Thanks to all but I am still not sure...: I am grateful... - NRAS

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Thanks to all but I am still not sure...

DandyLad profile image
7 Replies

I am grateful for all the hints and tips that you have given me about my forthcoming flight to Los Angeles. At the moment my RA is awaiting the start date of tocilizumab and as it is in chronic stage both my RA and me can't wait. I have RA in nearly every joint and it seems a daily occurance for me to discover it starting in different places. In the last couple of days it feels as though my RA in my ankles is linking with my kneecaps, it's the most frightful of pain and experience and it doesn't seem to be letting up. I cannot get to a place of calm about this flight and the whole holiday, 3 weeks away seems such a long time and I would rather deteriorate in the UK than overseas. Have any of you been in acute pain and discomfort and sat on a plane for 10 or 11 hours? How did you cope? What was it like? At the moment there is a part of me saying, 'Don't go, why do it?' and the other saying, 'Stop moaning, get on and do it!' What is a man to do?

Thank you all again, all of your replies are gratefully received and I do look forward to hearing from you.

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DandyLad
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7 Replies
sylvi profile image
sylvi

Worry about the things you can do something about and leave the rest alone. It will happen whether you worry or not. YOu will be fine,when you get to the airport tell them of your condition and ask for a seat with lots of leg room aqnd i am sure they will oblige. Now thats sorted out,now get your case sorted and your meds and leave the worrying alone. You will have a fab time.xxx

Dandylad, might it just be possible to discuss this with your consultant? As you said in your previous post, this is a very important trip for you, plus your RA is at a difficult stage ...... considering both those things together maybe your consultant could find time to address your concerns??

Like Sylvi I suspect that the anticipation is going to be the hard bit and the actual flight will be fine. But the more preparation you can do the better you'll feel so why not try to get hold of your consultant or talk it over with your GP in order to decide on the best painkillers etc. & hopefully get some reassurance from the medics as well as on here.

I'm wondering how challenging your holiday will be for you & whether you've built plenty of opportunities for rest into your itinerary? That might put your mind at rest too.

I am someone who worries about absolutely everything so I kind of know how you feel I think! (It doesn't usually stop me doing things though!)

Have a great time,

Luce x

I can see where you are coming from as when I was at my worst I just wanted to stay in good old blighty, and was able to cancel a holiday abroad before it got to the final payment stage. As you have gone further than that I agree with both of the statements already posted, you have saved hard for this and you don't want to loose your money.

See if you can book the wheelchair assistance before you get to the airport, ask for the extra leg room if not definitely aisle seat, when you finally land, make sure you have plenty of rest in between you sightseeing. Even if it means going to bed early!

As Sylvi says, pack and enjoy! xx

allanah profile image
allanah

Hi, ye it happened to me going to Florida. I made sure i had all my medication in my handbag with a note from the doctor saying it was prescribed and it kept in the boxes with the labels on. I also made sure i took regular painkillers and moved up and down the aisle during the trip and drank plenty of water to keep hydrated.

I did get wheelchair assistance at both ends of the trip and hired a wheelchair from the Red cross for whilst i was there as there would be too much walking. I moved my wrist and ankles regularly and used my resting splints that i got from the OT.

The extra room for legs was difficult as they wont allow you in the front seats where there is no room if you are disabled or find it difficult to get up quickly as its a safety exit. However they did give me an aisle seat which meant i could stretch out regularly. If you can afford it upgrade! you will get a better recliner where you can stretch out!!

The heat did wonders for me though and i did feel so much better in the sunshine, remembering of course suncream as we are prone to problems with the sun!! I really hope you can enjoy this holiday as you will not have to cook or anything and you can rest when you are tired. Take your time and pack slowly or buy when you are there!!! lots of love and hope it goes really well, send us pictures lol xx

cathie profile image
cathie

Can you get a steroid injection to see you through just for the trip? I'm in an unresolved situation about my meds and am going to Paris - just for a few days. But my consultant has said that if I need it, I can have a steroid jab. This has made a difference to me in the past - although I dont like to take it very often.

lynn-bel profile image
lynn-bel

I did the same as Cathie whilst waiting for my meds to be prescribed when i first got diagnosed. I had booked to SF and wasnt about to cancel, so got the steroid jab in my hip and felt like a spring chicken!!! It lasted for about 6 weeks.

Had it again when i went to Germany on a business trip that I had to be fit for.

As Cathie says, I dont take it often (just twice) but do ask your GP or Cons. to do this as it should help you.

AS you are in a wheelchair I assume you've asked the airline about what facilities they can arrange for you - they should give you an appropriate seat with leg room etc.

Just relax, remember you are in a warm climate and on holiday, hence no stress - all this will help you to feel better.

Dont worry so much, it will make things worse. Make sure your health insurance is sufficient in case you need it; keep all meds to hand; tell the airline stewards (esses?) about your condition so they are aware in case you need to ask them for help.

Once you are there you can take things easy and dont feel pushed to do too much - rest when you need to and enjoy!

Lynn x

hi, again,

Oh golly, I just so feel for you, I so understand how you feel. Regarding Tocilizumab, are you due to start before your holiday, have you thought to ask your consultant if you could have a steroid jab, just to settle everything down, while your away. you will be ok in premium economy, cause of the extra width and legroom, not too mention a smaller cabin, makes loads of difference, to ones comfort and also it may be possible to have a very light sleeping tablet, just to relax you. Have you discussed your fears with the hospital or gp, and don't forget to get a letter from a medic, to carry with you. I can only reiterate, that once you are on your way, it gets much easier. My last long distance ( I have very little bend in my knees, andin fact most of my joints are affected ) I had wheel chairs in airports, and I did not have to walk much, but in the States, it will not be difficult getting around with a chair, and taxis are everywhere. If there is anything I can suggest, please ask. It is rotten when nerves take

over and spoil things, and don't forget the tenser you are, the more pain you will have. I can only say again, that it is so much easier once your on your way.

jennyx

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