Having a conversation about holidays with hubby this morning. With everything that's been going on with me it's been a no no since October. The sulfasalazine, 3rd med Ive tried, is killing my sleep. Im stopping it for a few days to see if sleep returns. I'm a walking zombie! Hubby, Garry, says he doesn't think we'll ever go away again because of the way I am. He doesn't want me being 'ill' on holiday. I'm trying to explain that even if I get on a medication that suits me there quite possibly will still be days I'm totally fatigued and will possibly still have flares (after reading peoples posts) and will just not be able/want to do anything.
Im trying to explain that I have RA, it's not going to be 'cured' this is my life now I'm beginning to accept that but he doesn't seem to get it. I said so you're saying that locked up in these 4 walls is all I have to look forward to, I can't live like that. I'm thinking a cruise would be the best option. Change of scenery, fresh sea air and everything accessable. If I don't feel I can get off the ship to sight see so be it.
If I have, eventually, meds that help, painkillers and a mobility scooter if needed and understanding from who I go with (hubby) it would be ok. Any thoughts. How do you and yours cope. I'm never going to be the woman he married, he loves me to bits I know as do I him. But surely we all need something to look forward to.
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Haz58
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Hi I don't know really.. but maybe your drug.isn't right for you i couldnt go on with it if it made me feel like that...speak to rhem team tell them whats going on with it ..no reason once your on a good drug life can be good I've been great for some years lived a normal life going out and so on.
Thank you for replying Vonnie. I'm pretty sure it's the sulfasalazine. I usually sleep ok except when in pain. I'll stop them a few days see how I go and just take painkillers. Then can hopefully call them and say it is not working for me. I was told by a nurse that they would try just 2 DMARDS then go for biologics, but when MTX and Leflunomide caused me horrid side effects the consultant I insisted I try a other one. Because my dad died of a heart attack at 52 she said she wouldn't risk putting me on biologics. The way I feel at the moment is at least have some sort of life for even a year or 2 it's better than what I have now, which is pain, o sleep and not doing anything as I can't.
All my mums side of the family all died young through hearts issues most of them under 60 mum had 8 sister and brothers.. my sister died recently 59 and my living brother as a bad heart my clinic was aware of it I've been in biological drugs I didn't know you wasn't suppose to have them. I don't know them but if a drug is making you miserable and no life you'll have to change it ..I know pain is horrible my wonderful drug toclizumab ( biological) changed my life for a good few years but sadly its now failing in a bad flare up onto the next drug for me. But you can't go on living life the way you are .
That's interesting. Horrid for you loosing your family to heart disease. But it makes me wonder if my Rheumatologist is cost cutting They say the NHS is a postcode lottery don't they. Every time I get an appointment to see her it's always cancelled and put back lately. It's because she's going on holiday I've found out. Ironic really.
Is your rheumy quite old,or very set in her ways? If so I would ask for a referral for a second opinion from another rheumatologist……ideas about TNF drugs & heart failure have gone through a lot of changes in the last few years.
Oh dear…..don’t be so pessimistic…….I know before you ”bed in “ with a drug that really suits you it is disappointing every time you don’t feel as well as you’d like…but accepting that finding the right medication can take a while really is the only way to go.
Yes it can take a while…but a high percentage of us make it….& go on holiday!
It is very easy to sink into the idea of never getting a drug that will work ,& tbh it can be your attitude that stops you feeling better. Don’t dwell on the fact that RA is Incurable …it is of course ….but hundreds if not thousands of us lead good painfree lives.
We go on holidays,enjoy a glass of wine & generally lead a normal life…with possibly the odd flare.I’m 20+ years in to my RA journey, & of course I’d rather not have it..,but life is good …so start to think positively …get out those holiday brochures & decide where you would like to go,once YOUR magic drug starts to work.
Stop the negative thoughts & start looking forward to feeling better….in the meantime just do what we all do….struggle on regardless! Hope the SSZ kicks in soon.
