I'm not as active as I used to be on here anymore. I'm finally getting back to myself. I've come to realise over the last year that I have changed as a person and that is fine! I had quite a few personal life blips last year, which set me back for half the year. But I'm actually in a relatively good place now.
I've been taking azathioprine since January 2022 so a whole year now. It's not been without difficulty with constant drops in my WBC but I have actually done a whole year without a bad flare. Which I think is amazing. I'm in pain and have mini flares but not ones that have required lots of time off work! I was able to be a part of some amazing opportunities last year to do with lupus and I survived them without regretting the pain later on.
I use to live a fairly boring life and never went out much. I was never a social being but found lots of great support from groups like this and other online communities. I have become more sociable over the last year and I've been trying to learn how to navigate being sociable and lupus. I recently started a new relationship at the start of December other a failed one at the start of the year. I just wondered how others deal with being in a relationship and lupus. The guy I am with now we saw each other for a good few months before becoming official. I never hid my lupus because I am in no way ashamed of it. He is an amazing guy, super caring and really understanding. Currently, he hasn't had to experience me flaring or not being able to keep up. I am now finding it hard to keep at a good pace especially as we usually go out once a week. I usually just go along with plans and ideas he comes up with and just hope I don't pay for it the next day.
We have been discussing going on a trip in a few months doing Europe by rail. He is constantly telling me just to say when I don't feel great but that is not really my default. I don't like people feeling sorry for me. And my default is to smile and say I'm good. The thought of this trip makes me a bit nervous as I think it's going to require a lot of me! Any tips for ways I can approach the subject with him and not feel like an old granny? I joke about that with him and his been amazing. I couldn't ask for someone better really but part of me struggles to give the uglier side of my lupus away. So any tips would be greatly appreciated.
Love to all of you here as always! My forever lupus family who I am still extremely grateful for, I'm 23 now and I don't know if I'd of survived the last 8 years without you guys
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LouLamb
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Hi LouLamb. I would feel as you do/ the trip truly may be too difficult. The last thing you want to do is push yourself too hard and flare badly after you have accomplished success of being you again!!! Perhaps a different trip. Not so ambitious. One country? And be very honest about your daily symptoms to yourself and him. Hiding or default as you say will not suit your body/brain connection: it will shutdown. Maybe be very specific. One country. One region. One hotel! Best MrsMarigold
That is my biggest worry that I push too hard and end up flaring whilst away. I'd hate to ruin a trip for him. I've let him just book the few trips we've done so far. So I think I will make sure I take part in actually planning and booking this trip so I can scale it back a bit. I think the trip is doable but not as a fast paced one. I'd need a few rest days throw in and I don't think that would really work!
Hi Loulamb I would have to be in a good place to do this trip and would be anxious about it but I’ll be 49 in 4 weeks and have had lupus since I was 18. I’ve done energetic holidays in the past but this year I’m going for more relaxing pool holiday but I’ve had a rough 2 years and still recovering a bit.
I would do it if it’s really something you want to do you’re in your twenties! Go now as honestly I can feel I’m not able to do what I did in my twenties. Especially as you seem to have a supportive partner..
My advice tell him when you feel rough and take that nap.. better to see some of it than none of it, remember to pace and take a mask in case it’s busy anywhere and you feel uncomfortable xx
Thank you. I really want to do as many trips and cool things as I can. Because I know ultimately I won’t be able to as I get older with lupus. So I try and make the most when I can now.
I think a sit down chat with seems to be the best option then. And just explain that I’ll need breaks. And I’m totally happy if I took a break and he carried on.
Definitely will take a mask! I’ve always got one on me now!
Hi LouLamb. Are you planning to go to Europe for the weather or attractions?If you are not and just want a break then why not travel for a break to visit somewhere in UK first?
At least if Lupus becomes active or unbearable, the travel home may be easier. There are so many beautiful places in UK to visit. Not putting pressure on yourself (especially just to please others) is very important living with Lupus because stress can trigger flare.
It's great that you are making plans to have something to look forward to. Hope, faith, knowing your own needs and trusting the process are great motivations to keep making moves forward in life.
We would be going for attractions and the experience of europe my rail. The idea is you can hop on and off as many trains as you like in that time period. So we'd hope to visit 3-4 different places during out trip.
I am thinking about suggesting a smaller trip in the UK before we do this one. Just so I can maybe point out different things to him that could or is going to lead to added stress and flaring.
go for it, but be kind to yourself. Life is an adventure, but as it’s a holiday, make it clear , it needs to be relaxing too, not go go go! Have fun, planning x
Definitely go for it! Pack your factor 50, eat well, sleep when you need it, you’ll be having too much fun to flare… might crash when you get back but you have got it under control now, you can do it again! I felt my healthiest ever when I was travelling, no idea why but I did!
