Saturday, 19 April 2014

10 Tips for trips away with chronic illness & update

10 Tips for trips away with chronic illness

Trips away may help recharge healthy people's batteries but can be exhausting for those with chronic illness! Having travelled around a bit recently (see update below), it seemed appropriate to share a few tips I thought of for trips away with a chronic illness:

1) Be realistic about what you can manage. Pushing your limits too hard early on can mean the end of the trip away is far less enjoyable. Don't save the activity you're most wanting to do until the end of the trip incase you're feeling a lot more unwell by then and less able to enjoy it! Try to pace yourself.

2) Ensure those you are going away with are aware of- and understand- your illness and the limitations it imposes.

3) Make sure you take/pack any medications, mobility equipment etc you may need. Take sufficient 'as needed' medications with you for if you need to be on the maximum dose the whole time you're away; you'll almost certainly bring some home, but you won't have the worry of running out.

4) Ensure your accommodation is suitable for your needs when planning the trip (not more stairs than you can manage, etc). Get a room in a suitable location (where it's likely to be quietest/is closest to where you'll be wanting to get to).

5) If certain activities are part of your usual routine, pack whatever is necessary for you to have the same routine while away. For example, a book if you read before bed, or headphones and music player if you listen to music.

6) Pack ear plugs if it might be noisy overnight or you are sharing a room with someone who might disturb you.

7) Pack energy-saving things like dry shampoo if it's what you'd usually use to allow you to get out when you don't feel well enough to properly wash your hair.

8) If travelling by car, a pillow and blanket might help you get more comfortable. Maybe some slippers/warm socks too so you can take your shoes off and put your feet up.

9) Don't feel that you have to keep up with everyone else. If they're doing something you don't particularly fancy, or you're feeling particularly unwell, stay behind and rest.

10) Make sure everything that needs to be done in advance is done (by you or someone else). Do you need to book assistance for train travel? Do you need to check whether somewhere you're wanting to visit is wheelchair accessible? Do you need to ring the owner of the property you are staying in to arrange how to collect keys? Do you need to plan the route you're going to take? Do you need to check what time you can arrive at your accommodation? Making sure such things are sorted in advance can help things go smoothly.

Update

Sorry I've neglected my blog (,Instagram, messages and twitter) a bit recently! I have had practically no Internet for the last week and since my last blog update I've been uncharacteristically busy! I hope all my CFS/spoonie friends are doing ok!! I will try to catch up with everything soon..

I visited my university city for a couple of days to see an event with a friend and went out for a meal with some of my Uni friends for one of their birthdays. I had a fantastic time. It was lovely to see people and the event was amazing. I then visited my grandparents with my mum and dog which was nice- I saw a school friend and various family members as well so it was good to catch up with everyone and it was a nice few days with some little trips out. I then went away with my parents and dog which was enjoyable- good to get away and see somewhere different. We didn't go far but it was nice and peaceful and somewhere different to explore a bit.

I'm now home and it's good to have WiFi again and lovely to be back in my own bed!

It's been a really nice few weeks, but my illness has predictably interfered at times.

Just before going away I had a problem with a change in medication (from gabapentin (Neurontin) to pregabalin (Lyrica)) for chronic facial pain/general nerve pain. I took 2 doses and ended up asleep for an entire day feeling incredibly unwell, out-of-it and my vision was off. I felt dreadful. I didn't have time to see whether the effects would wear off because of impending travel, so I quickly swapped back to my previous medication and the disaster was averted. I do still need to re-attempt the change because I need to know whether the medication I've been on for ages is contributing to my abdominal pain. The new medication did seem to help a lot with my pain in general, but I couldn't judge the effect on my abdominal pain from only 24 hours spent almost entirely asleep.. I will probably try again at this dosage and if the side effects don't reduce, will see a doctor and get lower dose capsules prescribed and see whether they help.

This probably sounds trivial, but I've also had a mouth ulcer on my tongue which was painful. I get them occasionally, but this one seemed particularly evil and made speaking and eating awkward. It's healed now thankfully- phew!

I've also had a cold, which has developed into a bit of a chest infection (which often happens because I'm asthmatic). I'm still coughing and still a little congested. I felt absolutely awful for a few days, but am slowly coming through the other side. Colds are pretty scary with CFS because there's the possibility they'll cause a flare, or worse, a relapse, but thankfully this one doesn't seem to have set me back much (fingers crossed..!).

Then there's the obvious CFS. It's been ok-ish. Up and down with some really bad days, but generally I've been doing alright. I've been able to leave the house (in the car/on poppy- my mobility scooter) most days, which has been great. I'm exhausted now, but at least I've had a good time. I have undoubtedly pushed things a bit too hard for too long while away so payback awaits, but hey, got to have a bit of a life sometimes..! I was starting to really suffer the last few days, but am home now, so can focus on recuperation.

My brother is at home with us for the long weekend, so I might keep pushing a little bit longer to do a few things with him, but we'll see. I'm in a lot of pain today, so it depends whether that eases.

So overall things have been going ok. I've been able to get out and about quite a lot which has been great, but I'm suffering for it a bit now.