Stuck on holiday

[Stuckonholidayagain]

We’re presently on our family holiday, which is in the Austrian Alps. Husband and teenage son wanted to come. However whilst booking I suggested I stay behind due to chronic illness. I had major neck/chest surgery 18 months ago and have ended up with some nerve damage. This affects my voice & makes breathing harder into my right lung. Also been diagnosed with hEDS/POTS which Dr thinks has sadly been aggravated by the surgery. I get fatigue, low BP, HR spiking on standing and pretty severe joint/nerve/muscle pain amongst other things.

At home I’m lucky enough to have the ability to pace which really keeps me on an even keel as best I can, breathing is not too bad as long as I’m on the flat. I get good days and bad, and have special pillows and things to help. However we’ve come on this holiday and they are pressurising me to go on long walks, many uphill, and there’s not much else to do here tbh. I can only do small flat walks. Today I’m stuck in the holiday home alone as they’ve gone mountain hiking. Yesterday we did a shorter walk (but partly uphill) and today I feel awful.

Husband just seems totally in denial I’m not up to this anymore, I use to be a very keen walker and I’m really angry at myself for not standing my ground and staying home. Problem is they both made me feel so guilty about not coming. Not sure posting here will help, but it’s really getting me down that because I don’t look ill, husband thinks I’m just a little under the weather. I’ve tried explaining for me, life has now changed as the nerve damage is permanent and we need to adapt but it goes in one ear and then out the other. I’m quite happy for them to do things like this alone and not sure why they feel I should come too. Sorry for the rant, just frustrated and feeling cross at myself for coming & wishing I was home! 😣

We’re near Seefeld. We have been here many times before I was unwell. It’s a favourite. If I was fit like before I would be up hiking with them like I use to. But it’s getting them to accept things have changed. I definitely won’t go anywhere and put myself at risk, that’s why I’m at the holiday home today. It’s a bit miserable too as being here just highlights what I can’t do anymore. So I’ve had a day of wallowing in self pity and boring you poor folk on MN! 😂

I think it's difficult for everyone when someone can no longer do the things they used to do.

I think a firm chat with both DH and DS is needed - they need to understand the impact it will have on you if you keep forcing yourself to do things.

They shouldn't have made you feel bad for not wanting to join them, but at the same time they perhaps thought a holiday would be nice for you - so I can see both sides.

Sorry you are feeling grotty - I don't know where you are staying but are there any spas or places nearby that could send over a trained massage therapist for you? A massage might be nice for you and help loosen some of your sore/painful muscles. Depending on your level of mobility you could also call a cab and have them take you to a nice spa - float about in a hydrotherapy pool and get some nice treatments. And if you are in the mood to eat then track down some lovely restaurants and go have a tasting menu moment. I don't know if your condition permits you to drink booze, but Austria has great wine (and beer) so depending where you are there may be a vineyard/wine tasting etc etc near you.

It's a bummer you can't go walking and be as active as you were before. I do understand - I have had spine surgery and also have nerve damage in my neck and shoulder and it is utterly debilitating and gross when it's really kicking off - and I've had to just accept that I cannot do the things I normally would like to do...and I'm pretty young so too, so I've just had to think of new things to do that are fun and also preferably can reduce the muscle/nerve pain - so I get massages (which help enormously) and hydrotherapy (again, lovely because you are weightless but also get the benefit of warmer water at massages etc). Head/scalp massages can be particularly nice when I'm feeing a bit more cruddy than usual.

Will DH and DS not compromise and do some things you are capable of?

Ok, you're miles away from me then!
I think I know where you are if you are near Seefeld.
Have you been to Mittenwald? You could get the train there, have lunch and come back. It's very pretty, quick to get to from Seefeld and is a centre of violin making.

Thank you, I will suggest it when they get back. I’m generally ok with a gentle stroll around a town and someone else recommended it.

The internet says you are about 2 hrs 20 mins drive from Schloss Hellbrunn OP. Could you all drive there? Get your family to wheel you round the Wasserspiele (the internet says you can hire a wheelchair there), go on an English language tour. It's hilarious fun for all ages, getting squirted with water from unexpected directions as its elegant guests used to be, and might add some much needed joy to your family holiday. Very highly recommended. 😊

www.salzburg.info/en/sights/top10/hellbrunn-palace-trick-fountains

Think we’ll be having this chat tonight thanks to the many comments here.

Stick to your guns OP. It’s so important to pace yourself when things are tricky with one’s health. If you have been made to go on holiday there needs to be some consideration for you getting to enjoy your time there too. It is unreasonable for them to expect you to be climbing up the Alps!!!!

Holidays are for all of you - they can go off and hike but they also need to find a way to include you. You could catch a lift up and meet them for lunch, or have them meet you back in town afterwards for lunch if they start early.

Or they could sack off hiking for a few days and agree to do some low-level touristy stuff with you. There are so many options in Austria that don't involve hills and hiking - you could even go to Germany.

Bumping my post at 13.50 OP because we posted at the same time and there's a chance you'll miss it.

Your husband needs a reality check for future holidays so he doesn’t keep being selfish.

Is there anyway to salvage this holiday?

Are you in the right hotel for you? Do you have a lovely view, a balcony etc, a nice to
place to read etc?

I suggested Mittenwald earlier but you could also go to Innsbruck on the train, it's a really cool train journey actually. And then get the Stubaitalbahn (it's a tram) up the Stubai valley to Fulpmes. There's info about both of those here:

www.tyrol.com/travel-service/arrival/local-mobility/tirols-best-bus-train-tripsre

Your husband needs a reality check for future holidays so he doesn’t keep being selfish

He really does and he needs to wake up to the OP's breathing difficulties and they need to choose a holiday location that isn't 1180 metres above sea level because she's going to struggle with that even if she just sits around for most of the day.

