Monday, 3 June 2019

"Make time for your wellness...." ?

Recently a health care professional tweeted a version of the saying

"Make time for your well-ness or you will have to make time for your ill-ness"

I've seen a lot of hurt and upset reactions to this comment - interpreting it as saying "if you are unwell or chronically ill, or disabled, it is because you don't make time to be well - your illness is your fault."

I can understand that view.

Perhaps at one time I would have shared that view.

But today I see it differently.

I am disabled by several conditions - and I can't make them disappear.

However, one thing I have learned over the past 10 years is that if I don't look after myself, my symptoms get horribly worse. If I force myself to do more than I can cope with I end up injured, exhausted, in more pain, and having caused more damage (and if I really screw up, in hospital. Other things I can't control can land me in hospital too, but making no time for my wellness will - and that's something I can control). If I spend too long without exercising I get weaker, causing more injuries, fatigue, pain, and damage. In the early days after diagnosis I didn't make time for my wellness - I didn't know how to. I didn't know how to pace, I didn't know how to exercise in a way that worked for my body, I didn't know that a short nap instead of a forced continue was an option.

Now I do know - at least in part.

I know I have to pace and exercise, and I understand my body well enough to be able to do so.

And pacing IS making time for my well-ness. Making that a priority above expectations of others, or 'what I want', and 'what I planned'. Making choices that look after the 'long term' me.

Personally I still find this phrase slightly uncomfortable. Not because it is wrong, but because it reminds me that I've not been as good as I should with my physiotherapy and diet choices recently. I can't cure myself, but I can make choices that give my body the best chance of coping well with my life. It never feels nice to be reminded that I could (or even should) have been making better choices.

To me, the phrase isn't about being guilty for having the disabilities I have, instead it's about respecting my body and looking after it as best as I can - and I find that empowering.

I need to get back in to a better physio routine, make better use of my cooling vest now summer is here, and put some serious thought into my summer food choices (food can really affect my symptoms). I need to make time for my wellness. And I will. Not because it will cure me, but because it will help me be as well as I can be - and in the long term it will mean I am able to do more than if I didn't make that time.

So now I'm off to do some core exercises in between some short naps, before returning to my 'proper work'. I suppose I could say I'm taking a self-care lunch break.

I'm off to make time for my well-ness. Because that is better than making time for the symptoms that will worsen if I don't.

Page from 'The Pocket Book of Pacing' from It says: "Swapping task or technique before your body forces you to stop can reduce recovery time. OVer a longer period it may even increase how long you can do a task without triggering symptoms!" with a picture of 5 progressively more exhausted stickmen.

Thursday, 9 May 2019

Pacing when there's too much to do: Conscious Decisions

I started to write a blog about pacing when there's too much to do based on my stupidly busy last few months (new website, becoming a limited company, working with the HMSA, family stuff, managing my health etc. etc.) but it was too long, so instead I'm going to try a series of shorter blogs about separate aspects of pacing when there's too much to do, when optimal condition management simply isn't possible and I just need to get through a set period of time, after which demands on my time will decrease again.

(Note: The 'coping with too much on' combination of strategies is different to a 'coping with everyday life' although lots of the principles will apply to both. Also note, I'm still getting back on track after the 'too busy' time, so I'm not working as much as I would normally, and probably have a few brain fog errors in this blog. I wondered whether I should simply not write until I was OK, but decided it's OK to write stuff that isn't perfect. That is simply 'the best I can do for now'.)

Today's topic is 'Conscious Decisions'.

I still find it fascinating how easily I get to a point where I'm just reacting to one thing after another, feeling like I have to do all this stuff, and I'm drowning, and yet how quickly a few conscious decisions can change it.

Over the past 10 years I've learned that as soon as I feel the desperate STOP THE WORLD I NEED TO GET OFF! rising up, I need to review tasks, priorities and decisions. It's become a hardwired process. ARGH I CAN'T = stop right now. Reassess. then decide how to proceed.

