Sunday, 13 October 2019

The little things that are big things

Last week I bought a watch.

A standard, cheap, supermarket watch.

But to me it's more than just a watch.

10 years ago, both my PoTS and my hypermobility symptoms were out of control, and a year or so using crutches, and then becoming a wheelchair user had messed up my wrists even more.

I couldn't wear a watch. The weight of it could make my wrist bones slip out enough to HURT, even the lightest watches caused problems. I also had to take it off with frustrating regularity so I could brace my wrist. I even tried wearing a watch around my wheelchair frame for a while. In the end I stopped wearing watches. For years.

Last week I bought a watch.

A standard, cheap, supermarket watch.

And I can wear it. All day.

And not only does it tell me the time, it also tells me "You have made progress. Well done."

The years of being careful about the angle of my wrist when I lift things, the physio - starting with tiny little controlled movements and building from there, the accepting help when I can tell my wrists have done enough for one day. It helped. It worked.

Now every time I check my watch, I am reminded of my progress.

Tuesday, 13 August 2019

Unexpected hotel accessibility woes

There are some accessibility issues I am always prepared for in hotels - check in desks above head height, restaurants accessed via steps, inaccessible showers and baths, gyms and spas up stairs with no lifts etc etc. I've met them all in hotels advertised as 'accessible'. Before I book somewhere new I therefore do a lot of research - asking lots of specific questions about each area, making sure I'll be able to get everywhere I want to and need to.

So when I find somewhere that works for me, and not only gives me access to my room (including bathroom) but also the restaurant, bar. gym and swimming pool - it goes on my 'safe list' and I'm likely to try and use that hotel whenever I'm in the area.

Last week I went back to a hotel that was on my 'safe list'. I've been going there for years. It takes so much stress out of travelling when I know I can get everywhere I want to go!

I arrived, gathered my bags from the car, wheeled downhill across the carpark, getting my speed just right so I could swoosh through the electric doors without stopping....

And into a newly refurbished lobby.

As I wheeled towards reception I looked around thinking "Not bad colours. I like the look of those  'office-y' space tables with sockets - I can work from there tomorrow. I wonder which chair will be most comfARGH..."

eye-poppingly surprised stickman in a wheelchair being tipped forward because the front wheel has hit a 'Level Access Lip' joining one flooring type to another positioned perfectly to stop a wheelchair.

Momentum + suddenly stop the small front wheels = tip forwards (enough momentum = splat)

Fortunately the momentum was only enough to cause shake rather than splat.

Investigate cause: smooth solid floor has been replaced around the reception desk with thick carpet. The carpet is slightly raised - possibly 1.5 cm (half an inch) above solid floor level. The step between the two is bridged by an angled rubber joint - kinda like the big black rubber cable covers. Only thicker. And at the perfect angle to stop my castors dead.

Deep breath. Get heart rate back under control. Check for alternative route. There isn't one. Reverse slightly and try again at slow speed...Nope.

Okay. Only way to check in is to pop a wheelie. Normally not an issue - but I with overnight bag, laptop, and handbag on my lap that's a lot more tricky!

Made it!

Checked in, wheeled off to my room (going down the lip was easier than going up). Sorted. At least I know to avoid the check in desk for the rest of my stay - if I need anything I'm phoning!

Breakfast the next morning:

Ooh look! slightly different layout - but nicely workable. All on the nice smooth flooring too. Choose table. Wheel confidently to the hot breakfast buffARGH!


And deep breath.

One area of smooth, solid, perfect-for-wheels flooring to another equally delightfully accessible flooring AND YOU STICK A STOPPER RIGHT IN THE MIDDLE?

Check for alternative routes. None. Unless I stick to cereal. Not a chance. I'm here for a 'Full English'. Reverse, small wheelie, reach buffet. Fill plate. Edge cautiously towards the stopper. Being on the slightly raised section means going down should be easier than up. Slightly tricky, but achieved with all food still on the plate.

Put plate on table. Now for a cuppa.

Locate tea station. Scan access routes. oookaaaay. There's an ominous black stripe across all routes, but no visible change of floor level. Approach with caution. IT'S A STOPPER! ANOTHER STOPPER! WHY?? IS THIS FOR REAL???

Reverse. Wheelie. Make much needed cuppa. Turn around. Ah. Gotta make it out of here. I've got the technique for wheeling on smooth floors carrying a cuppa. Look at the stopper. Look at my cuppa. Every route back to my breakfast has stoppers. Stuff it. I'm not abandoning my cuppa. Do my gentle push/pass cuppa to other hand/gentle push on other wheel/ cuppa back to first hand/ Extra push with slight wheelie while holding cuppa in other hand at arms length so it doesn't spill on me.

Made it. With three quarters of a cuppa to spare. Breakfast was nice. I didn't make a second cuppa.

That evening I went to the barARGH!



Deep breath. Resigned eyebrow raise. Reverse. Wheelie.

Looks like this hotel is well and truly off my 'Safe' list until the lobby has been un-re-furbished - or at least returned to it's previous level of 'stopper'-free bliss.

And that, my friends, is why going new places is not something I do to relax, and why I rarely get excited about places being 'done up'!

