Tuesday, 21 November 2017

When fatigue steals your ability to manage your fatigue.

Image description: 1. Stickman realises fatigue (cloud) is creeping up. 2. stickman trying to thing up a sensible management plan, while fatigue cloud reaches into stickman's ideas. 3. Fatigue steals ability to plan and leaves fog behind. 4. Feel worse, can't work out how to improve things. 5. Crash.
Isn't it ironic. When you most need to think clearly you are least able to.

My classic one is when I overheat. Because of my POTS my fatigue builds rapidly when I'm too warm, as does brain fog. The brain fog means I don't realise I'm too hot, nor that I should do something about it. I wondering why I feel worse and worse until I crumple into a flollopy mess, where I stay. Unable to work out how to improve things. Until someone asks me why I'm wearing a jumper (called a "sweater" in American) or tells me to put my cooling vest on (or something similar). Or I have a flash of inspiration that makes it through the fog. I've lost entire days to hideous fatigue and brain fog just because I was wearing a jumper . Pre-diagnosis, and in the first few years post diagnosis I probably flolloped for whole weeks because of this.

Now I have pre-arranged recovery plans.

Image description: 1. Stickman realises fatigue (cloud) is creeping up. 2. stickman trying to thing up a sensible management plan, while fatigue cloud reaches into stickman's ideas. 3. Fatigue steals ability to plan and leaves fog behind. 4. Follow pre -arranged recovery plan. 5. Escape the crash. (Note: Unforeseen or unavoidable circumstances can mean the crash still happens, but the recovery plan will help make it shorter.

When fog starts to build more than expected, take jumper/blanket off, pop outside/somewhere cold to see if it helps.
Move. See if getting the blood moving helps.
Rehydrate.
Snack.

And if these don't work I switch to 'recovery plan' (some people also call it a 'Flare-up plan'
Lie down. Properly. So head is level with or below the level of my heart (again, this is a POTS management tool - getting the blood and oxygen back to the brain).
And switch to 'light duties' only, no big concentration, favourite music/DVD, bits of colouring/jigsaws, frequent short stretching & gentle movement, no vigorous exercise, minimal food prep, Eat food my body finds easy to digest (carrots, tuna, eggs, crisps, well cooked greens, soup), make sure joints are supported and not flopped to end of range.

This routine helps me get back on track. I might have tasks I have to complete - but then I return to this routine until the fatigue lifts back to normal levels. Recovery is a lot quicker when I follow this plan. Even quicker than it does if I simply curl up on the sofa and don't move all day (periods of sofa time are fine, but my body does better with lots of small bits of gentle movement). Because it's kinda 'established' I don't have to work it out. True, I still need to realise I feel awful, but having the plan literally written down and stuck somewhere obvious (like on the fridge) can be a real help. As can letting people around you know the plan and asking them to remind you if needed. Even people who are 'around' on line can help - I've lost count of the number of times I've been text-chatting, and the person I've been chatting to has noticed my typing accuracy  and coherence decreasing, and have asked "Are you wearing a jumper?" :D If my clarity of thought has been stolen by fatigue, using someone else's seems a really good idea!

(the specifics are what works for me - everyone will have different specifics, but having an emergency plan is something I'd strongly recommend to anyone with a fatigue-causing condition)
  
But what I love doing (and need to do more) is the 'cunning plan'.

Image description: 1.Know extra fatigue will try creeping up. 2. Make a cunning plan in advance. 3. Fatigue can't steal your plan. 4. Follow plan. 5. Escape the crash. - note: unforeseen or unavoidable circumstances can steal your cunning plan. In which case, use the parts of the cunning plan that you can, and switch to the recovery plan as soon as possible.
This is when I know that the tasks for the day will increase fatigue, so I actively plan my day (often using the pacing magnets), complete with phone alarms and desk alarms for: swapping activity (see 'swap don't stop' blog post), meals, rest periods, snacks etc.

And writing down my To Do list in sections of easy/OK/challenging - and mixing it all up throughout the day so I don't overload with challenging and drain my precious energy too quickly - shifting things to tomorrow if I realise it's not realistic to do it today.

