Saturday, 14 March 2020

Breaking my self management rules

One of my condition management rules is 'no wheels inside the house'.

This is because if I don't exercise I will deteriorate. I have to practice my walking.

So in the long term it's better for me to walk.

However, this is a long term view, for when my symptoms are average.

At the end of last week I had a slight cold. Nothing dramatic. However, a slight cold kicks my autonomic dysfunction into a whole new level - on standing the speed at which my coordination and cognitive function becomes significantly impaired is impressive - I have seconds of full coherence if I'm lucky. (For those not familiar with PoTS, it causes reduced blood flow to the brain because the system is accidentally sending/leaving the blood elsewhere.)

photo from wheelchair users perspective of their lap next to some crockery, tissues, scarf, charger on a cushion..So it was a rough day. The kind where curling up in bed was the only realistic option. As I lay there wondering how I was going to reach the loo and then stand for long enough to wash my hands I realised: today was a day for breaking my 'no wheels' rule.

It was bliss. Not only could I use the bathroom, including to properly wash my hands and brush my teeth, but I could also tidy the pile of bits and bobs that accumulate by the sofa (especially on sofa days!). Placing them on my lap and taking them where they belonged without needing to stand even once.

But the most beautiful moment of all was when I saw rain was falling in sunshine in the front garden. The wheels meant I could scoot to the back of the house - way out of reach on foot - and spend 5 minutes watching a double rainbow slowly growing brighter in the sky.

Bright rainbow in grey sky, with a paler second rainbow outside it.

On Monday I felt a bit better, so I went back to my 'no wheels' rule.

In hindsight, looking at my dinner, that that decision may have been a little premature.....

curry splattered on the floor with a broken white and red dinner plate.

Saturday, 14 December 2019

Fatigue and Christmas: Managing Expectations

[This is written based on what helps me, with my symptom levels. It isn't magic one-size-fits-all solution, but hopefully it will be helpful for someone.]

Christmas with limited energy get's complicated very quickly! You know that doing the whole 'standard' routine is going to be too much, but also don't want to let anyone down. You feel the weight of expectations both from yourself and from others.

For me, the most important tool has been communicating. And by communicating I don't just mean 'telling people what you can and can't do'. To work it needs to be a much more two-way thing.

So here, in no particular order are some things which help me:

  • Remember: Things which are blindingly obvious to you can be totally incomprehensible to someone else - so be prepared to explain 'the basics' right down to what you mean by 'bad day' or 'can't cope'. And only say you are fine if you really are! My stock phrases to replace the 'I'm fine' lie are "Given how busy I've been, as expected." or "All things considered, not too bad" 
  • Pre-agreed visual cues (like coloured wristbands, flashcards or hand signals) to let someone know your status without it needing to be talked about also makes a big difference. No-one (including me!) want's to spend Christmas discussing my symptoms, so having a non verbal way of communicating the key info that might otherwise be invisible to them means we don't have to talk about it, but they still get to understand!
Image description: stickman labelled 'looks like' with santa hat, looking sad, holding a saucepan. 2nd stickman labelled 'feels like' with santa hat, zombie eyes, pain zaps, and a dizzy head.
  • Discuss your limitations in advance. This way people have the chance to process what you say when they themselves aren't overwhelmed with Christmas planning! 
  • Do not attempt to discuss your adapted Christmas needs if the convo is already heated. Save it for when everyone is relaxed - perhaps over a Christmas-y snack.
  • Instead of saying "I can't do that",  say "If I do that, then this.....". This helps people understand you haven't given up, increases the chances that they will understand, and also opens the door for finding sensible solutions. For example: "If I try to spend all of Christmas afternoon with everyone, I will get so exhausted I'll have a meltdown or shutdown. But if I spend half an hour with everyone, then take a break to recharge, and then come back again, I'll be able to join in a lot more and I think it will make things better for everyone."
  • Involve family in the decision process. For example: "I know we always do a, b and c. But this year I really won't cope with them all. However, I reckon I can do two out of the 3, and have a nap during the the other one. Which 2 do you think we should prioritise?"
  • If there is a part of the day that someone really wants you there for, talk about what would be needed to make that possible. 
  • Plan adaptations during an event that will maximise your ability to join in. For me, being able to lie down means I can spend a lot longer 'joining in'. Planning the room with a 'Horizontal Hannah' space makes a world of difference.
  • Consider alternatives and be prepared to compromise. For example, if I think I will only cope with around 30 minutes at a time with guests, I ask others for input on which 30 mins they would prefer me there for - as guests arrive? in the middle? as they leave? That way people who will be affected by my need to limit involvement are a part of planning it.
  • Think of ways you CAN be involved remotely if relevant: videocalling. Asking for, sending, and commenting on photos. Being positive and interested about aspects of Christmas you won't be able to be involved in. Perhaps the family go on a walk, and there's no way you will be able to join them. But could you have a treat up your sleeve for when they return? Or could you suggest a photo challenge for them on their walk, which you can then have fun judging when they get back?
  • Could other people join in with something you do to help you recharge? (listening to audio books while doing a jigsaw is one of our family Christmas traditions).
  • Pace. And let people know you will be pacing. This means not 'keeping going until you crash out completely' but doing short periods of challenging stuff, then withdrawing to recharge, then joining in again. When people see me leave, and then join back in again later without fuss, they are usually much more accepting and calm about my needing to leave and needing to do things differently - the fear that you are 'giving up' and 'letting disability define you' can reduce as they realise that by being sensible with what you do, you actually can be involved more.
  • Remember that it's not just about Christmas day, but also about before and after. Let family know about pre-charging and recharging time you will need. If you decide you are going to push your limits majorly on one day, make sure family know to expect hibernation the next day!
  • Have a plan for if symptoms are worse than expected and you have to step back from more than you hoped. Being prepared for a 'what if I can hardly get out of bed' day means that it can still be a nice Christmas (festive snacks and drinks within reach, fairy lights, clean bedding and PJs, TV programs and audiobooks). I try and make it so it can be as nice as possible without extra input from anyone else, even if I'm totally flolloped. This means no-one else is under pressure on my behalf. If no-one can give extra input, I will have a good Christmas from bed, but if they can give extra input (like pop round with a plate of dinner and a hug) then it will be an even better Christmas.
  • Make your bedroom Christmassy, so even if you have to spend a lot of time in there, it still feels nice. 
  • Ensure your outfit allows you to relax and self manage. My favourite is tunic or wrap-around dress that's a bit smart but also comfortable, with leggings (so I can sprawl in whatever position I need to), fluffy socks, and a lightweight scarf that can give the comforting feeling of 'snuggle' without making me overheat.
  • And above all: don't allow yourself to put pressure on yourself. It's OK to step back, to recharge, to manage your time so that you can enjoy day. 

