So how is everybodys' week? Mine has been pretty eventful I must say. I probably should have mentioned that a while back, during the depths of despair when I returned home jobless, in agony and generally feeling like the "crap had hit the fan" (I'm sure you have all been there at some point or another!) I made a decision to take myself off around this big wide world. Now, for someone with RA it's probably not the wisest decision and most responsible way of dealing with things but at the time I had a sort of "sod it" attitude to life.
The plan involved me joining 5 of my friends whilst they gallivanted around South East Asia (Thailand, Cambodia, Laos and Vietnam) and then make our way over to Australia. The trip was to be for 3 months or so. I know what you are all thinking (well those of you who have RA anyway) "How on earth is she going to manage that?" Well the simple answer is, I'm not.
It's a sad fact that those of us with long term illnesses have things to consider when thinking about the future and making plans. Unfortunately my attitude towards this trip was not quite realistic. Don't get me wrong, I had discussed with doctors beforehand and they warned me of the consequences (catching awfull diseases on top of the one I already have, tiredness from travelling, bad food, too much sun etc etc) However I pretty much thought myself invinsible at the time and couldnt see what else I was going to do with my time. It was something to look forward to I guess, something to achieve and work towards. The only thing I had to do was get better...
So now we are a few months down the line and my head is (somewhat) clearer I returned to see the doc yesterday to discuss the trip further. I was due to leave at the end of September and return just before Christmas. Now what I didnt really consider was the new treatment I am on. As I previously wrote about in an earlier post, I had my first Rituximab infusion in April of this year. The doc explained that not only do I need to be closely monitored after my hospital admission a few weeks ago, but I also need to be around in October for the possibility the infusion may start to wear off (you can only have Rituximab at least every 6 months and it works differently for everyone).
If im off on a jolly around god knows where in the middle of some third world country and it starts to wear off, what exactly am I going to do then? I stupidly didnt consider this at all when I booked my ticket. I have spent pretty much most of my life not considering the consequences of my actions but when your health is in mind you really need to start taking some responsibility for it! (or so i've been told).
The fact of the matter is I cannot go to Asia. As much as it saddens me to let my friends go off without me, I need to take this seriously. I can no longer do as I please and expect to be healthy and pain free, I need to do as much as I can to prevent my situation from worsening. This is not to say that I can't still live life to the full though my friends, do not be put off by this. It simply means we have to consider alternatives. For example, I now plan to join my friends on the Australia part of the jolly for 4 weeks (safer, everyone speaks English and it doesnt clash with my Rituximab treatment plan). So there is always a way around things. I luckily have very supportive friends who understand the seriousness of my condition and wouldn't want to jeoporadise that.
Off I go then as a lone ranger to explore the delights of beautiful Australia later this year. Whilst I encourage you to not let your disease ruin your future plans, sit back for a while and consider how you might make things a bit easier on yourself and take responsibility for your own health, no-one is going to do it for you (unless you have a really bossy doc).
That sounds like a very mature way to handle the situation. Thing is, as gutting as it is not to be able to go for the full tour, people's plans change all the time. RA or not, plans are made to be broken and no one can do everything they plan to do, whether that be due to money issues, family or simple a change in attitude. Glad you're going to Australia, it'll be awesome fun and you won't have to worry!
ReplyDeleteThanks Squirrel, I guess sometimes you have to make a compromise! But I am very much looking forward to Australia x
ReplyDeleteAs you should be (looking forward to visiting Australia that is). Just a few hints from a little Aussie with 23 years experience living and traveling with RA. If you can get a flight that has an overnight stop over all the better.... we are a bloody long way away from anywhere. Every hour do a lap of the plane. Wear the flight socks (get someone to help you put them on first, if you have probelms with hands, get a bigger size, not quite as effective but still allows you to be able to walk at the other end). When booking, advise them you may need a wheelchair, better to let them know and not use it. If you are carrying medications, go through the something to declare line, its usually shorter so you dont have to stand for too long. Always keep a lewtter from your doctor explaining any medications you carry. I have lots more suggestions and if you want any info on getting around Sydney with RA just let me know, apart from having it, I work for the Arthritis Foundation in Sydney.
ReplyDeleteYou are right, travelling with RA takes some planning but is not impossible.I have lived in the UK for a year, been to Ireland, Scotland, Austria, Bali, USA, Canada, South America, Zimbabwe and South Africa. I am planning to go to Florida in November and cruise the Bahamas.