I think hubby is being more pessimistic than me. At least I'm saying we will go away. No sleep for a week so I'm grotty. He doesn't understand some people take a couple or more years to get the right 'magic potion' for them. I decided with sulfasalazine id just suck it up. Expected neausea but not insomnia. Lack of sleep doesn't help any illness.
It may not seem like it, but you are still fairly recently diagnosed and you could still see a massive improvement.
We go on holiday, and enjoy it lots. You have to change what you do a bit to make it manageable. For example we always plan a recovery day after a journey, and prefer to go somewhere interesting like an Italian town and explore nearby in detail rather than long trips to major tourist sites.
I would never go on a cruise, being trapped like that would be misery for me. And I would worry about illnesses as always think they are floating bacteria buckets . But some people love them.
Think about what you can do, not what you can’t. You have a difficult disease and this doesn’t mean you are ill.
Thank you helix. I love cruising. Used to love flying but not so much now. I see your point about bacteria buckets though. Hubby got COVID last year on one, tested positive the day we got home, I was lucky it didn't get me.
When your RA drugs are working well you should not be having frequent flares - occasional ones maybe especially if you are going through a stressful time.
It’s more likely that your drug is not working well for you and if it is the Sulfasalazine affecting your sleep maybe it’s time to try a biologic.
Do please contact your Rheumatology consultant (not the nurse) and ask for a review.
I’ve lived a normal life with RA it’s not a big deal, I rarely flare and have travelled extensively without any issues. For some it can be tough but to right yourself off in such a short time is being unreasonable. I do truly sympathise but you could try talking to your RA team and it does take many weeks before any RA medication works and patience is vital. So don’t stop booking a holiday as warmth does help RA and it can be great for the forget about the ills and concentrating on the positives. Cruises are great I’ve done a few because I wanted to and have never used any mobility aids or even needed to. And check with the RA consultant as my dad died of heart attack at 60 but it wasn’t an issue what is that you cannot have the latest drugs because of clotting risks. I have kidney failure and even that doesn’t matter too much because the meds often cross over with transplant meds. Above all, all meds have side effects and time can sometimes sort that out. LEF was dreadful for a couple of weeks then put the RA into remission for 8/9 years. Please book a holiday and if the worse happens and you get a bit fatigued then sit by the pool with a gin and tonic, but don’t let RA rule your life. We only pass this way once , so enjoy your life and go for doing what you want to do; but if you don’t try then how will you ever know what else you can do ?
I’m not disabled and would suggest you talk to your doctor but give each med. a time to work before moving on. Biologics are ok but I’d swap the Abatercept for LEF which worked so much better any day and it is sad that I can’t have it anymore because of the CKD which wasn’t down to any RA med. For some RA is not well controlled but don’t think you’re one of them and let those thoughts inhabit your mind. Stay positive, travel with hope and walk the Pyrenees or see the Inca Temples it is only the fear that can stop you if you let it. I’m a firm believer in staying active and if that day it’s not possible then there is the next day. I don’t mean to sound dismissive but worrying about something that may not happen is not good for the body or soul. Xxx
No I agree. I was trying to say hubby has written me off because of the problems Ive had with meds so far. Perhaps I worded it wrong. After 2 holidays last year where we had to pay to see a doc and go every day of the last holiday to get jabs it's put him off going. He must can't cope if I'm poorly. I have to make him let me do the washing up bless him. X
I had to not go away on holiday for a year or so when first diagnosed as I was very immobile and the pain was awful, but once RA was under good control I’ve been all over. Only thing that’s stopped me in the past 27 years of RA is the pandemic. I think you’ll get stable and your mobility and strength come back. You rarely stay as affected as you are at first when you’re diagnosed. I hope you can feel improvement this year and think about going away. Even if in this country to start with. Don’t be put off by your husband saying ... you'll never .... (as you will! ) You could ask the rheumy re a steroid shot to help make you feel better to contemplate a U.K. break maybe?
