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! 😣

Sending solidarity.

I used to be a ten to fifteen miles a day hill walker , gym, Pilates the works.

Then ill health hit and even getting out of bed and downstairs is now exhausting. I live alone but have noticed a lot of people just seem to be in complete denial. Maybe because I try to be upbeat and positive on the phone and on text. Yet when I voice my concerns some people say the weirdest and most unhelpful things. Others have been fab.

I have no diagnosis yet but really feel for you. Really sorry the spa isn't an option

Thats a protection mechanism @words.

Esp with invisible illnesses/disability, accepting that someone you know can suddenly get that ill is accepting that it might happen to YOU.
Add to that the whole discourse of disabled people being lazy, a burden etc…. branded around l
And ableist discourse telling you you’re only worth what you can achieve/do, abd you have the perfect recipe to do your utmost to ignore you’re only one surgery/accident/ilness away from being g part of the 20%. The 20% of the population that is disabled.

It’s very hard to fight against, even when you’re the one disabled!
Or when it’s your partner/parent/child.

Thanks so much for all the suggestions (& sympathy), I really appreciate it!

I can walk ok, just not uphill and certainly not at the lengths we use to do. As others who have similar conditions have noted, it’s the level of adjustment and acceptance of that. I think I myself have come to terms with it, but getting the family to adjust is so much harder as physically I look ok, but some days feel dreadful. Obviously they can’t feel how I feel so don’t realise. I hate having to keep flagging it and when I suggested I sit this holiday out, they pushed hard for me to go and I needed to be more open & honest about my health issues and stricter on boundaries. I just feel like I’m a health bore these days and I think my husband is unrealistically optimistic that I’ll just wake up better one day. I have been offered further nerve surgery in my neck to try and fix the nerve damage, but it’s risky, probably won’t work, quite long and intrusive surgery with a long recovery, and other Drs/physios etc have cautioned against it due to hEDS (hereditary connective tissue disorder) and now POTS. Also recovery from the last surgery has taken forever. Anyway, this time next week I’ll be home so I’ll focus on that. TY x

Yes @BlueTitShark . I agrée re the protection mechanism.

After months of faffing as my symptoms are widespread but vague, I was put on a fast track lets rule out cancer pathway. That has now happened and no cancer found which is of course great but still leaves me very compromised with no diagnosis.

Some comments

Fabulous news when are you back at work?
Fight!
Great glad it is nothing serious

Sorry to dérail OP.

I agree. Even when results come back normal, it doesn’t take away the fact you’re still poorly, feel dreadful and can’t do things. I had a very large growth taken out of my neck which had gone under my collarbone into my chest. Obviously I’m so very relieved & grateful it was found to be benign but my health has been left compromised, particularly by the nerve damage which was unavoidable and maybe complicated by the hEDS. I also had a full cardio check which diagnosed the POTS and am again thankful my heart itself seems generally ok. But the limitations on what you can do and how you feel are still there and because it’s an invisible illness, you end up feeling either not believed, a whinging hypochondriac or a total burden. I never really thought I’d be this person.

It maybe worth looking into https://www.makevisible.com/ if you have pots, as it demonstrates the impact of activity on you.

Me too @Stuckonholidayagain .

You have been through some awful and traumatic procedures. Your cortisol must be through the roof.

I have become a health bore in order to advocate for myself. I worry people will think I am a hypochondriac looking for attention .

This sounds shit, OP. The stuffed rubber glove has been pretty unsupportive. Is there anything you can do by yourself you don't get time for at home that you might enjoy? As you say, netflix binge or kindle series?

Or maybe photos of the mountains and flowers?

Can you get them to go on a walk where you can go up on a chair lift and meet them at a restaurant at the top ?

we used to laugh at ourselves as all the Europeans would walk up, and some would chair down. But our dc weren’t great walkers, so we would chair up, and sometimes just go a short walk up too then chair back down too !

I know it’s hardest for you so please don’t take this the wrong way - but for your dh it’s clearly a lot to get his head around - his life, his future has also been turned upside down - which is why he is being so stupid

at sone point you need to talk long about your future - how he will need to do some things on his own or with others , and also what you might now see as your future so he can fit himself in the picture

Just leaving this here

It’s a shame your husband lacks understanding, but with a bit of forward planning, hopefully future holidays could be better.

