Can I expect DH to do better than that?

[CovidSmart]

This year was a special birthday and Dh decided that my treat for it would be 3 days break in a yurt about 1 hour away from home. He booked in January (My b'day) for the 12th April onwards (Luckier than that on dates, you can't do. The plan to get out of lockdown wasn't set up yet.)

Now the background:
I have a chronic illness which means mobility issues. I can only walk so far before I get exhausted and in pain. More than 5000steps in the day and I'm done. Or I need many breaks in between. On a bench rather than a cold stone/ground.
I am also cold very easily and cold is making all my symptoms worse, including the pain.
I need to follow a specific diet (otherwise again symptoms are flaring up) which means more thinking is needed if we decide to have a day out. I can't just go and grab something at a cafe because it's basically very hit and miss on whether I will something suitable.
Going 'walking' (even in a nice flat garden) is not my idea of fun. I did it many times with the dcs. But I'd rather be in a town, looking at architecture, visiting quirky shops/places (I'd say museums etc too but we are not quite there yet lockdown wise)

Instead:
Those 3 days started the day before with me spending too much time cooking for us all so I had something to eat when away. More work for me. Plus I got tired from the standing/cooking even before we left.

Then we went on to 'visit' attractions we've been to many many times as they are only 1 hour away. With DH looking surprised it was too much and having this sheepish look on his face 'Oh I think that was too much wasn't it?'
It was cold (there was still snow on the ground when we arrived) cue for me waking up during the night in pain (and freezing)

Going camping in April (in a yurt or not) is always a gamble at the best of times. We did nothing special/different.

Now is that really too much to ask for DH to actually think ahead and KNOW I was likely to struggle? And maybe to find something a bit better suited to me, my tastes and abilities rather than whatever was the easiest (or suited HIM best - he loves the outdoors)

He sounds very self absorbed.

What joy does he bring to your life?

OP please don’t feel guilty for being disabled. It’s not your fault.
Your husband sounds selfish and lacking in empathy. You should expect more.
When planning an activity I , as do most people automatically consider whether the people involved will enjoy it. If I don’t know whether they will then I’m not close to them in the first place!
Some people are just very self absorbed.
You’re not getting anything out of this...whether you consider it worth putting up with is up to you
But please please don’t blame yourself saying you’re a wet blanket etc. Your family should support you. That’s why you’re a family. Once that consideration’s gone nothing remains.

I felt fed up and quite low when we came back from those 3 days because basically it felt like a struggle throughout. Struggle to walk, struggle to cope with the temperature and struggle because I WANTED to enjoy 3 days away that should have been a great time. After all, this was the first time in months we have been able to go out/away!

And I agree with you @TheLastLotus, I feel somehow guilty or at least 'not good enough' for being ill. I certainly feel the fact things haven't gone well (at least for me) is my responsibility.

@Parkperson
You appear so, so fed up with your husband.
I am not fed up with DH as a person. He is actually trying in his own ways. And he certainly is trying to be careful about my limitations.
But my reality is that, despite him trying and me being as explicit as I can, it feels like most of our outings are a plain struggle for me. And I am fed up of that.

The reality is I am fed to be in pain, unable to go up a couple of stairs wo a massive effort each time I am going out with them. I am fed of the constant struggle, the constant assessment
Is it going to be too much?
How much more can I walk now?
How much are we supposed to carry on for?
If I ask everyone to stop now, am I spoiling it for everyone?
What's in front of me? Stairs... Arrgg... is there a ramp, can I avoid them? If I can't, what's the impact for the rest of the walk/outing?

Dh just doesn't get it. He can SEE I'm struggling. He KNOWS it's going to end up with me unable to put one foot in front of the other. And he feels CRAP about it (and I suspect somehow guilty too). But he doesn't seem to be able to make the next steps, which to accept it's not possible for us to the same things than we did years ago, even when it's a watered down version of it (which it was - our honeymoon incl 4 days walking in autonomy in Scotland).

@tenlittlecygnets, I am sorry you feel I have singled you out and that I am picking at you. This wasn't my intention.

I am not picking at anyone in particular. But if someone, whoever it is, is saying something so different than what I intended to convey, I am wondering why this is the case.

I appreciate you've taken the time to explain your pov. It's an interesting idea that I am the person who is lacking respect in this case. And also an important thing for me because respect is probably one of the most important thing for me in a relationhsip (along with trust).
I'll have to think about that.

Oh, I don't think your h is any more respectful - he sounds thoughtless at best, unkind at worst sometimes. But I think it's a tricky situation for you all, for various reasons. I wish you luck with resolving it.

@tenlittlecygnets, sorry to ask for clarification.
Do you mean lacking respect as in 'not being respectful/acting rspectfully towards the other person'
OR lacking respect as in 'having lost respect for the other person'?