Aw thank you kittie. I had another steroid Jab a couple of weeks ago didn't seem to do as much this time. I also had a week of Prednisolone that helped enormously. Yes perhaps we'll hire a bungalow in the Cotswolds or something for now. I like it there. Nice and flat where we go. 🤔😊
This doesn't sound great. You need to contact your rheumy again. You also need to think more positively. It is more likely the worrying that is keeping you awake. Maybe you should speak to your GP about your anxiety. None of us wants to take these drugs but the alternative is out of the question. I wish you well.
I do find that whatever the medical issue is, it takes a while to get your own head around it, find some acceptance etc. And you've been living with it for a while, whatever it may be.
OH, family etc are then somewhat behind you in the process.
Give your husband time, he'll catch up. Especially if you're positive about what you can do...this should get him past what you can't.
And a wee cottage in the Cotswolds as a stepping stone sounds great
I think both yourself and your hubby, are still working your way through the grief process. Denial, Anger, Bargaining, Depression and Acceptance. A new normal is possible, but we need to think positively and not expect the worst all the time. There is no reason you cannot go on holiday, in fact sunnier places can be just the tonic you need.
I’m not sure how long you’ve been on sulpha, perhaps asking the gp for some amitriptyline may improve sleep and help pain at the same time. I have ankylosing spondylitis rather than RA, but it affects every joint in my body, I have fusion including my ribs which makes walking challenging as my chest doesn’t expand. My feet look hand knitted from the damage, and have subluxed toes which make walking challenging. I still ensure I get away on holiday, or go and visit family when I can. Once you get to acceptance you will hopefully understand that life goes on, and you can achieve anything, with a bit of pacing. I suspect hubby’s negativity is being fed by your own negative thoughts.
Contact your rheumatologist to discuss options, you should be in a partnership with them, not a dictatorship. If you wish to try biologics that should be an option, if you meet the strict criteria. They can then document in your notes that you’ve made the decision based on the risks and benefits, and are willing to try. As someone else said it’s quality rather than quantity you’re after. I had a severe stroke at 52 due to an adrenal crisis. Any stress, illness or infection can put me in another crisis, with the risk of death. I refuse to let it hold me back though. Family are all trained to administer an intramuscular injection to me if needed, then get me to an A&E asap. I still travel, many times alone to visit family, some of who live in Spain. When in Spain my pains are always so much better. The glass is half full, not half empty. Get those brochures out and start planning, you only live once. There is so much assistance available on the journeys, and once there you can just chill if that’s what you want. Hope you can see soon that life can still go on. Take care 🤗
Bless you and thank you Runrig. On reflection I've had so much happen since October, broke a vertabrae which they kept treating as muscular problems when finally my Rheumy got me an x-ray,bad reactions to meds etc it's no wonder we are both very wary. Hubby is just waiting for the next hurdle I think. Probably so am I. I still didn't sleep last night much so i will take the sulfasalazine again and see what happens. Im waiting for a steroid I jab in my hip. Hopefully that will help with my walking problem. Then we,'ll see about going away. 😊
Just to let you know that I have had Rheumatoid Disease for more than 40 years. I also fell over while dancing 18 months ago and broke 2 vertebrae. Currently my partner and I are self catering in a cottage and I'm walking about 4 hrs a day with a walking frame. Once you get sorted out it becomes possible to to do all sorts of things. Yes there is pain but also enjoyment.
It’s very difficult when you’re having issues with RA meds and beginning your journey with a difficult diagnosis especially for those who care for us. As far as considering a holiday I’ve managed to go away when things have been mighty tough and cruising is my go to choice. This is primarily because if I’m not too good and mobility pain and fatigue are a big issue then I don’t feel guilty about staying on board the ship and if I don’t fancy getting off to explore then I don’t have to. Most cruises have a day at sea initially so that gives me time to recover from the journey. It’s perfect for me and my hubby we do tend to go on the smaller ships. As others have said don’t put off a break even if it’s difficult or stay somewhere local if you want. The change of scenery is worth it. I’m going away for the first time in 4 years this year and I can’t wait, hubby’s looking forward to a week with no cooking and washing up too. In the past we’ve just had a weekend in a hotel usually with a spa about five miles down the road and it’s been great so my advice go and have a break. I’d definitely try to sort an appointment out with your rheumy though about the SSZ issues even if it means you lower the dose for a while and increase it slowly until it’s better tolerated.
