My worries today

When I saw my RA Consultant she told me that my RA has now gone into the ligaments in my legs and that my ankles have locked, meaning they do not move in any direction. Coupled with oedema and an awful lot of pain I hope you can understand my concerns about our flight to LA in a few days time. Am I mad to be doing this? Should I put my body through this? What happens if my pain is acute during the flight? Up until yesterday I was a little more positive but I am worrying about the whole trip.

Has anyone else flown with pain, oedema and RA?

You have all be so helpful and supportive and I appreciate your comments.

Thank you

21 Replies

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  • Hi DandyLad. Have you discussed this with your GP yet as you said you would? If so what did he or she advise? Also have you spoken to the airline about your health issues and do you have any idea about how much you would be able to move about? Could they perhaps sit you at the front with extra leg space and more room to move about? I don't suffer with your health problems and haven't undertaken a long distance flight since I went to India in my youth (when I was 22!) so can't even relate to that much but I am a worrier and am already fretting about the 3 day drive from Orkney to Cornwall with two dogs and two teenage sons in July so I can really understand your dilemma at least. Good luck with whatever you decide. Tilda x

  • Hello Tilda, it seems that you have your own journey to make. I would suggest looking at your route and breaking it up, if you can afford to, and stay in a Travelodge hotel or a cheap B+B. I am sure your sons wouldn't mind as would the dogs. Both of which accept dogs depending on the B+B, there has to be a guide to them and staying with dogs. The shoes I ordered from Cosyfeet are a tad too small so they'll go back and exchanged for a larger size. I think that my attire will change from smart to oh so very casual and comfortable as I do swell up a fair bit and I do have some shoes from my local hospital appliance department that look like a pair of Minnie Mouser trainers!! I saw my GP yesterday he says 'Go!' So although very very hesitant I think that I will have to go. My partner has been my carer for a couple of years now (due to other health issues) and if anyone deserves a fantastic break it's him. So I had better raise my legs, relax and think of all good things LA and San Francisco. Thank you for your comments Tilda, you were the first to arrive, I do appreciate it. I wish you well for your drive, just make it an adventure and see where that takes you. With all good wishes

    Paul

  • Hi there Paul,

    I wonder whether it's time to throw caution to the wind? I quite like that phrase - it sounds so liberating - but then it's not me that's facing the flight. But maybe the decision to go is only a tiny bit on the reckless side because your GP has given you such an unambiguous message ....

    It does sound as if your decision is more than 90% made & I'm beginning to think that getting on that plane might just be exhilarating. From your comments to Tilda I can really relate to your approach to travelling - I too hop from one Travelodge to another if I can (though they've recently put the dog charge up to £20 a night damn them!) - so sounds like you are experienced in pacing yourself. I'm just intrigued now as to what you decide, good luck to you,

    Luce xx

  • If i do not think of me but my partner then yes we are going. He gave up his career to become my full time carer and he deserves this trip more than anyone or any other thing. It is a 24/7 job, worth about 70p an hour, and apart from the continuous thanks from myself and my Mum there are no others. He does it because he loves me and we have just celebrated our 15th anniversary so aslong as I keep thinking of him we'll be on the flight no problems. This is a gift from me to him and from him to me. We're going to go, have an amazing time and dwell on golden memories for ever. Reach for the stars, that's what we'll do...

  • Plse don't forget anticipation anxiety is far worse than the actual event,worrying beforehand etc etc,you may see obstacles in your way which may never arise.look forward to a lovely holiday enjoy the sunshine the break,the everything,I bet you have a holiday of a lifetime,as well as you having a fab hubby,he also has a very loving wife :))) lots of love Michelle xxx

  • take advice from gp i think a hol would do you and your partner good but I would be a bit edgy about long haul unless gp has sanctioned it/ have you med insurance and have you c;learly declared your ra//

  • Hi summer, all cleared by GP, all drugs arrive Friday.

    It is full steam ahead, summer I will let you know how it went

    when we get back.

    A note to others. I share my life with my partner Terry. He is not my husband and I am not his wife. We are not married but have had a Civil Partnership Ceremony. We have been together for 15 years.

