tuesday, 30 October 2018

Brain Fog Blips #1: Avoid the lobsters.

Brain fog is an ever-present companion for many people with disabilities, and most people have moments of brain fog when they are really tired, albeit often to a lesser degree.

I'm someone who gets a LOT of brain fog. To the point that I routinely reply to more complex enquiries with 'Sorry, I'm too foggy at the moment, I will get back to you in a few days.' And when having conversations with the uninitiated, I often explain in advance that sometimes the fog means I can't find the right words, so if I'm not making sense, don't worry, but do check what I mean!

I used to find it frustrating, but as I've got more used to it, I've come to accept that it's just one of my many quirks, and I can't get rid of it so I might as well enjoy it.

Recently I've had a few brain fog incidents which still make me chuckle a few weeks later so I thought I'd share them with you, as I'm sure many of you will relate to them and be as amused as I was by these #BrainFogBlips.

I was going to do just one post, but then I realised I have far too many moments for one post, so instead I'll share the first one now, and do new #BrainFogBlip images whenever the inspiration and fog combine suitably.

So here goes: #BrainFogBlip 1:

I was driving a car with a trailer while helping out with some woodland management. All was fine and fabulous. I'm getting really good at reversing with a trailer (well, really good by my not-so-good standards, anyway, and trees can cope with the odd scratch). However, attempting to reverse near the workshop where there were lots of random obstacles was quite a challenge.

"Just go straight, you'll be fine" my nephew says, looking at the angle of the trailer, but not the random timbers, rocks, and containers lining the narrow track.

"I know - I just need to avoid the lobsters!"

Image description: #BrainFogBlip. Stickman reversing a trailer in woodland, saying "I just need to avoid the lobsters....?...obstacles!" while a second stickman stands near, laughing, and imagining a big lobster on the track.

Pause. Reassess phrase. Err.....I think that should have been 'Obstacles' - I mean, lobsters is like nearly an anagram of the right word!

While the nephew howled with laughter before commenting "Yes, that's definitely Hannah!"

The image of giant lobsters obstructing the quiet woodland path still makes me chuckle.

Thursday, 18 October 2018

My 2 favourite hypermobility/PoTS hacks:

There are loads of tips and tricks for living with disability that only come with lived experience - sometimes our own experience, and sometimes others who've lived with similar conditions or symptoms and discovered things that work for them - which turn out to work for us too.

Anyways, this isn't a long blog. It's just two that I currently love. One newly discovered, and one newly remembered.

Picture: Hannah wearing a white T-shirt with small flowers on,
and hot pink arm warmers. And a smile.
As someone who loves soft warmth but is also heat intolerant due to PoTS, it makes the cooler weather somewhat tricky to cope with. Until: Arm warmers. They mean I can keep my arms snug without my torso overheating. And if it's a bit more chilly, a light scarf plus arm warmers is heaven. And I'd recommend looking on Etsy for arm warmers in your size - I found lots of nice ones on there last autumn - which have been brought back into use thanks to a fellow POTSy facebooker reminding me how awesome they are.

I have proper chunky knitted ones, and soft, thinner jersey ones. And all of them are long- otherwise my elbows get chilly. I usually wear black ones, I want a pair of blue ones, but hot pink have their place too!

2. Floor-based ironing.

Image: ironing board lying on the floor, with a shirt and an iron on,
and the knee and foot of someone sitting on the floor, using it.
Clearly this won't work for everyone, but it was a real light bulb moment for me. I have tried ironing standing up. Burns. Sitting down means board at wrong height. More burns. I literally hadn't done any for months. (except before my brothers wedding when I burnt my arm). Anyway, I was on holiday and having a wobbly legs day but wanted to wear a shirt that had got crinkled. And the ironing board was on the floor - so I plugged the iron in and found myself in a half crouch half kneel at the still folded ironing board - and it really worked! My body likes sitting on the floor and I could adjust my position easily and securely without needing much balance, and with minimal POTS aggravation!

So there you have it: Wearing arm warmers and crouching on the floor to do the ironing are my current favourite hacks.

Friday, 12 October 2018

New style keyring cards!

Today we launch the first few key ring cards in a new style!

They are exactly the same size and construction as the stripey cards we've been producing for years, but instead of bright and stripey, they are pastel and plain.

Why? Because some of our followers have been telling us that they love our work, but find the colours on the cards too bright.

So we mulled it over for more than a year, got inspiration a few months ago, got feedback on social media, finalised it a week ago....

....And they arrived today!

As stripey-border stock of cards gets low-ish we will be reprinting in plain-border. With over 150 card designs, it is likely to be months before we have the full range in the plain-border style. We will stock both border styles alongside each other. So when you chose a card that is available in plain, you will be asked to select stripey or plain.

We decided to use 4 colours on the new cards.
  • Lilac: Cards explaining a specific conditions.
  • Pale blue: Cards giving general information about symptoms or needs.
  • Pale turquoise: Cards that can be summarised as 'here and now, I am OK.'
  • Pale orange: Cards that can be summarised as 'here and now, I am not OK.'
With a few exceptions: The emergency cards will keep their bright red background, and the traffic lights cards will keep their strong red/orange/green. This is because, for these cards colour is an essential element of the communication they facilitate.

Some cards don't easily fit into a category, in which case we will do our best to allocate them a sensible colour.

We currently have 12 designs in this new style, and expect to print new ones every month or so.

You can find all the cards available so far in this new style here.

While our range of cards in this new style is very limited, we've added a new page to our website where we'll put all the cards available in this style in one place (as well as being able to select either stripey or plain border on the main product page).