I’ve been aboard a few times and honestly never felt so good in myself. It’s just like a massive change in scenery and adventure just solves some of my lupus problems for that short time!
As for the trip your’e thinking of, it might be a good idea to share some of your thoughts with your fella. It’s a journey for both of you to enjoy and if you’re going to worry about going into a flare or fatigue then best he knows before you begin your adventure. All cards on the table, you might feel more confident trying what he’s suggesting or together you can plan something else you’ll both enjoy. 🤗
Its so good to hear that you’re in a great place at the moment and very happy 😊
My advice for travelling would be to plan out what you want to do and what you think you will be able for . Maybe somewhere that reasonably flat so you don’t use all your energy going up and down hills . Theres always lots of nice cafes etc that you can stop at and take in the your surroundings and people watch.
Just plan rest days where your BF can go do something that interests him, so you're not missing out. Also get the best health insurance you can afford.
Book as many days you can off work after the hols as well. That's when it might hit you.
Thank you! Yes definitely will get the best health insurance I can. Always worries that when I go abroad anywhere. What will the care be like if I need it.
We just did a trip to Belgium between Christmas and NY. Flew over then train between cities. I found it tiring as I’ve had all the winter bugs. I made sure to remind my husband that he would have to lug both cases and that I might not be able to do all the sightseeing with him. I have ILD due to the lupus so I get very breathless. Any energetic things he would have to do alone.
We did a longer trip in the States last May/June and stayed in each place between 1 and 3 nights at a time. Again he would go off and do walks (a lot of the trip was high altitude/low oxygen) and I would stay in the hotel and relax, so it worked for both of us. He did miss me doing things with him, and I missed out on a couple of experiences, but on the whole it was the best way of doing things. He would go off and do things first thing in the morning so I could sleep in.
Sometimes when we’re away he’ll go down to breakfast alone and bring me a plate of pastries and fruit back up so that I can have breakfast in bed while he’s off out.
And also like others have said, try to make sure you have a few days off afterwards if possible, even if it means you come back on a Thursday and have a long weekend to recover.
Ensuring expectations are at the lower level before you go will mean nobody gets disappointed. If you can do more than you thought when you’re there, then great. Make sure you have things in mind that he can do without you, that he’ll enjoy and you won’t regret not doing too much! If he likes museums and you don’t, make sure you know where some are that he can visit, or if he likes cycling and you don’t, find somewhere that he can rent a bike for the morning etc.
Most of all, enjoy yourself and don’t feel guilty about saying you need a rest or a day off from touristy stuff. Plan days by the pool or people watching at a nice cafe.
I worry about things like being able to carry my case around or bag. As the trip will be going around on different trains through out the time. So I will definitely mention to him now and just say I may need some help with that. I may not and might be totally fine. But like you say setting low expectations or what I might need and then anything above is a bonus.
That’s a good idea as well finding things for him to do and I can rest. We like a lot of the same things but definitely something don’t interest me.
It sounds like you and your husband are a good team together!
I can honestly say we’re best friends and that helps a lot. Especially with illness. He also has an autoimmune condition, so he has some understanding too (when I point things out to him 😆).
I think communication prior to booking things and being there when he’s booking will be paramount to ensuring you both get the most out of the trip.
We often put aside a Sunday afternoon to book a trip and work out the logistics and stuff, it’s nice to do it together.
Hi again! I read everyone’s posts and had some thoughts. All of us answering your questions are in difference ent stages of our disease. So, I believe our answers can be a reflection of that. I was sick for my whole life until finally my blood work aligned with clinical symptoms. That was 2016. I’m 65 now. I raised 3 great kids and have a great husband. And I dreaded vacations. Had no idea why I could not keep up or just sleep for an entire day after being in the sun. Or ate the wrong food. You are young and I can see where those who say go for it! Are coming from. Keep in mind each flare is a signal of an increase in disease activity. This is something I wish I had known! Good luck and safe travels🥰 MrsMarigold
Well done girl!! It's hard living with lupus so enjoy your life. You know your body so listen to it. Since your boyfriend knows, it should not be a problem letting him no when you need a rest. Take care and have fun❤️❤️
One of my main symptoms is fatigue. I get so tired nobody gets it. I am 45y, 37y when I was diagnosed, in vacations I was getting so tired I would stop and sit by the sidewalk. My husband was always understanding, but I was the one pushing myself. I actually have to write notes and constantly remember that my energy boosts are short lived. Inside myself I am very energetic, but when I start doing what I imagine I can...different story. The most tiring thing for me is the sun (obviously), so I organize around him 😅. I start early in the morning like 6.00 and find shade as late as 11.00 am, stay in longer and restart after sunset, I split my trips in chunks of 3-4 hours, if I have a 3 hour plane ride, I do nothing afterwards. I actually dislike trains because of the long distances. Most importantly I know if I push myself I will certainly flare. And sometimes it takes months to recover. Choose civilized countries with clear train scheduled, minimum delays reported, keep accommodation simple, not to search two hours for the airbn. Have a beautiful trip!!!
