Travelling with a flare

[MusicalFurbaby]

Hi everyone, hope you are doing OK today—and if not, hope you are managing to survive somehow.

I recently went on a holiday (that’s why I’ve been absent for a little while), and I was sick while I was away. I am immunocompromised (as I’m sure most of us are) and I caught a few bugs, including gastro, a cold and a flu. I also experienced a flare-up in my pain, resulting in problems walking for about 2 weeks. It proved quite difficult to manage, especially as I was travelling with friends who were extremely active. They were very understanding, and kept saying things like, ‘We’ll go as slowly as you need to…’ but I still felt wracked with guilt, as I was constantly stopping for breaks and holding them up. At times, I just had to decline their invitations to go out, as I was already exhausted. I took all the drugs and tried to rest as much as possible, while still being active. I was endeavouring to strike a balance between not doing too much and not being immobilised by it either.

The thing that freaked me out was that previously, this kind of pain has completely disabled me. I mean, unable to stand for weeks at a time, let alone walk anywhere. I cried when the pain first hit, partly from sheer pain, but partly because I was panicking about becoming completely paralysed while on holiday. In the end, my efforts to strike a balance seemed to pay off, and each day the pain eased a little more.

Have you guys experienced flare-ups while on holidays? How do you cope with that, physically, emotionally and mentally, when you are away from the normal comforts of home, not to mention your usual doctors? I would be interested to hear tips you have picked up in your travels. 😁

[KnitSewPurl]

Sorry to hear you were unwell when you were away. The last travel I did was this year we ( my husband and I ) travelled out to Malaysia. Yes , it was very stressful for me . A) It was not a holiday journey as I was going to deal with family issues. B) to visit my brother . We always have a plan laid out . And I try to stick to my routine as much as possible. I don't cope with the heat very well even being born from there as I have lived most of my life abroad . Every time I have any sun contact I come out with a rash. So , I was very careful having to apply all the suncream before going out and wear a brim sunhat . Making sure I carried extra meds(painkillers )with me just incase I need it when I went out any where this was very important. Even here as well I do this . I carry extra strip of paracetamol and tramadol with me in my bag.

Sleeping is important. If you are already stressed and anxious and in pain, your body will need more sleep. We found ourselves sleeping really early and I found it very beneficial and helpful with those long hours of sleep it helped my body to have a proper rest.

For example recently, I have been having back and hip issues I have not been getting good night's sleep due to that not been able to sleep well kept getting up during the night because of the pain. With the prolonged nights of this my body became very tired during the day and wanting to sleep in the day and I was very exhausted and achy. So I did have a sleep slept for 4hours straight and still slept throughout the night . It just shows how tired our body is what our body needs .

So ,try listening to your body take it easy, have a bit of a routine it is not a bad thing sometimes it just helps to easy the anxiety and anxiousness to help you and your body settle into familiarity.

Take care

Hope you get feel better. Xx

[MusicalFurbaby in reply to KnitSewPurl]

Thanks KnitSewPurl, yes it was super hot during my travels as well! The heat definitely triggers flares for me, and I also applied sunscreen and wore a hat every day. I got tonnes of sleep, thankfully—except when I was coughing through the night after my cold. I agree with the routine too, it was helpful for me to get out and about in the end, rather than staying at home dwelling on my pain! Now that I am home, I feel like I truly made the most of my time there and did lots of very enjoyable things. Isn’t it funny how great a holiday can be, even in spite of illness and pain? Weird!

[MEGS53 in reply to MusicalFurbaby]

Very well done! You succeeded in having a wonderful holiday despite the difficulties.

Just remember not to ‘crash and burn’ 😬 and take rest when you need it.

Xxx

[MusicalFurbaby in reply to MEGS53]

Thanks Meg! Sleeping lots atm to try and get over the jet lag. And yes, I rested lots while on holiday. I know from past experience about the crash-and-burn, and I’m determined not to go there again!

[MEGS53 in reply to MusicalFurbaby]

💖💖💖

[KnitSewPurl in reply to MusicalFurbaby]

Well done , that you have managed to overcome this hurdle. most people are so afraid to even travel . The thought of travelling really stressed some people out and daunt them alot because of strange places & out of routine. Spacing your day is so important even though you don't feel like doing it that there is still another day. Don't feel that you have shortened your holiday put it this way you have achieved alot far more than you have expected.

[MusicalFurbaby in reply to KnitSewPurl]

Thanks, the fear of travel is real, especially when so many things can go wrong, things we cannot plan for or control! I try, as much as possible, to plan for the worst and then put it out of my head and enjoy the moment. Easier said than done—but I’m getting better at it. ☺️🌈

[AimeeA]

Most people when they go on holiday spend a lot more time outside in the sun than they usually do. The sun is horrible for lupus, even if you think it is enough wearing hats or sunscreen. It is often just too much.

I don't take vacations to beaches or places where I have to be outside in the sun a lot. I definitely don't go out when the sun is strongest at midday or lay out on the beach.

I made peace a long time ago that I just had to make some lifestyle changes to protect my health and prevent flares as much as possible.

So don't do what you know will cause problems... avoid the sun.. rest more and don't plan marathon days where you try to do too much in one day. Pace yourself. Plan times to just rest every day.

If you start to feel bad, listen to your body and slow down.

[MusicalFurbaby in reply to AimeeA]

Absolutely Aimee, I constantly gave the others feedback on what was too much. ‘That one activity will be enough for me today,’ ‘No, I won’t join you in going out again,’ ‘No.’ It’s tough, because I constantly feel like I’m letting people down. I just let them know I have a completely different pace to them. I don’t find the direct sun affects me too badly, but the heat definitely does, so often my pacing is about cooling off when I get too hot—or trying not to overheat in the first place, where possible!