Hubby and I have been invited to the wedding of a family member and as they are travelling from abroad we had to accept/decline early in March. We accepted but since then I have started on Metaject and been floored by tiredness. I now feel unable to travel to the wedding (three hour drive) or to cope with the day on the whole but don't know how to pull out at this stage as the wedding is only a matter of weeks away. The family situation is a bit delicate and rather fraught and I have not met the bride to be as yet so am finding forming the words difficult. It is a formal wedding and places were limited so I feel uncomfortable about not going and hubby would hate to go on his own. Any ideas on how to handle this situation will be most gratefully received.
BTW Metaject has been helping me and my blood tests are very positive but I have developed very sore soles of my feet and swollen toes, very odd.
I hope you are all having a lovely pain free day and enjoying the tennis. x x
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alsmum
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It's so hard isn't it? I think it's one of those situations that seems straightforward unless you are the person it's happening to - I know I'd get tied up in knots. But from where I'm standing it looks like a good idea to write a letter to the couple and explain exactly what you've explained here.
Perhaps it would be as well to anticipate some level of ignorance on their part about RA (!) i.e. by pointing out that before you had this condition you didn't realise what drug or RA induced fatigue really meant.
Don't feel bad (again - easier said than done, I know!) it's not your fault at all. Hope the Metaject continues to help.
Thank you, Luce for the quick reply, this has been giving me sleepless nights until I thought of asking it as a question on here. The lovely thing about this site is not having to explain what RA does to you and the caring and understanding of the people on it. I have spoken by email to the future bride and she seems a lovely girl so contacting her directly is a good idea. Thanks again. x
My nephew got married in May, like you my journey was a long one,(3hrs), plus I had to attend the hospital beforehand, I explained to my nephew that although I would be attending I would be extremely tired and that I may not stay the whole time. He fully understood and said he valued my actual presence however short it was.
My advice would be to do the same and see what they say. I managed the ceremony and the meal, after which I found my nephew had set aside an area specifically for me to have a rest so that I could stay for a whole longer, it was a quiet area and I could put my feet up as they were hurting and burning, I closed my eyes but did not actually sleep and rested for a good three quarters of an hour, before returning to the fold. Hope this helps but at the end of the day you have to do what is right for you and your situation. xx
Thank you, Georje. What a lovely nephew you have. This is a good idea too. I am usually a bit reticent about talking about my RA as I find most people think it's the same as their own aches and pains and just tend to glaze over if I start to explain. But perhaps it's the time to start. Thank you for the good advice. x x
hi There, I was wondering what sort of relationship you have with your Rheumy team, last year we celebrated our Ruby Anniversary and I arranged a party but found the dreaded Ra bared its teeth, I use metoject and also am on my second year of Rituximab anyhow the Rtx was in its 5 months and I knew that I would be jiggered for my own party, I spoke about this and the Rheumys suggested I took a steroid for a week just to boost me. I had 5mg for 3 days then 2mg for 2 days then 1mg for the next 3 days then off. It really helped and I was able to enjoy our party BUT I did rest the day before and the day after I did nothing. I hope this helps e all enjoy a good wedding, also if feet are bad I was given this tip decorate a pair of flip flops or scholls whatever footwear is comfy put a flower on it or a bit of glitter, tadah fancy footwear.
Thank you, Tricia P. I love the idea of the glittery flip flops, definitely me! I have a really good Rheumy team so a good idea to contact them. I never considered this at all, so thank you for another good suggestion. Hope you are now getting on well and RA is controlled.
Great suggestions so far, so hope you're feeling less intimidated by the whole idea and what you do about it. My other thought is that when I say to people that I have to inject myself with a chemotherapy drug once a week they get the message that it's no walk in the park. I've found that saying MTX means nothing to them. But whatever you decide to do I'm sure your relatives will understand. Polly
Oh thanks, Polly. I do feel less intimidated by hearing all your kind and supportive comments. I've maybe allowed this to grow arms and legs instead of just dealing with it. I'm definitely going to say to people about injecting a chemo drug, it makes it sound like it is - far from easy. Many thanks. x x
Hi you've already got some amazing ideas, I've been invited too three weddings since RA on all three occasions I've booked into the nearest hotel to the wedding venue, and pre explained to the wedding couple about tiredness etc.