I’ve never done a trip like this and I think that’s what worries me a bit more. As I have no experience how I may react or feel. I’ve done abroad on a plane, and I do make sure I take breaks and don’t do anything the day before flying. And I rest up the day after I get somewhere.
I find if I do too much walking around constantly it causes me to start flaring a little. So I think walks with rest breaks will help. If I don’t sleep I don’t well either 😂
Your post is a new year’s inspiration. You have had such challenges and from such a young age. It is wonderful to hear you are with someone caring. Because of that you don’t have to think that hard. I love that you use humor with him. Hey, they may charge you for over-weight baggage because of your sunscreen.
You might want to remind him what is important for you in terms of keeping from getting to the over-tired point. Long afternoons at french cafes are always great or sitting on a museum bench in an Italian park. I bet he will appreciate that keep him from seeing too many paintings in one day!
I’m honestly amazed how far I have come since I was 15 and thinking life was over. I never once thought I’d even have to consider how I might be on a potential trip like this. Charge us both for over weight baggage because of suncream. I’ve got lupus and I’m a ginger so double no 😂
The advice on here has been so helpful. So I know I need to think about what I’d like to see or do in each place. And have a chat with him and work out a plan so I can incorporate rest when needed. I may not need it but it’s better to have that just in case! Oh I’ll definitely take photos. He’ll be so annoyed with me the amount I’ll take. Hasn’t experienced a long trip away with me yet.
Sounds like a great idea! I’m really happy for you.
I have vasculitis (GPA) and am in my 20s and have done a few trips like this so my suggestion would be to establish boundaries before you go so you don’t end up having a row part way through (this is important even if you don’t have lupus / any other AI / health issue). Things I would suggest talking about before you go (as these are the kind of things that can turn into arguments after weeks on the road):
- Are you happy to do your own thing sometimes? E.g. if you need a rest day and he wants to go off and do something that’ll probably be too much for you (e.g. a long walking tour), are you happy to meet up for lunch somewhere / coffee in the afternoon when you’ve recharged?
- Are there any things that you will be upset if you don’t do or that you really don’t want to do? E.g. one of my friends loves those bus tours, I don’t really like them, so I’ll do one with them. I like museums and galleries, they hate them, so I ditch them to visit those solo. Similarly if he does do something you really want to go to by himself, will you be pissed off?
- How much of a plan do you want to have? E.g. where do you sit on the scale of: Mon - Thursday we’re in Prague to Mon - Thursday we’re in Prague and on Tuesday morning we’re visiting Prague castle at 10.30 for 3 hours.
- Are you going to take it in turns to plan / “lead” what you’re up to? E.g. you put together a plan for Vienna if you speak some German, he does one for Paris etc.
- What are you doing for accommodation? If you’re going to hostels, are shared rooms a deal breaker? (Ahem, note that sometimes you might want a private room for privacy but you can save a lot if you share). Hostelworld.com is great.
- If you go somewhere where English isn’t widely spoken e.g. some parts of Eastern Europe, are you going to try and use phrase books or just rely on Google Translate? Is it worth learning some basic phrases before you go? (Usually yes)
- be clear on how much luggage you are bringing. If you’re backpacking you don’t want to be that person lugging a big trolley suitcase around the old town. If you’re staying in hotels though, that might be fine, it depends what vibe of holiday you are going for. Think capsule wardrobe if you can. Some hostels have washing machines you can use, or you can get kits to do wash your clothes by hand in a pinch. Hotels often have a laundry service for a price.
- this might seem fatalistic but you should have at least a vague idea for how to cope if you break up on the trip. My flatmate realised two days into her trip with her boyfriend that she needed to end it, but he had all the reservations / tickets so they continued on for another twelve days and then she broke up with him when they got back. She regrets not breaking up with him on the trip, as there are things she missed out on due to him. (Their relationship was on the rocks before they went so not saying this will happen to you).