Example 1: 
- I try and release new products every 2 months. I have done for years. I haven't released anything new since The Pocket Book of Pacing (how ironic!). I'm overdue. I'm failing. I must do new products..... - guilt and stress sapping precious energy. I have a queue of people asking for new products. I can't let them down!

By consciously looking at this task, I could decide: No new products until May. What if I loose customers? I'm letting people down. No actually, I'm planning my workload and ensuring my customers get the best. Instantly other tasks become less overwhelming because I know there's one thing I don't need to worry about yet.

Example 2:
- I've been invited to visit a friend for dinner, and I still have a million things to do, and I don't know how to fit it all in, and I don't have the energy - but I want to go, and I haven't seen anyone for ages, and EVERYTHING IS TOO MUCH ARGHHHH

By stopping and consciously asking myself 2 questions it was sorted: Would you like to visit them?   Yes, I want to go, and I think I need a break from work too. What genuinely needs to happen? - well, I don't need to look presentable to visit. I can flop on her sofa (she's a great friend!).Only one task was essential for that day, and it was doable before the visit. I also decided to only go for an hour instead of actually for dinner - longer would have been too much energy. But because I'd decided to go, and I'd also decided that other tasks could wait, I enjoyed my visit without worrying or feeling guilty. And because I'd decided only an hour (and told my friend that) it made leaving early also not a big guilt factor.

Example 3:
to get the website launched on time I will need to work all weekend. I'm already exhausted. I can't think straight, but I have to get it done! I can't earn any money until it's up! I can't let my customers down! I CAN'T COPE! STOP THE WORLD I NEED TO GET OFF!

Stop. Re-assess. Is this a 'society expects' based 'have to'. Or is it a genuine 'have to'? Will I be homeless if I don't earn for another week. No. I have enough money for essentials. (yes, I know how lucky I am). Will I honestly loose all my customers? No. If I carry on, I'll be messing up my health and recovery may take months.

I decided to delay the website launch by a week (and it just happened that my developer also suddenly needed time off too - so I got his request just as I sat down to write mine). But not only that, I realised just how run down I was and took the whole weekend off. Joyous, unrepentant, and free from all 'ought'. I lay in bed and watched brainless TV. I napped. I snacked. I stretched. I relaxed. I didn't push myself to do anything. Sitting up only happened when I genuinely felt I had the energy to do so. And because I had decided that this was a recharge weekend I didn't feel like the mountain was looming. Instead I knew (and kept reminding myself) that the break would allow me to climb the mountain more effectively next week. And I was right.

(Note: I didn't ignore the fears. I thought them through. I looked at the 'what if's' and decided how significant the risks were, so I could weigh up what action to take)

Example 4: 
This is going to totally exhaust me, but I have to do it. I have no choice.

Stop: Is there a choice? Actually yes, there was a choice, but it was so important to me that my decision was to do it anyway. Ok, so I've decided to do it. What other decisions do I need to make to make it as do-able as possible, and to manage the after-effects? - I booked the following day as a splat day, made sure meals were prepared in advance, looked through my To Do list, and scheduled in all other key tasks for the week to ensure I knew I could get the most important things done that week despite taking the time off for this.

It was amazing how many things I could delay/change from my original schedule by making conscious decisions.
In an ideal world, yes, the accounting system would have been fully operational from day one. But actually, it has been absolutely fine to use it enough to be certain the system works but leave various admin tasks to catch up on later. It's worked out fine.
My website launched a week late, and nothing bad happened.
Other times I pushed myself to the limit and then stayed in bed to recover - and that was OK too.

The important thing was that nothing was 'have to' - everything was 'I choose'.

And that made so much difference.

[Yes, I am fully aware there is a LOT more to pacing in a busy patch than just decisions, hopefully I'll cover some other issues in the next few weeks]

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: ). 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.