Rheumatoid Arthritis on holiday

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Ok, bad headline. Rheumatoid Arthritis, the way that I have it, is NEVER on holiday. Maybe it’s too lazy sometimes to make me really hurt badly…but it’s always there digging the boot in somewhere.

Going on holiday when you have Rheumatoid Arthritis is a serious business. First and foremost, many kinds of holidays are out of the question.

Camping for starters. Sleeping on a thin camp bed would equal not being able to move at all the next day. No microwave, no heat packs…if there are no hot showers, then it’s just pure torture.

Holiday’s aren’t supposed to be torture.

So it’s hotels or cabins. The cabins have to have the aforementioned microwave, so you’re talking 3.5 star at least. That would be about $150 – $200 a night minimum.

There is no cheap holiday when you are chronically ill.

Then you need your heated throw and maybe you need a fridge for your meds. There is no ‘roughing it’ with RA…not because you’re a sook, or you don’t like to (I used to enjoy it) but because it will cripple you if you try. The bed needs to be halfway decent or you won’t move the next day.  You will not enjoy it. It will NOT be a holiday.

There is no holiday from moderate to severe Rheumatoid Arthritis.

There are certain things you need access to. As I said, heat packs, showers, and microwaves are essential. Maybe even a fridge because some medications need to be refrigerated. Mine don’t, and anywhere that has a microwave will have a fridge, anyway. But it’s worth mentioning.

Along with the nsaids, dmards and corticosteroids, I also need to take a range of painkillers along for the ride.

I’m fairly skilled at juggling my meds for the best possible effect. Three days before I go on holiday I up my prednisone to 15mg. This will give me enough energy for the 3 hour drive, and means (during the day at least) my pain is mild to moderate.

Night time is still a bitch for the most part, and that’s when I reach for oxycodone. Slow release first, and if that hasn’t made things bearable, I’ll top it up with the fast acting formulation, that kicks in within 30 minutes. Then I’ll drink a glass of red wine to help it along a little more.

If I can sleep, the next day will be OK. I will wake up in pain, but it will be bearable. I will slowly be able to wake up and start to move. It usually takes about an hour and a half for me to feel human, and join civilisation.

I often feel very guilty on holidays. Especially now that I am single, and I am holidaying with my kids on my own. I am not even close to the person I used to be. I can join in the play with my kids, but then I need to rest. I feel like I am constantly saying ‘OK, back to the cabin to rest’ and then when I have recovered, we can go back to the beach again, or walk to the shops again, or ride scooters.

I’m lucky my kids are now at an age where they are starting to understand. My son is 11 and my daughter is 10. They both still say to me “I wish you didn’t have arthritis. We used to have much more fun before.”

I’m surprised they even remember anymore…it’s been 5 years now. But they do, and they, like me, hope that one day I’ll find the combo of drugs that might kick my rheumatoid into remission.

If I upped my prednisone to 25 mgs, I would only have mild aches and pains. But I would also have high blood pressure, and anxiety and total insomnia. I get these side effects more mildly on 15mg. It’s manageable.

It’s always a balancing act…the lesser of evils.  Right now I’m lucky that the predisone means I am here at all. Without it, I couldn’t take my kids on any kind of holiday.

But just once, I’d like to be able to go somewhere without taking a whole bag full of stuff (heated throw, wheat bags, painkillers, corticosteroids, nsaids, dmards) just to manage my RA.

Just once.

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