OP, can I ask, are you treating the suggestion that you have lost respect as a value judgment, or a statement of fact?

Because in all honesty if I had a disability that meant I couldn’t tolerate cold, or walk far (and actually I DO have one of the two) I would really fail to have much respect for a person who booked me a supposed treat involving sleeping in the cold and walking.

Flip it on its head, why one earth would ANYONE respect your DH behaviour ? It’s either callous or dangerously incompetent.

My DH isn’t perfect by any means, and my issues are no way near as significant as yours, but he would always check, before, during and after how well I was holding up. And if I’m not. Home we go. No hard feelings.

We both have very different ideas of a fun day out. But on days when it’s my choice. He sorts himself out and joins in with good, if mildly grudging grace.

I think your relationship with DH is a bigger issue to untangle, but could I ask (I know mobility scooters were mentioned) if you have considered a wheelchair? A huge amount of your struggles outside the house (bring limited to number of steps, needing breaks, being in pain trying to stand up etc) may be helped with this.

Regardless of whether or not that improves your relationship with your DH, it may be of benefit to you? I say this as an initially very reluctant wheelchair user (now I don't have a choice!) I resisted it and resisted it but bloody hell, it makes my life so much easier as well as everyone else's. Especially if you aren't confined to using it 100% of the time, you can always walk behind it and hold onto it for periods if you want to walk (and then you can put your shopping in it )

"Giving in" to a chair changed my life. My DD is also a professional sports player so I had the "I can't physically go watch her compete but I want too so badly" feelings and a wheelchair helped enormously. Even if there is muddy ground, if you have some limited mobility/lightweight folding chair/someone with you it's so much easier to access things.

You (in general sense not you specifically) are so constrained with mobility problems and pain, literally everything can be a struggle - a wheelchair for me was actually very freeing and gave me more independence and freedom. I know it can seem daunting but it may be worth considering? For you, not for your DH or to improve your relationship - but just for you. To make your life smoother and easier.

(It also helped reframe my relationships with my DCs too but I have probably gone on at enough length!)

Over the years you have colluded with your DH into "pretending" everything is ok. You don't seem to have spoken out and said - I can't do x anymore I need you and the DC to compromise.

I understand you don't want your disability to impact on your DC however they have trundled along oblivious to your true feelings and also seemingly oblivious to the fact that your feelings as well physical issues need consideration.

I think your DH is selfish and inconsiderate to book a trip he wanted to do, that he gave you and your needs and likes no thought. I do wonder though if you have always been a bit of a martyr and never spoken out when he has let you down or disappointed you.

Why should you feel the need to be grateful for a completely inappropriate gift that you can't say to your husband- that isn't going to be a nice trip for me?

Yikes OP, you sound like hard work I'm afraid. Lots of people with disabilities manage to get out and about and lead very active lives - people have suggested ways for you to improve your mobility and your response was "why should I have to do that? He should be the one changing"......I think that pretty much sums up why you're at where you are. You're the one missing out, hence why you might want to consider actual solutions. Whilst it might not be the solution to every activity it would mean that your mobility wouldn't have to be a barrier to it all.

My mum has cerebral palsy. I grew up as her carer as my DP divorced and I was the eldest. She was always there doing stuff with us, even when she couldn't take part. And because of her enthusiasm and determination to be part of it, she was. My DM wouldn't have been able to do half the things you've described doing, albeit you were in pain. She just physically couldn't have done as her disability is extremely restrictive. She can't walk unaided. But she always came along - her and my DF stayed on very good terms after the divorce so we still went out as a family. Like your DH, my DF was a very outdoorsy/sporty person which my DM absolutely couldn't participate in. She couldn't even go on theme park rides with us, or even the swings, because of her mobility issues. But she always came with us and held the coats and loved being part of it. We have lots of fun memories of her being there and so does she.

It also sounds like your condition fluctuates quite significantly because you said you don't know in advance how you're going to be that day and whether you can manage something or not. This isn't your fault but people tend to find this difficult. I think it's much more difficult for them to get a grip on what you can/can't do if it's very variable. Is there a chance that DH doesn't fully believe that you can't do things? I'm thinking of conditions such as CFS and fibro, for example, where I know that can be an issue.

Don't think I'm unsympathetic to living a life with a chronic disability. I have two disabled DC, I cared for my DM and in his latter years, I was also DF's carer. I know how exhausting and draining it can be living with a disability. But it's up to you really if you want to make changes that will allow you to participate more. Don't choose to be a bystander in your own life. Stand up to DH, be more vocal about things you don't want to do and consider what mobility aids would help you to get out more.

Finally, your DH sounds pretty thoughtless and selfish too. If he's so dismissive and uncaring of your needs and wellbeing, is this someone you want to grow old with?

I agree on the hard work element......what would you have wanted to do....because all you've talked about is what you don't want to do?