You need to find somewhere with more of a variety of activities to do. Perhaps cities with walking tracks nearby, so every second day you do something like a museum with the family, then you enjoy a quiet day while they go off walking.

I don’t know if this is a crazy suggestion, but are you able to ride a bike? Maybe you could rent an electric bike and they could hire regular bikes and you could all ride somewhere next time.

I’m using the free app already and definitely getting the subscription when home. Even the free app has been very helpful. I do think I am a boom or bust in relation to my symptoms and overdo it on better days to make up for bad days. Then I end up crashing the next day. Plus pacing seems to help enormously with managing symptoms.

@Mumofoneandone i second Visible!!

It was originally developed for people with ME and LC but actually helps a lot of people with other diagnosis.
Great to not overdoing things and following what helpful/not helpful, whether it’s medication, supplements or lifestyle adjustment (let say like cooking sat down vs standing up)

If you can get in to Seefeld OK, then I would suggest the train to Mittenwald, which is very charming and has a little violin museum which is surprisingly interesting; and the train to Innsbruck. The train goes to Garmisch-Partenkirchen too, but that's a bit more sprawly to walk around.

Next year I would suggest you plan where to go carefully so there are easy things you can do and your DH can go off walking.

Switzerland is pricy but has easy bus and train options without much walking, plus great walks for your DH.

Or Merano is worth a look in the South Tyrol.

This seems like what you could do. Use it as a holiday, rest all day, read a book, send some emails. And when they come back go out for dinner or they can cook and show you photos of their day out, at least you are spending time with them.

I’m going away with my (adult ) this summer. Just a 2~3 days. In the Alps too.

They’re both very keen outdoorsy people. One does fell racing etc… the other has done 10 days walks in autonomy in the Alps. That sets the picture.

The brief has been: we’re going together. That means we’re doing stuff together. Here are things we can do together (list xyz etc…). If you want to go running at the end of the day etc… no issue. But otherwise the idea is to spend time together. Are you in?

They both said Yes so that’s what we’re doing.

But I’ve stopped doing anything that means I need to push myself. Nowadays I’m putting myself and my health first. It has led to hard conversations with do plainly stating ‘I’m not doing xyz. I’m not putting my health in jeopardy for that!’.
The reality, as sad as it is, is that you can’t expect people to know how you’re feeling, what you can do. And you can’t expect people to respect your boundaries either. I think probably because those boundaries are unusual so don’t come automatically?

I've also had to accept that helps are a godsend. I’m now using a wheelchair and this has given me so much independence! Something to think about too maybe? Not as an everyday thing if you dint need it but as a way to do longer (walking/wheeling) trips when you want to?

Its a learning curve on both sides that’s for sure.

Is DH and DS actually not aware of your limiting health conditions because you have down played them? Have they seen your health records and letters from doctors and surgeon etc? Why did you go on the holiday in the first place? Didn't you tell them you would not be able to do any hill walking before you went?
You need to tell them your life has been irreversibly changed by your health and you hope DH will not have expense of arranging your transport home on stretcher by private plane.

Going forwards I think I’ll just strictly limit myself to UK short breaks in future. It means I can take helpful things with me in the car. Recent UK short breaks we’ve done have worked really well, plus even diet can trigger symptoms so that’s another stress when abroad. Also getting luggage through airports etc is just all too much now.

Luckily I am still able bodied atm, just quite limited in how much I can do before the fatigue & symptoms kick in. Plus the breathing issue is a pain. To be fair I don’t mind giving up travelling abroad anyway as I’ve travelled so much in the past and even worked as cabin crew for BA for a number of years before I was married. Have just relayed this all to them on their return from their hike, and said I don’t want them to miss out and am happy for them to do activity breaks together but without me. They seemed to accept it so fingers crossed.

From here on in, I’ll be standing my ground. Think I have been far too soft.

Would you be up to a day in innsbruck? Just bimbling around shops/stopping in cafes. Send the others off for a hike or to the alpine zoo - it's fab, but some steep slopes.

Or do you enjoy painting/drawing/any sort of craft? If so, send the others to get some supplies in from your nearest town, set yourself up somewhere with a beautiful view and put Audible or Netflix on and have a lovely time.

No advice OP but just to say I can't believe your husband booked a hiking holiday in the fucking Alps. I mean, it's almost as if he thought of the most unsuitable thing on earth. I'm surprised he didn't go all in and book the Himalayas complete with sherpas.

Deleted as replied to wrong post!