Naidex is possibly one of the UK’s biggest disability exhibitions. This is my first year, but I’m hoping I’ll be prepared! Planning a day out when having a chronic health conditions or disability can feel like planning military manoeuvres! Preparing for Naidex (being three days long) feels even harder.
The last time I went to a large exhibition was IMATS (International make up artistry trade show) back in 2012. I was doing my make up artistry training and had only just started to have symptoms being problematic. I had only just started walking with a stick and didn’t really know my limits. But one day of struggling to walk around the exhibition and attending talks led to 3 weeks in bed. My mobility has since drastically reduced, but I have been given enough time to practice pacing. I hope this time I’ve got all bases covered!
When planning for big days out or events like this, I forget how it affects my mental health conditions as well as my physical. Crowded cramped spaces are not normally good environments for me. Lots of noise can make brain fog worse. I need to know where my exits are and where I can go if I have flashbacks or panic attacks.
So when I started thinking about planning for Naidex, I did have thoughts of ‘is this really a good idea?’ and ‘surely this is a nightmare situation?’. Negative self talk is usually something I try to block out, but this time it made me think about what I really needed to make the most of the event.
Preparation is the key
I am not a naturally organised person! I’m dyspraxic. So it takes a lot of forward planning to make sure that allowances are made for my dyspraxic thinking. In that vein, I’ve taken a little bit of a backwards approach to my planning. Trying to work out exactly what I needed and who is supporting me when off the bat seemed overwhelming. Instead my assistant and I made lists of all the talks I want to attend and all the stands I want to look at. Its worth making good use of the exhibition guides if you have one beforehand. If not, theres printable guides on the Naidex website. We’ve also highlighted on a map where all the stands I want to look at are. It sound a bit OTT even to me, but anything to reserve battery power and energy levels.
Anger Spoons is my energy
The first issue that was my energy levels. To keep my energy levels up I need to be careful of two
aspects – what I’m putting in (food and water), and how I’m using my energy (making sure I’m pacing myself). I’m really bad at remembering to eat (and have allergies which can make eating out difficult). It makes sense to bring a selection of healthy snacks and set times to snack. Making sure I’m well hydrated is also not something I’m good at. I’m hoping to take a camelback water bladder with me and have regular reminders to drink from my assistant.
Pacing is something I find very difficult. On a day-to-day basis, I’ve got spoon theory to a fine art. But, when I’m spending the day out or I have a busy week coming up I find it more difficult. In the run up I’m making sure that I’m taking it easy for a good few days beforehand (spending the majority of the day in bed beforehand if I feel I need to). I’m also not taking on any extra commitments than absolutely necessary. I’ve decided I need to take regular breaks, but what form these will be in will have to be flexible. Just being still and not engaging for 10 minutes does count!
Energy isn’t all about physical output. Having lots of conversations and keeping up with what’s going on can be mentally draining too. Don’t discount the small things. Getting out of the car seems such a small task to many but it can be physically draining too. Preparing everything the night before helps, as I can’t predict how I will feel in the mornings (often my worst time of day). I am not intending on visiting every stall or every talk. I’ve tried to make a fairly streamlined list of what I’m doing. I may miss out on fairly large sections of the stalls but my energy is a finite resource and I want to enjoy what I can get out of Naidex afterwards as well, rather than 2 weeks in bed.
The second is crowds. I left London after 6 years for this exact reason. Theres no way I would be able to do this event alone without PTSD and anxiety, but I had to think very hard about how I’m going to manage. Firstly, I’ve had to brief my assistant very clearly on what to look out for to help me prevent a panic attack in the first place. Small things, like just checking in with me, letting me know if I’m breathing fast, and taking me somewhere quiet if I need it. I’ve also put together my panic pack, which I’ll feature in another blog coming soon, but its essentially a make up bag with bits and bobs to calm me down and ground me. Theres also a few extras thrown in in case of emergency.
Pain in the…
Thirdly, my pain levels and comfort. At home I use a combination of heat, ice, pain relieving gels, and medication as well as having a range of chairs, cushions, and other props to keep me comfortable. I tend to wear the comfiest things I have when at home, but that neither practical nor always socially acceptable outside the confines of my house. I tend to have adhesive heat pads such as these, with me when I’m out. Instant ice packs like these are a handy thing for so many situations, from injuries to headaches.
Usually I would wear jeans but normally cut jeans are really uncomfortable if I’m spending all day seated in the wheelchair or on the scooter. I am still looking out for fashionable well cut wheelchair jeans. Please let me know if you come across any that are available in the UK at reasonable prices! So instead I will likely be the next best alternative – leggings! They aren’t hot, but they are versatile and comfortable. I really like modal leggings as I find they allow your skin to breathe and are soft enough for the most painful of days. The cold really gets to me and can’t always control my temperature so light non-bulky layers are always a good option. I will be wearing my Chronic Style Disorder T-shirt, so if you see me please come and say Hi!
I also seem to have a problem with batteries. Scooter/phone/camera are all being brought with back up batteries and chargers. I’m also making sure my scooter has got good tyres on, decent cushion and anything else I might need to make me comfortable. That said Naidex is a great opportunity to pimp up your scooter or chair!
How have you been preparing?