    Thank you for your continued support.

  • i noticed this dont panic have several gay friends my best male mate is gay not a prob I Know you are equal partners x have a great hol x

  • Hi Paul

    Sounds like its all systems go for you and Terry. I hope the flight goes well and more importantly that you & Terry both have a fabulous time. You both deserve it by the sounds of it with your illnesses and Terry being your full time carer so get out there and ENJOY!

    Let us all know how you got on and what a fabulous time youve both had. We want to know about all the amazing sights and places on your return.

    Take care, throw caution to the wind and more importantly enjoy it as much as you can.

    Jo

    Xxxx

  • Don't forget to post some pix when you get back! Have a fab time both of you! xx

  • Yes I'm with everyone else here Paul. Go and throw caution to the wind. Terry deserves it, you deserve it and if you would just stop worrying I think you'll be fine. Photos and a travelogue blog afterwards please! Xx

  • You and terry have the time of ur lives xxx

  • Hi there as above caution to the wind would love to go too!!! please loads of pics have fun xx

  • Thanks to you all, especially summer, booked taxi to take us from Brighton to hotel at heathrow on Sunday. Fly out Monday... Last night I felt excited for the first time and have accepted the fact that although I won't be able to walk anywhere I and we are going to see everything we possibly can to make sure we have the time of our lives.

    So, thanks again without your help I would have cancelled this holiday and regretted it.

    Tally ho!!

  • Go and enjoy.

    Wish I could do something similar for my live in friend, we depend so much

    on our partners and friends and many of us can do little to repay them

    apart from saying thank you over and over. It seems so little for all they

    do and the sacrifices they make on our behalf.

    Hope you come back home with many wonderful memories to reflect on.

    Ann xx

  • I agree with you Ann. I make a point in thanking Terry every day and when I can I try to arrange something I know he will enjoy. We have had some wonderful dinners out, been to exhibitions in local museums and in London. There are many ways to thank the special people in our lives, I certainly do not take Terry for granted, he is a one in a million and I believe that he was a gift from God. You might poo poo the idea but I was in a terrible state when I arrived in Brighton, I met him the next day and from the moment I saw him I just knew he was the man for me. He became an Angel not only to me but to my Mum aswell so I have a lot to be thankful for and I am grateful for all the positive comments I receive on this site, including you Ann so lets make a point of celebrating the special people in our lives.

  • How wonderful Paul, that you have such a lovely person as Terry in your life :-)

    I'm with you.. I truly believe things happen for a reason.

    Wishing you both an amazing holiday. May it be everything you want and more.

    Love Janet xxx

  • Thank you Janet, I know I am truly blessed to have such a wonderful person in my life and I thank God every day. Although slightly apprenhensive about this trip I know we will have a great time and I can't wait to see everything, sit back and relax.

  • Not long now Paul. Hope that you and Terry have a wonderful time.

    Wendy x

  • Thank you Wendy, how good of you to remember. Just got up, first amount of Oramoprh. I am trying not to look at our 2 boys who are going to be whisked off to the cattery, I always feel so guilty but I know they are going to a good place and will be well looked after. Taxi at 1300h and that will take us up to our hotel at Heathrown. Tomorrow morning!! It's a case of 'Yippee!' and 'Oh dear what on earth am I doing?' But the former will overcome the latter. By lunch time we'll be well on our way. Thank you for your help and support, everyone bar a few has been very supportive. Yes I will post photos when I get back. Thanks again.

  • Hi,

    Just signed and read your latest fears. Rest assured, I made it to Hongkong with one knee that doesn't bend last December (always request a seat in advance) if its a 747, I like the few side rows at the rear which are just two seats and extra room near window.

    I am on rituximab, but took, codeine, paracetamol and oramorph, to get me through. Sometimes the adrenalin of a new experience helps the joints, it sounds funny but it gets me through. Its not long now, and I wish you the most wonderful holiday of a lifetime, its amazing how helpful everyone at the airport is, your excitement will make you forget some of the pain, just make sure you take all your painkillers, and try to work out the best doses for time change ie 8 hours.

    Jennyxxxx

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