This happened to me with long covid. The rest of the family do high level hill walking. We tried to stay in properties close to a town where I could sit in a cafe and read/people watch or have a two centre holiday so we’re all happy. The Austrian spas or larger hotels usually have a range of massage and other relaxing treatments so I’d be booking those pronto (I like a foot and leg or head massage).

Maybe suggest a scenic drive to some of the places suggested above. You could all have a nice lunch together then they could go for a walk whilst you relax in a cafe or take short walks or visit a museum. I quite enjoyed the time to myself to be honest.

Are you happy to use a wheelchair? Are there accessible walks in the area?

Your DH is clearly struggling to adapt to your disability. Yes you need to stand your ground but he needs to stop bullying you into doing things you are no longer able to.
As a family, we have had to adapt to my CFSME and reduced ability to walk/be active. If we go on holiday we choose somewhere with a good view I can enjoy even if I can't walk. I also take activities to keep me occupied if the rest of the family go out.
Good luck and take care!

Could you not go home earlier so you can rest properly?

Any life-changing disability affects the whole family, doesn't it, and adapting is more challenging and takes more time than one would think. We discovered that when DS became suddenly disabled. The trips and activities we used to enjoy needed to be replaced and modified and at first we were in denial about how much we needed to adapt as a family. This change in rhythm and pace was hard, especially as we wanted DS to feel as included as possible and we wanted to so badly have that sense of normalcy as a family again. It wasn't possible, of course, and DS needed to remind us of his own limits.

Do you think that this is where your DS and husband are at the moment?

Don’t be cross with yourself. And probably don’t be cross with your DH. (Easily said!)

This is just one more part of adapting to the changes your condition requires. You learn the physical things through trial and error and you learn the emotional and social aspects the same way. You need to let yourself recover physically after you’ve made mistakes about what you’re still capable of, and you need to let yourself recover emotionally when you make mistakes like this. Just accept, if possible find something nice to do now, and avoid in the future.

It’s clear it’s going to be hard work getting your DH to understand, generally calm persistence and consistency are the key. Also, possibly having him spend time with others with your condition may help. And, if you think he’d do it diligently, asking him to research some holidays/family activities suitable for people like you. Seeing how universal your different needs are now for people with your conditions can depersonalize it and make it seem less like you are rejecting the things you used to enjoy together. Especially if you can find other things. Ideally he’d understand because you told him, but on an emotional level we often don’t work quite like that.

I would treat the next few days to rest up.
Perhaps go out for lunch if you feel like it( use taxis to save your energy)
Pottering around shops, even a nice wash and blow dry
These are the tactics I use, even locally. Except I take drinks with me as so expensive to buy.
Don’t over explain to your DH. If he doesn’t get it now, he won’t.
Disabilities don’t have time off when you go on holiday.
Book assistance if at all possible for the airport.
I went to Florence, with my DS’s( who have lived with my CP too) and they couldn’t have done more.
I took my walker, which has suspension, very useful on the cobbles.

Try and see what’s available locally that you might be able to do. Also live in Austria, but we aren’t in that area.

Are you in a hotel or a private apartment?

Places like hotel spas as well as public pools often offer non pool options, even if you aren’t a staying guest. Would you like a massage or manicure maybe?

Some suggestions local ish that you could all maybe enjoy. Your family doesn’t have to hike all day daily!:

Boat trip on Achensee
Swarsofski crystal world
Gondolas - are there some open locally already? If so maybe go up one, you stay at hut to read and relax with coffee or short stroll at the top flat, meet family later.

I also suggest popping into the local tourist information. They are usually really helpful and will speak English. And they will be able to tell you of one off local events in town. Ie art classes, museum tours, food markets.

Is there a small independent cinema nearby? We have one and it shows English or German with English subtitles sometimes ( again the tourist information should be able to help you with this). Often interesting documentaries also not all big movies

Im sorry your dh is deaf to reality. Don't attempt any more walking. Instead take your book and visit the local cafes which do a wonderful line in exquitie cakes. Enjoy the soups and local cuisine. Use a taxi if need be. Hope you enjoy the rest of your holiday. Austraian lakes and mountains are beautiful. I've been over 30 times and even when totally physically incapacitated have had a wonderful time.

Is there any way you can meet them mid walk, by post-bus or mountain lift, so you can have lunch or coffee with the. or sit with a book while they hike. Thee is also a nice indoor/outdoor pool in Seefeld.

I’m with you too. ME/POTS here so I really get the restriction etc….
Its infuriating when your partner doesn’t see (or should I say doesn’t want to see?) that you can’t do what you used to do. I know it used to make me feel like burden and like I somehow am faking being that unwell. 😢😢

What worked has been a very strong talk with dh and boundaries, boundaries.
Yes them pushing you to do more than you can isn’t ok.
Im wondering if there isn’t part of your dh that is struggling with your (new) limitations. Esp if going for long walks was part of what you enjoyed doing together/bonding experiences. He might well need you to say ‘this is what we’re doing together’ if his involvement always ends up as ‘let’s go for a long walk’ so you have the opportunity to find new things to do together than you all enjoy.

Apart from that, for POTS, you can take ivabradine (that what I’m on) that lowers heart rate wo changing BP.
Also I’d have a look at MCAS. Treating that is also sorting out (some if) the HR issue and it’s quite common to see EDS+POTS+MCAS together. It’s my (private) cardiologist who sorted out medication for me. Might be harder through the NHS but really worth look at.