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!)