- What kind of tourists are you? E.g. do you just want to see the “headlines” / main sights and get your selfies / photos or are you more the kind of person / people who want to go off the beaten track and wants to get the “local” experience as closely as possible, including learning the local language etc.? The former type of person might think the latter is a snob / hipster after several weeks while the latter may think the former is a philistine. (This is why the first question - are you happy to do your own thing - is so important so you don’t feel like you’re in each others’ space 24/7.)
For you specifically:
- What meds do you need to bring / how long a supply? How many tablets / boxes do you need? How long in advance do you need to order them?
- If you need bloods within the window you are away, ask if the doctor is happy to push them back and get an appointment in to get them done as soon as you are back.
- If you’re going away for a long time (>2 weeks), it may be worth talking about taking an emergency pack of steroids with you - you need to speak to your doctor about this
- get travel insurance early! Yours will cost more than his and this is super annoying but better to have the cover in case you need it. Find / get a “GHIC” card as many insurers insist you have this before their cover kicks in. (Be wary of scam websites when you Google this).
- buy a decent phrase book (ebook may be easiest to carry) - a good one will also have some medical phrases in it.
- have a list of your meds / conditions and contact details for the clinic you are under that can be accessed JIC things hit the fan. You probably won’t need it, but better to be prepared than not
- stock up on FFP2 masks and look at mask restrictions in the countries before you visit. Some countries require FFP2s on public transport including trains. You may also need vaccination proof e.g. Austria’s “3G” rule.
Thank you so much! This is brilliant so many things I wouldn't of even thought about. I will definitely have a chat about him with all the points you made.
Also the things for me to think about. Especially asking about the steroids. That is one thing that does worry me a bit especially if he wants to pass by somewhere a bit colder!
you’re welcome! I’m sure you’re going to have a great time. I’m quite jealous!
If you’re on a student budget as well I’d also think about your location strategy e.g. Scandinavia has beautiful scenery but your budget will not go as far as it would as in Eastern Europe (which also has beautiful scenery). E.g. if you think by week 3 you might be a bit knackered, somewhere like Sofia might be a good place to “recharge” at a relatively low cost.
If you want any more tips, feel free to message me. I’ll shut up now because it’s giving me Wanderlust and I need to go and plan my own trip 😝 I find the planning is half the fun of the trip! 🙃
Hello Lou. I think you have all the advice you need in the above comments. However I would say I’ve done a number of touring holidays both by coach and train and I find them a great way to travel. For a start I can’t lie in the sun so travelling makes sense. Then trains and coaches give you the opportunity to rest and take a nap! I think I’ve slept my way across Europe (and coast to coast across the USA) - if you’ll excuse the expression! So I would definitely go for it. The experience of seeing different countries will be great. Pack loads of Factor 50, packable hats, lightweight jackets and even consider a parasol. And enjoy every minute.
Any thing out of your comfort zone usually causes stress and that normally leads to a trigger factor of a flare up even if a tiny one. So far,it appears that you have been having a good run , suggestion take a day as it comes don't think about it enjoy your trip and hope and pray for the best of your outcome.
It is good that he cares , let him know on days when you are not well enough, don't feel that you really have to go along on days you feel unwell, because you and your body will pay the price for it.
For now, you have a decision to make and make it wisely for the next few days
It’s a very tough balance between living life while we’ve got it and not killing ourselves in the process! Quality of life is a thing, I would hate for you to never travel again because of the ‘What Ifs’, but at the same time, I want you to be well. I am planning a holiday atm and I plan for rest days or ‘lazy slob’ days, which helps if I do have a mini-flare. I also plan a long stay between flights, rather than doing one long slog overseas. I feel much more human that way, and I enjoy the travelling far more.
The other thing you touched on was finding it difficult to speak up—I hear you! My default is to go along with everyone else. I am getting better at saying when I feel really bad, but what I’m working on is communicating my early warning signals. I am learning that when my energy starts to decline, it starts very slowly, and then it falls off a cliff. If I wait for it to fall off the proverbial cliff before I say anything, it’s already too late. So I’m working on saying, ‘I’m fading’, in the early stages of fatigue. Helps me and my carers plan a bit better. It’s not a perfect system—but neither am I!
I am trying hard to work on speaking up now. I have done it a couple of time just when general going on. Even dragging someones arm back to get them to slow down. I've learnt it is no fun for me to being for it pain or fatigue wise the next day or next few days!
Exactly, we’re the ones who end up paying for it! I’m glad you’re trying with the speaking-up thing, it’s hard when it doesn’t come naturally, so good on you!
wow loulamb, how you've grown since you 1st posted on here. You're an inspiration to all, especially young people starting their lupus diagnosis. Never stop being you xx
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but you can save a lot if you share). Hostelworld.com is great.
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