I get so much more done on these 'cunning plan' days - and I feel so much better at the end. Fatigue won't stop the sensible decisions because I've already done the main thinking AND the cunning plan also reduces the level of fatigue that I get. Win-win!

Of course, unavoidable things happen. Illness, flooded kitchens, social events. If we know in advance it's worth putting a cunning plan into place to minimise the fatigue (I always do cunning plans for big social events, with things like where and when I can sneak out for a lie down, I take snacks, stick to easy-digest food, take my cooling vest and wear it if other people take their jumpers off.)

And the unexpected stuff that totally steals the plan and the brain? Well, don't beat yourself up. It happens to us all - the recovery plan is there to help pick up the pieces without needing lots of brain.

Wednesday, 1 November 2017

Buses, buggies and wheelchairs

Yesterday I travelled to London by train, then across London by bus. This 3 buses there, and 3 buses back.

That's quite a lot of bus!

The journey out was uneventful.

The journey back was another story.

At the bus stop there was mum 1 with a buggy waiting next to me, for the same bus. We chatted a bit.

The first bus wasn't very full, and the wheels space was empty.

As she got on, she asked the driver to put the ramp down for me.

"No, sorry. We can't have a buggy and a wheelchair on the same bus."

"But we can both fit safely!"

"Nothing I can do. It's company policy."

Mum 1 started to get off the bus so I could get on, willing to stand in the cold for longer for my sake - but given that she had a young child, and I had ages before my train was due, I decided I'd wait for the next one.

I waited.

The next bus to arrive already had a buggy on. Fortunately the driver didn't bat an eyelid, let down the ramp, the mum shifted the buggy so we shared the space quite happily.

Phew!

I reached the next change-over point without problem.

The next bus arrived. I'd been communicating with mum 2 with a buggy through gestures (I'm not sure whether her English wasn't good, or she was hearing impaired, but either way: gestures worked) we were both awaiting the 29 bus, which was, at last, approaching, and fingers crossed we could both get on.

Mum 3 with a buggy was already on the bus. The ramp came down and as I went up, the driver checked which stop I wanted to get off. Being me, I couldn't remember! It was half an hour away and I'd planned to check my phone to remind myself once I was on the bus. I settled into my space without problem - the buggy was moved to let me in.

As we drove off I realised that I'd inadvertently left mum 2 at the stop. I felt bad. Disappointed for her, and hoping that she and her child wouldn't get too cold. I didn't hear anyone ask mum 3 if she could fold her buggy, nor asking mum 2 that same question.

3 minutes later at another stop, the driver popped back to where I was sat and checked which stop I was headed for. I'd worked it out by this time, so I could answer.

All was going well.

Until 10 minutes later he pops his head around my corner again "I'm really sorry. Our schedule has been changed and we have to terminate at Mornington Crescent -a few stops before you want to get off. Will you be OK from there?"

I checked the route of my next bus - it had a stop 20m from our terminating stop, so it was actually fine. But it was really nice - and reassuring - that he took the time to check I would be OK rather than just kicking me off. Looking back though I feel a bit strange. He treated me so well - as a disabled person I was clearly high priority - which is a big change from the second-rate treatment we often get (access to posh venues through the bin stores, being a speaker at an event where they forget to make the stage accessible, being treated as if asking for access is a nuisance etc), but at the same time we'd left mum 2 behind, and the same effort hadn't gone into finding a solution for her.

I was left thinking:
1. What really is the policy/procedure for carrying buggies and wheelchairs on London buses? Can they take more than one at once? The variation between drivers means the policy isn't clearly understood by them all. And if it really does only allows one buggy OR one wheelchair, it's a bit daft (I say this as a retired Environmental Health Officer, qualified to enforce health and safety in various places, as well as a wheelchair user.)
2. Being left at a bus stop because a small child is in your space sucks.
3. Leaving a small child out in the cold because you are in the space they need also sucks.

Yes, driver training might help, but I think perhaps what will help most is a pragmatic and practical policy based on 'how can we safely fit the maximum number of wheelchairs AND buggies onto our buses'. Not 'which takes priority', but 'how can we take everyone.'

Except at rush hour when the bus is fit to burst and people have to be left behind -wheels or not. Then, perhaps, the answer is more buses at that time of day.