(Note: I had a long conversation with the bookings manager - fingers crossed changes will be made.)

Wednesday, 7 August 2019

PoTS and the power of Fidget and Horizontal Switch Off

I have PoTS (Postural tachycardia syndrome)

Laminated card reading: I have Postural orthostatic Tachycardia Syndrome. My autonomic system is faulty. My blood pressure and heart rate don't adjust well to postural changes. I can't stand for long, I fidget. I can faint or become semi-conscious. I may appear drunk because of it. don't worry, it is not life threatening but may mean I suddenly need to sit or lie down.

For me, the cause seems to be floppy veins (from a connective tissue disorder) causing blood pooling = less blood getting back up to the brain when I'm upright (light headed, brain fog, loss of coordination, stroke like symptoms etc)  = autonomic system trying to compensate and failing (fast heart rate, breathlessness, feeling even worse).

Here are 2 coping techniques which are currently really helping me:

Early moving:

When I use it:
For mild symptoms, and before symptoms develop: to prolong my 'useful upright' period. When symptoms are mild, getting up and walking about may also help but only while symptoms are mild and there aren't lots of 'layers' of stress on the system (for example walking might help when I've been sat at my desk in silence for a while in a cool environment, but walking around will make it worse if I'm in a warm lecture hall and have been talking lots.)
Fidgeting to keep blood moving. Mostly concentrating on legs, feet and core.  Sitting on a wobble cushion or 'chair dancing' also fall into this category. As does putting knee pads on and kneeling at a desk instead of sitting, and then fidgeting while I kneel. The movement has to be controlled and involve actively tensing and relaxing and moving muscles - so flopping a limb from one position to another doesn't help me (and may worsen my symptoms).
Being able to function better for longer while upright, and being able to do things that aggravate my symptoms for longer before my symptoms stop me - for example if I'm talking lots (a real PoTS aggravate-er for me) 'early moving' makes me able to talk for much longer than I could if I sat still.

Interestingly during a lecture for podiatrists I started the talk without my shoes on (so I could demonstrate my hypermobility) and fidgeted massively with my feet. Half way through I put my boots on. Afterwards one of the listeners commented that he could see an increase in my PoTS symptoms which coincided with putting my boots on and keeping my feet much stiller! Since then removing my shoes before a lecture to maximise fidget capcity has become standard prep, as has not wearing shoes while sitting at my desk.
A photographer caught some of my fidgeting while lecturing - there wasn't a single photo that had feet visible and relaxed! I cropped a few to illustrate the point.

Horizontal Pauses:

When I use them:
When symptoms aren't responding to the fidget, or have become too severe for the fidget to help.
Lie down so that feet are higher than my heart, and my head is level with or below my heart. I do not need to sleep, but I do need to relax and allow my brain to switch off. Having my head slightly raised makes it less effective. Using my brain also makes it less effective. I think it may be that if my brain stays busy, my autonomic system doesn't reset so well (but that's just a personal theory, not something I have scientific proof of.) So watching a David Attenborough nature documentary is much more 'recharging' than doing a sudoku.
It is important to note that as these are short horizontal pauses, they do not carry the same risk of de-conditioning that is associated with long periods of lying down.

This helps me recharge after pushing my limits. A few short Horizontal Pauses can give me a boost to help me through the day, although it doesn't undo the exhaustion of having to cope with the level of symptoms that made it necessary. Horizontal Pauses don't stop me needing recovery days after busy days, but they do allow me to cope better with the busy days, and seem to speed up recovery.
I also use them as part of my daily routine - a proper horizontal pause early afternoon makes a world of difference to how well I can function for the rest of the day.

(Note: it is important to note that these are things that help me. This doesn't mean they will help everyone. I have shared them in-case they help someone. Always check with your health care professional before making drastic changes to condition management!)

Wednesday, 10 July 2019

Fatigue, achievements, and "I shouldn't feel like this, I only...."

The other day I was hanging out with another disabled young woman, doing some gardening together.

It was lovely, being outdoors and chatting while also getting stuff done.

Her walking is better than mine, but my ability to pull up weeds was better than hers. After a while we settled into the routine that I pulled up the weeds, and she took them to the bonfire pile.

She commented "I'm so tired - I shouldn't be this tired, I've only walked from here to there and back!"

That walk might have been a short stroll for some, but it was near impossible for me.

We talked about how important it was not to belittle our achievements just because it wasn't hard for someone else. We might be slower and get exhausted, but that doesn't make us less.

When it was time to go, I got back into my wheelchair (I usually garden by crawling) and sat a minute to catch my breath...

"I shouldn't be this tired, when all I've done is that small patch of weeding!"


Silly moments of comparing can creep up so easily and steal our sense of achievement and joy.

The reality was:

  • We both did stuff we found challenging. 
  • Together we achieved far more than we could have on our own.
  • Together we got things done that otherwise wouldn't have got done.

We now have a pact. Neither of us are allowed to use phrases like "I shouldn't feel like this" or "But all I did was...." when talking about our symptoms. We have the bodies we have, and if it was challenging for us, we are going to celebrate that we did it!

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!