Every one has given some good ideas about the medical side, and the grieving side (are there support groups for spouses?) so I just want to talk about holidays.
Yes, these new fangled things called holidays! It wasn't that long ago that no one had more than a day at the seaside, or a picnic in the park on Mothering Sunday. But we don't look at that, we see the wealthy aristocrats going on The Grand Tour and skiing and the like, and think that that was what everyone did. They didn't. And even when the 'two weeks a year' holiday started, most people didn't go abroad.
When my son who is now an adult was small and we first realised he was disabled, I started thinking about holidays. And listening to other people especially women telling me how awful a time they had. How they had to work twice as hard to get everything ready, then still didn't feel on holiday when they were away, then the mountains of washing when they got back. And I thought why do we go on holiday?
If it is to see different things, maybe I could replicate it here. I remembered going through the back roads of France on the motorbike and marvelling at dropping down into a valley and the beautiful scenery opening up before me. Then I realised we have a similar valley in the next town. So now when i drive to town I go wtih my 'holiday head' on and marvel at the beautiful country we live in.
Someone said "And a wee cottage in the Cotswolds as a stepping stone sounds great" well, I live in the Cotswolds and tons of people visit here every year. So why am I thinking I need to go somewhere else? Yes please, take a wee cottage in the Cotswolds, Devon, the midlands, Scotland; we live in a country where 40 million people visit us each year! It must be a good country to visit!
Because of my son's disability we can't go away for holidays, so I have them from home. We try to visit a local attraction every summer and that is our holiday. All within an hour's drive. Tintern Abbey was a favourite when he was younger, and there are all those castles in Wales that were within driving distance. He is more disabled now, so we don't go out as far. Sometimes it is just walking to a place and watching the sun set. I satisfy my desire to learn more about other cultures by doing online visits to museums, or even just doing a Google Earth random view of somewhere I have never been and will never go.
I have friends that 'go to France' every year by buying wine, cheese, pastries and so on and have a weekend of picnics in their own garden, doing nothing but listening to French music and enjoying food they normally wouldn't buy in England.
But if you do want to travel, don't let your disease get you down. I had a dear friend with RA who recently died in her 80s. She was diagnosed in her 20s long before drugs were around to control things. The only way a single women could travel in those days was to work for the government, so she got jobs teaching children of civil servants or armed forces personal in places like Hong Kong, Thailand, and everywhere in between. But only for a 10 years. After that she settled in the UK and as her disease progressed and she aged she stopped going on holiday. I noticed the same thing in my in-laws. They were well enough off to travel when he took early retirement, but as they aged they travelled less and less.
So it could well also be that your husband is struggling with the normal 'as we get older we don't travel so much' idea that comes to most people as well as well as adapting to your capabilities.
I hope you find something that suits you both, and I can highly recommend that wee cottage in the Cotswolds. We do have lovely sunsets here!
sorry to hear you’re suffering like this. Perhaps the best thing is to consider a UK holiday and not go abroad. A nice hotel or self catering where you can chill out if not feeling great. We’ve just come back from Cotswolds and off to Norfolk in May . Plenty of lovely places in Uk that are lovely x
I agree, I do that now, choose a cottage maybe near an attraction, sometimes attached to a hotel so we can have breakfast and maybe have an evening meal delivered to the cottage. I have a supermarket delivery sometimes to the cottages. Everything at our own pace. And there are some gorgeous cottages in the UK.
