Friday, 18 November 2016

Why do I find unexpected change difficult?

Dealing with unexpected changes is a challenge most people would associate with autistic spectrum disorders (I love the illustration about it in this article: http://www.huffingtonpost.com/carrie-contey-phd/the-tendril-theory_b_7984160.html ) or perhaps with anxiety. But did you know that many people with conditions which cause fatigue can also struggle with new or unexpected situations?

For me it is because fatigue and brain fog can mean I can't figure out what I need to do, how I can make it work for me, and if I get it wrong, then a) I might not actually manage to do it, and b) my symptoms can escalate horribly.

My ability to cope with unexpected changes varies hugely with fatigue levels and brain fog. Some days even a 'would you like to pop round for dinner' is something I can't get my head around - other times it's an instant yes, because my fatigue is lower so my coping ability is much higher

These are some of the issues an unexpected change of plan can raise:

- I haven't planned my day to save energy for the new thing. I don't know whether I will be able to get through it without majorly upsetting my symptoms, nor have I planned the necessary recovery time afterwards. And I don't know if my schedule will allow for taking tomorrow off.

- Is it within a safe driving distance for me or do I need to arrange a lift? If I need a lift, who is driving and which of those cars has a boot my wheels can fit in? And what happens if I can't cope and need to leave early?

- I don't know if the venue will be accessible. Will the lovely evening stroll have styles or narrow gates? Will the restaurant have step free access and a loo? Will I be able to lie down if I need to?

- I don't know if I have the right kit with me (for example I have different levels of compression wear, and need the full on custom made entire outfit for being upright for long periods with minimal symptoms. So I might need to change my outfit...but do I have the energy and joint stability to change compression wear? - Do I even have the chance to go home and change it?  Do I have enough cooling vest inserts ready? And do I have the right wheelchair/mobility aids with me?)

- I don't know who else is going. I have a handful of friends and family who have become experts: seen me when I'm really bad and don't flap. They know what to do (for example, how to help me realign a wrist, or when to suggest I lie down). And a slightly larger group who mostly get it, but might get a bit freaked out at some things. If a group doesn't have any experts I will need to come up with back-up plans. (Keyring cards help for this, but don't entirely solve the problem) - this particular issue needs quite a lot of brain power and time before an event to sort out.

I have learnt to take several breaths before reacting. It's not the end of the world even if in that split second it feels like it.

The vast majority of these questions have sensible answers which will make things do-able, but it takes time and brainpower for me to work out the answers. If an outing or event is suggested at short notice. ready to happen in an hour, then I may well not be able to go. Not because the trip is a physical impossibility, but because I don't have the time to sort out the things that would make it possible.

So if you are with me when a spontaneous happening is suggested, and I go quiet or am very unenthusiastic, it doesn't mean I don't want to go, it usually means that I do want to go, but need to time to process things first.

So please be patient, and help me find the answers if needed, and give me as much advance warning as possible so I can make sure I am prepared and can make the most of the event.

Tuesday, 15 November 2016

Finding an accessible home

My recent output of new products has been a bit less than usual.

There is a reason for this: I am moving home! I now have my new home, but it won't be ready for me to move in for another few months as it needs a lot of work done to it.

So over the next few months you can expect a few blogs about the process.

Here are a few notes from my recent experience of house hunting:

1. Wheelchair accessible homes at sensible prices don't exist in my area.

2. Logic says most bungalows will work. Um...no. Half the bungalow's where I live either have corridors with tight corners that even my skinny wheelchair can't get through, or...get this...they have INTERNAL STEPS!
Seriously, why go to the trouble of creating a bungalow, only to put a step into the kitchen? Or a step into the bathroom? Just....why? (Ok, I admit, I'm highly biased in favour of level access.)
And that's without factoring in that most of the smaller bungalows have been converted and expanded into the roof - creating 'unusable space'.

3. Before arranging a viewing, ask the internal step question, and check the floorplans to see if you've already viewed one with that layout and found it inaccessible.

4. I started off convinced I wanted a minimum hassle house. Somewhere that was all nice so all I needed to do was move in. All the nicely presented place still needed work! Replacing front doors with low threshold doors, putting in ramps, replacing carpets with laminate/vinyl, widening doorways and replacing the bathroom. So after about 6 months I changed my priorities and decided that buying somewhere that needed a lot of work was more affordable - and more likely to be find-able - because then I wouldn't be paying for things I'd have to replace to make it accessible.

5. When viewing, try out the mobility options you will use in real life: crutches, wheelchairs etc. It's no good getting somewhere which you can walk through, but not with crutches, or not with a wheelchair - when those aids will be needed some days. The local estate agents got very good at lifting my wheelchair over doorsteps - I would get myself through the door, and they'd bring my chair. This way I could make sure my wheels would be able to access all the important areas.

So after over a year of looking, I found somewhere that was both within my budget and could be made accessible. It's a 60's bungalow which doesn't appear to have any works done on it since the 80's - the amount of work that will need to be done over the next few months is phenomenal, but the end result will be worth it. It's going to be tough balancing all the house related work and decisions with condition management and stickman business, but thanks to a builder friend who is taking on the bulk of the work and coordinating with all the contractors I think it will work out.

But perhaps the most significant thing I've learnt so far is just how difficult it is to find a home that could be made suitable fairly easily. My heart really does go out to those with disabilities who have to hunt for rented accommodation which is suitable without adaptation - because rented places will only be adapted if the landlord decides to. 'Uphill task' is, I suspect, a considerable understatement.

Monday, 7 November 2016

The need to recharge.

I've had a rough few days. Fatigue and pain levels have been much higher than usual, and doing anything involving concentration is hideously difficult. I've had to cut right back on how much I've been doing. I'm not quite sure why. Perhaps I'm fighting off a cold or infection, or maybe I've been overdoing it for a while without noticing - or perhaps it's something I haven't thought of yet.

Either way, it makes me feel guilty.

Like I should be doing more, and I'm just being lazy for not.

But no.

If I can't function, then it's OK to rest. It's OK to reduce my activity levels to a level I can cope with, and just do little tasks (or little sections of a task) and then return to resting before symptoms overwhelm me.

So today I am reminding myself: It is OK to need to recharge. It is necessary. And by gently pacing myself and recharging I will return to my normal much sooner than if I try to push through it and exhaust myself even further.

Today I choose to invest in my future.

I choose to recharge.