Each time we traveled the day before to avoid tiredness from travel on the day, and I then went to the ceremony and spent a few hours at the reception before going back to the hotel for a few hours sleep and then returning a few hours later for the evening part but was always back in the hotel and in bed by 9- 10 pm as I couldn't last longer, on one off the weddings I was very very poorly and didn't even have the energy to wash dress etc, let alone attend the hairdressers etc, luckily the hotel hairdresser came to my room and just did the best she could with little effort for me with hair and she even did my make up, my partner dressed me and we attended the ceremony and I didn't need to explain anything else they knew I was very poorly on this occasion we gave the wedding couple our hotel keys explained everything was already paid for, for that evening and the next and we left I slept in the car on the way home and enjoyed my own bed when I got home.
I felt better in myself that I had made the effort myself but they said they would have understood if I didn't
Thank you so much. Sometimes you think you are the only one facing dilemmas, not so. I appreciate your advice, we are staying at a hotel the night of the wedding but what a good idea to go down the day before. I think to do what's best for me is a lovely thing to say as I think we're all perhaps guilty of not always doing what is best for us. I hope you are well now and having more good days than bad. x x
I can so relate to this problem and think the advice you've been given is all spot on. I got into a complete tizz over a month before I had to sing in a big concert ten days ago but it went fine in the end. It was the night I inject my MTX and I've come down to a lower dose now because it makes me so ill still. I was okay in the end - ran on adrenalin - managed to climb off the stage after an hour of standing and singing and hobbled to the nearest chair. I got home late and injected then and was still able to function the next day just about. I think Polly is right to suggest you mention injecting a chemo drug. I do say this to people sometimes - when they seem to be making light of what I have told them about RA. For my RA the Metoject works briliantly at 17.5mg or over, but for me it's awful that I've had to drop to 12.5 now. I get so panicky about travelling and making plans now. Only people who have RA and take these drugs can understand this - even my OH doesn't fully get how much planning goes into everything now and how much I live in fear of an RA flare up while on holiday or away for work. And I'm packing for a holiday now and trying to work out how to fit all the drugs, including emergency supplies in! If you can take steroids I think this is a really good suggestion and it may help shift the RA away from your feet too. Tilda x
Thank you also, Tilda. I have had wonderful advice from this community and feel warmed and supported by you all. I hope you have a restful and pain free holiday. x x
Hello there, I have only just seen this posting so please excuse this late response. I would have thought that your health is your number one priority and that the sooner you can resolve this issue your stress levels will also lower. I would not go to this wedding but contact them and give them the honest facts, with that I am sure they will understand. Make sure to ask for a photo of the day and some of their wedding cake as that would also affirm your interest in their special day. I wish you good health and happiness.
Thanks, DandyLad. I have had some great ideas from all the answers and appreciate everyone's support. Just sharing my worries has helped enormously. x x
Hi, I had a similar problem but kind of the other way round! My niece got married in USA in March. I knew I couldn't make the trip, healthwise and finance wise and hubby said would I go on my own, we could afford that? No, cos I cant travel that distance alone!! Had to say no, they asked was it money or health, I said both and they were fine about it, I think mainly cos of the health predicament. I know yours is in UK but honestly, it will be a long, tiring and for you probably excruciating day and hopefully they will understand. My niece had a small party here in June for those who couldn't make it and we went to that. it tired me out but I did it and enjoyed it. I think you must consider your health first, they should understand. Also, if you were not fit on the day, what kind of "burden" would you be and you don't want bride and groom worrying about you.
Why not explain on the phone or on person? and if you are on the internet - are you on Skype? See if you can Skype them at some point perhaps the next day or the day before to wish them well. My family members even Skyped after a funeral that one of them couldn't get to and it was actually great fun - we all drank wine and toasted the loved one and had a nice chat.
I don't blame hubby not wanting to go on his own - and to be honest, I don't and cant tell lies, but pad it out a bit if you're comfortable with that - i.e. lay it on a bit thick! (Am I naughty?)
You never know, there may be a couple of people they had to leave off the guest list that might be thrilled they can now go.
I don't know details of the family but I strongly believe that people who really care about you will understand, maybe disappointed but I'm sure they will understand.
Naughty - but nice, Lynn! Thanks for all your good advice. I'm sure our places will be snapped up if we don't go so that makes it a bit easier too. x x
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Family (2) and other Animals
Metaject - disposal on holiday?
I ways wondering if it is common to suffer from hot sweats and if this was a symptom with having RA or poss a side effect of the meds poss?