I booked a cruise and then came down severely and cripplingly with RA a month before going. I could hardly walk and was not sleeping well. All I was taking was co-codamol which didn't do much at all. To get there I had to take a train, stay in a hotel, then take a flight and another hotel before boarding the cruise. I won't say getting there was easy but we made it and the cruise was the best temporary cure. OK I was still in pain and immobile and I didn't go on the excursions but just sitting on the balcony watching the world go by having everything done for me was just so refreshing. I'd had blood tests just before going and when I got back had the consultation and was shocked to discover I have RA. I would definitely do it again in the same circumstance. Of course I would have preferred to be healthy but I'm so glad that I didn't cancel. The only thing that I'd do differently is take a cruise that starts in the UK so that I didn't have to do all the travelling to embark. We finished in the UK and the return was so much better.
Yes we go from Southampton when we cruise. Only a couple of hours coach trip to the ship. Like you say the ships are great with a balcony. I love just sitting watching the sea it's so calming. I've now got it in my head once my hospital appointment is through and have my hip steroid Jab and once I'm settled on the RA sulfasalazine, fingers crossed, we'll do something. A change is as good as a rest and it'll do hubby good too.I'm so sorry you had to join this RA club too. 😊
Oh dear! So sorry to hear of your sleeplessness and also the difficulty of convincing Gary that RA is a lifetime, chronic, systemic disease.
Sulfasalazine could be the immediate problem - it's not controlling the symptoms of the disease. But trying to convince people - even those closest to you - of the relentless nature of Rheumatoid Disease, is not easy. Perhaps your first step should be to talk to your rheumatology team of the ineffectiveness of your present medication.
I know how hardgoing it is to explain to others the true nature of RD. That is a bugbear. Many contributors to this forum have the same trouble. But there is quite a lot of literature available from NRAS explaining in simple terms the long-term effects of the disease. Perhaps Gary would understand it better if it was explained by professionals.
Thank you bienassis. He just hates seeing me struggling. He now comes to my appointments with me so is getting a bit more knowledgeable. My body just doesn't like new meds, I'm like my mum was. But I'm taking the sulfasalazine again after missing yesterday. The GP has given me nefopam to try to help the pain. So I'm trying to forget about the very bad experience with MTX and Leflunomide and just take them. Hopefully my sleep will return. If not in a week I'll seek advice. 😊
What a pity about the MTX and Leflunomide! Some people have so much trouble finding something suitable - just anothe aspect, I'm afraid, of this problematic condition. Everything can be "hit or miss". In that respect I've been one of the lucky ones - 25 years on MTX - since 1998, and no side-effects. In 2020 a biologic was added - after a couple of flares - but it was finally stopped after unacceptable side effects. I now cruise along on just MTX. So far, good enough!
I do hope you manage a suitable holiday this year - but get comfortable first.
Once they've got your drugs sorted out, you will be on a lot more of an even keel & able to do a lot more. My husband and I love our holidays and still continue to go on them. We have had to make some adjustments due to my health.
We love city breaks and always used to walk everywhere (you see more of the city that way) but now we often use public transport. So if I'm having a good day we will walk to wherever we are going & get public transport back to the hotel or vice versa. If not, it will be public transport there and back. Occasionally, we may have to cut the day short & only go out for half the day. If I'm having a bad morning we may not go out until lunchtime.
The other thing we do, if necessary, is what we call a "bed picnic". If at the end of the day I'm very tired or in pain, my husband will go to the nearest supermarket & get a bottle of wine, bread and butter and cooked meats & we eat in the room, so I don't have to walk to a restaurant. He claims he actually quite likes this!
Everybody needs a holiday you may just find little tweaks will make them just as do-able as they always were.
I went on a cruise before covid. We went to Norway for a week. One day at sea five visiting places and one day back. Boat had doc on board hairdresser and dentist. Food was excellent lifts everywhere and staff could not do enough for us. Even arranged at taxi in one port so I did not have ten mins walk to town centre. It is a glorious option. 🌹
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