Planning a holiday or a day out should be exciting but for many people with variable illnesses or disabilities it can be pretty daunting. To be honest, planning anything can be pretty daunting. I’ve lost count of the number of events I’ve called off at the last-minute. For any new visitors to my blog, I have Ehlers Danlos Syndrome. It’s complicated but basically means I can *literally* fall apart at any moment.
Pain and fatigue can very quickly suck the joy out of even the most fun occasion so here is my quick guide to successful event planning with a variable disability.
Communication – This is super important in general but especially important when travelling or trying something new. Whoever you’re travelling with really needs to know about your condition so they can help you if things go wrong. I don’t really go far without one of my close people. I know it sounds a little negative but for me, when things go wrong they go really wrong so I always have someone on hand even if they aren’t actually with me all the time. If you’re not with ‘your people’ then make some new people. This is especially important if when things go wrong you lose the ability to ask for help. If that’s the case (as it often is for me) you might find non-verbal communication is your only option. Trusting new people with your scary medical needs can be a little daunting but surely it’s better that someone is prepared incase things go bad? In the event of epic disasters I also have an ICE emergency app on my phone with instructions and contact details, most of the time it never gets used but it does help put my mind at ease.
Pace yourself – Pacing is a skill that takes many years to fine tune, it’s also super easy to forget about when your off adventuring. Unfortunately having a list of exciting things to do doesn’t actually cure chronic fatigue so pushing through to see everything in one trip might not be the smartest plan. If I’m off on holiday I try to plan in rest activities. At least half of every day should be a low energy activity. I also listen to my body, sometimes you need a whole day of low energy activity. When visiting the isle of Skye a few years ago I once spent an entire day outside our holiday cottage birdwatching in a sleeping bag. I didn’t plan to spend the day like that but I woke up feeling awful so I set up camp settled in, I actually had a wonderful day. I saw lots of things I wouldn’t have seen if I’d gone out and I felt loads better and ready for an adventure the next day.
A simple way to pace holidays is the traffic light system. Code your activities by colour, Red activities are things that use up most of your energy and will be hard going, they often require long rest breaks afterwards. Amber activities are quite tiring but totally manageable with regular rest breaks. Green activities are safe, fun and don’t use up much energy at all.
When planning a days worth of activities try to stick mainly to green activities, if you’re planning a Red adventure then make sure you clear the rest of the day and maybe the next day to recover. Pacing yourself might sound like a chore but in reality it’s the most efficient way to work. It reduces your chances of a mid-holiday crash and makes sure you get as many activities done as possible without you ending up in bed for a week afterwards!
Travel itself is often a Red activity so if you’re driving a long way or flying then make sure you schedule in a decent rest on arrival.
Use all the tools available – Make use of public benches, rest often even if you don’t desperately need to sit down. If someone offers to help with your bags then let them. If you arrive at a country park and they have a free-to-hire off-road scooter it is designed to be used. I might be 25 and pretty healthy looking but I have no problem with using a mobility scooter if the chance arrises, why? because it improves my quality of life. I can either walk 200 yards from the visitors centre then limp back or I can whizz off at 6 mph and see all 3 miles of off-road trails.. which sounds better?
I try to be prepared, I take my wheelchair with a fold up walking stick and wear my ankle braces, it gives me 3 options to move around. I might not need my wheelchair all day but I can save some energy and make the day last a bit longer or I can put my bags on my chair and use it like a trolley to avoid back pain and arm injury. If I know I’ll be sat still all day I also take my wheelchair because it’s the most comfortable seat for me. Remember, with all mobility aids having them doesn’t mean you have to use them all the time.
Another tool at your disposal is assisted travel support. Many airports, train stations and even some hotels offer additional support for people with disabilities. If it’s offered, take it. I always book assistance when flying but I don’t always use it. Support can range from helping wheel you around to just sign-posting you in the right direction to check in. They are there to help you so don’t be afraid to speak out and ask for what you need. If fatigue or anxiety are issues for you I fully recommend booking assistance, airport check-in can take a really long time but when travelling with assistance you often get fast-tracked so the staff aren’t hanging around with you in queues.
Be prepared – If you’re travelling abroad there are often restrictions on what medications you can take with you. There are also restrictions on what can go in hand luggage and ever more restrictions on what you can put in the hold. These restrictions change frequently and vary across different airlines. Your best bet is to phone the airline in advance and ask. Generally speaking it’s a good idea to have all prescription medications in labelled boxes with copies of your prescription sheets. If you’re travelling with liquid medications then you might have to get smaller amounts than normal. Pharmacies stock smaller bottles so it’s worth asking for a prescription to be two small bottles rather than one large one. It also makes travelling more convenient. I often travel wearing a TENS machine which can cause alarm at airports so I always get a doctor’s note listing all of my medications, my additional extras like splints and my TENS. Power chairs and power-assist options on wheelchairs often need to have the batteries removed when flying too, the instruction manual should have all the info needed.
Be flexible – Sometimes there is nothing you can do to prepare for bad days, they just happen. If you’ve planned in rest days you should also have some wiggle room for adventure plans. If you can’t do your scheduled adventure on the day you planned, maybe you can swap plans with the following day. Chances are you’ll enjoy it more if you’re feeling better. Flexibility can also apply to activities with friends and partners, if you’ve planned to go out with friends but cannot face it then maybe your friends can stay in with you. Change a red activity to an Amber or Green one.
Finally, Enjoy yourself – you are supposed to be having fun so try not to let all the planning take the joy out of the experience. Being spontaneous can be difficult with disabilities but it can also be really rewarding and lead to some fabulous experiences.
I hope this has been helpful to prospective adventurers. As always, questions and comments are always welcome.