Planning a Weekend Away

A couple of weeks ago, I went to see my niece who was born premature. It was a bit touch and go for a while and she was in hospital 2 hours away. Most people on finding out this information, would have jumped in the car at the next available time possible, even if it meant driving there and back in one day. I physically can’t do that – doing that would have meant I’d have ended up in hospital too. So we planned to go see her a month after she was born. Which I was obviously massively frustrated about. Having a chronic illness and travelling takes considerable planning as it is, but having an illness like mine which isn’t very stable at the moment is more complicated and there are certain things I have to do or check out first when planning a trip. At the moment, I mostly stay put at home because I’m not well enough to be able to make trips. However, my niece was more sick than I was and in the NICU, so this was an exception! Here’s how I plan for a trip:

  • Find out where the nearest hospital is, and then where the nearest trauma centre is. If there’s not one within 20 minutes ish of where I’m going, I don’t go. Most people go on trip advisor and check out local attractions and restaurants before deciding where to stay. I go on the NHS website and make sure the nearest hospital has an endocrine department! 
  • Packing medications/’equipment’. I tend to take 1.5 times the amount of medications I’ll need away with me, just in case. If I go away for more than a couple of nights, I also take things like my BP machine, thermometer, blood glucose machine and sharps box so that if I feel weird I can do checks myself and adjust meds like I would at home rather than having to guess or go straight to hospital. Basically if you’re ever ill when you’re away with me I can probably give you a similar service to an out of hours GP (disclaimer: Joking). This is what I took with me meds wise when I went away for 2 weeks. That was a while ago, I take more daily meds now! 

  • Documents. I have a letter explaining why I need needles and saline for security points, and also saying that people can’t confiscate or withhold my medication. But I also carry factsheets (translated into other languages if need be) about my condition and what drugs/tests/treatment need to be done in hospital. Some of my drugs are controlled so I take prescriptions as evidence they’re mine when I go abroad. I don’t have magazines in my hand luggage, I have lots of (prescription) drugs! 
  • Travel. Car is the best option because we can pull over and have rests whenever we want. I get a lot of pain from travelling and it tires me out even though I’m not driving, so we don’t tend to go far. I find places like airports and train stations hard because of the amount of walking/standing involved. Flying isn’t an option right now since it makes me very ill currently. Especially if there are delays- the last time that happened I had to ask the cabin crew to sort the temperature fast to avoid them delaying the flight further by sending me to the ER. 
  • Accessibility. I use this word to encompass everything I check out, not just ‘is there a lift because I have issues with stairs’. So things like is there parking nearby? Do the places we’re going to have toilets? Air con or do I need layers? Places to get water? Places/benches to sit down? Is there a lot of walking involved or do I need my wheelchair? Is there somewhere in the day I can have a nap? Are there places to eat which fit in with my normal diet? 
  • Accommodation. I can’t stay by myself overnight, so I had to visit my niece when my husband or my mum was available to be in the same hotel overnight, just in case. But on other occasions, like visiting friends or family, I suss out things like is there a bed/sofa bed (I can’t sleep on the floor) or make sure that the room I’m sleeping in isn’t too hot, dusty or damp. It’s not because I’m fussy, it’s because those things make me sick!
  • Meal times. I have ‘windows’ of time where I need to eat in to help manage my conditions. So brunches, late lunches/dinners can cause me problems. I also need to know what foods roughly I’ll be eating in advance so I can balance out my carbs for the day. I carry a lot of snacks with me, so, again, I’ve got you covered if you suddenly get hangry. 😉
  • Nap times. I nap most days as it is, but I definitely can’t go away and do more than usual without scheduling in some lying down quietly/nap time every day. It sounds boring, but it’s that or I go to hospital. Helpfully, I seem to have a similar nap schedule to lots of my friends’ babies! 
  • Emergency injection buddies. I usually go away with my husband but if I do go away or out for the day without him, there’s always one person who I’ve trained in how to use my injection and what to say to paramedics dispatch if need be. 
  • Activities before/after. If I’m going away, I won’t do much/anything the week before or the week after. Except for medical appointments. Basically I’ll spend most of the time in my pjs lying down and doing the absolute minimum. Sounds like most people’s idea of heaven, but I’d much rather be a functioning human being and have a social life that doesn’t just involve Netflix and Facebook! 😉 
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