Sorry this turned out rather longer than I planned, but maybe that increases the chance of there being something in the list that is useful, and I hope you all manage to find your way to have a happy Christmas.

Thursday, 7 November 2019

Nesting: fatigue survival skills

Nesting is a really important coping mechanism for me.

While pacing carefully to minimise 'Boom and Bust' is absolutely vital, there are times when total flop needs to happen. This is still pacing - but it's pacing the fallout of something unavoidable or one off events. (see more about pacing in our 'The Pocket Book of Pacing')

 My reasons for nesting include:
- When hormones attack with a vengeance
- When I get a 'normal people illness' - coughs and colds seriously mess my body up.
- When I've done something that I categorise as 'totally pushing my boundaries, but worth it for good reason as a one off'

Any of the above mean I instigate 'nesting'. Prepared flop time.

In addition to lots of pillows and blankets and softness, my nest has within reach:
- no-prep snacks. (crisps, protein bars, fruit, veg)
- Several bottles of water
- Flask of tea
- a favourite book
- a well loved jigsaw and jigsaw board
- phone and charger
- laptop and charger (but only for watching TV/movies - not for brain stuff!)
- mini heat blanket
- textured ball (can be used either to massage or as sensory input)
- medications
- baby-wipes
- cross stitch

This means that I can match what I do to my energy/ability levels without needing to go anywhere.

And ensure there are appropriate 'easy to eat' mircowave meals ready for when I have recharged to the point of proper food being an option.

When I know a flop is probably approaching (eg hormones or a majorly busy event) I can set the nest up in advance. Everything (except the tea) carefully stocked in my room.

In addition I mentally clear my 'To Do' list. Nothing is 'have to'. As I recharge during a nesting day, I try and keep whatever I do to one level below what I feel I can cope with for most of the time. For example If I feel I might cope with a movie, I'll watch a nature doc or familiar movie to reduce the concentration required. If I think I might be ready to read a good book, I might wait a bit longer before doing so, and make sure its a familiar one. But I will also put the book down or switch off the screen the moment it becomes an effort. So that while I might increase what I do over the day as I recharge, I don't use up all my recharging on the activities I do.

Monday, 28 October 2019

Pacing: Ensuring recharge time is actually recharging

When I'm fatigued, or have been pushing my limits, I need to recharge. This doesn't just mean doing something that isn't physically demanding. It also means making sure my brain gets to recharge too.

Watching TV can be a typical 'down time' activity, but if I watch something that is exciting or too involved, I don't recharge - my brain doesn't get the break it needs. This even applies to things like watching the rugby! Although my body might get a rest, it's not a full recharge because my stress response keeps kicking in, and the autonomic system might still get quite a workout as the fortunes of our team ebb and flow throughout the game.

And another habit I had got into is browsing social media or playing a game on my phone while watching TV during 'recharge time'. And actually it means I don't relax, and that my brain stays busy. It doesn't stop me recharging at all, but it does make recharging vastly less effective - so it takes a lot longer.

In good weather, I find that lying watching the clouds, or trees, or enjoying a view can be excellent recharging. In winter the reality is it's often screen related. But I've re-discovered my favourite 'recharge time' programs: Nature documentaries. Especially with David Attenborough - but there are several others with voices I like too. Voices that are calm, and gentle.

At 11am this morning I realised that I was having to tell myself to concentrate. This is a 'pacing flag' for me - it means I shouldn't be telling myself to concentrate, I should be allowing my body and brain to recharge. So that is what I did.

No checking my phone for half an hour while I watched 'Wild China' on BBC iplayer. Enjoying the gentle beauty of it with my eyes open or shut as I felt like it, snuggled up, plenty of cushions, head on a level with my heart to help with PoTS symptoms.

[Image description: the photographers legs curled up under a blanket, in a living room, with a laptop visible showing green foilage.
And sure enough, 40 minutes later I returned to work, refreshed and ready to 'brain'.

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!)