@ivfbeenbusy
In my OP
But I'd rather be in a town, looking at architecture, visiting quirky shops/places (I'd say museums etc too but we are not quite there yet lockdown wise)

To address a few point:

• I agree I have colluded with him in considering everything was fine. Because 1- I have struggled a hell of a lot to accept my own limitations and 2- because I wanted to do everything so that my dcs wouldn't grow up restricted in what they could do. The dcs are now older teens and I have been feeling more able to to say 'No sorry but can't do that' on a regular basis. But I agree it's still there.

• I am not gloomy and wallowing in self pity. I am very 'determined to be part of my dcs' life' and I am, in my own ways.

Eg: next WE I am taking dc1 to do a race about 1.5 hours away. I know it's somethingh he really wants to do (but not the shared hobby that he has with DH and dc2). It will give us twice 2 hours in the car to chat etc...

• But I am also very careful not to push myself too much (or trying to!). My own dcs have commented many times than I often over estimate how much I can do (my own issue there). I am trying to address that. Plus there is a part of fear there too.

Eg I have crashed the car due to my own exhaustion so until recently I have been very weary of driving more than 1.5 hour. Finding the middle ground between doing as much as I can/the right way to be involved/but not too much/being safe has been tricky and still is.

• Is there a chance that DH doesn't fully believe that you can't do things?

I think that for a long time, DH didn't believe it and thought I was just lazy. He denies it but for many years, that's exactely what his behaviour said. (which didn't help me accepting my limitations and get over the feeling that 'I ought to just get on with it'...). He is making similar comments about his dad btw - eg that he should be more active etc... His dad is terminaly ill with cancer . I think that the expression 'dangerously incompetent' is probably what describes his behaviour best because he just puts his head in the sand and denies any issues. I've had to tell DH dor example 'Yes I'd love to go cannyoning but I am not going to do that because that would be dangerous' whilst we were on holiday....

• re a wheelchair... On paper I totally agree. But it feels like I could spend several sessions with a counsellor entangling why it's a YES and a NO at the same time... I'm not going to bore you with that

Sorry that was much longer than I anticipated!!

I think illness/physical disability changes a relationship in ways that are very complex. My ex was actually really good about my illness when I was unwell for a couple of years, but there was also the very negative side-effect that I felt my deteriorating health meant it was almost impossible to leave him as I couldn’t earn enough to support myself and the children.

It sounds like your husband has a problem with sick people and this is now affecting your relationship in a way that it wouldn’t, had you remained healthy. In addition it sounds from some of what you say, that you have a fairly classically selfish husband and while you were fully able-bodied you fitted in around him and now you can’t.

Are you in a position where leaving is an option? The current situation is obviously making you unhappy. You said in an earlier post that you’d said to your husband that you might be happier apart so you could have separate weekends with the children, so that is obviously something you’ve considered.

If leaving isn’t an option, would some sort of mediation help? Perhaps you could have “you with the children” weekends and “him with the children” weekends without separating?

Either way, you have my sympathy. Chronic illness and selfish husband combinations have the potential to make life pretty miserable. I hope you find a way forward.

It sounds like you need to be more vocal with your DH and object to his criticism of he Dad and any implied of you. Basically call him out on it every time!! When he says his Dad needs to be more active tell him he is being ridiculous and he is doing amazing to do as much as he does and how he is pushing himself.

What's your DH like when he is unwell? Man flu with the dressing gown of down or does he just carry on?

You need to be your own advocate. I think your marriage long dynamic is that you either joined in his hobbies or spent time apart. Which sadly means he is just very selfish and he doesn't want to accommodate your wants or your needs.

That sounds very judgemental but it's worth you thinking about and actually he needs to compromise and do things as a couple and as a family that you enjoy willingly without any sulking/spoiling it.

Coming to terms with your own limitations sucks

I think illness/physical disability changes a relationship in ways that are very complex. My ex was actually really good about my illness when I was unwell for a couple of years, but there was also the very negative side-effect that I felt my deteriorating health meant it was almost impossible to leave him as I couldn’t earn enough to support myself and the children.

I can fully relate to that . At some point, I very much felt that if I had wanted to separate, I wouldn’t have been able to because I wouldn’t have been able to look after the dcs (and they would have ended up as my carer, which, rightly or wrongly, I refused to see happening). That’s even before talking about potential earnings.

Random, Dh is rarely ill.

When he has a cold/fever, his answer is to go for a run

When he fell over and opened his knee (deep enough to see bone, 2 trips to theater and a week in hosp), he was told off by nurses for taking the deambulator for a walk, behind him. He was supposed to stay put for 2 weeks and was back at work after one etc...

That attitude to illness (be strong and just get on with it unless you are dying - and even then...) runs very deep within his family.

His own values explain a lot about his (awful) attitude to your ill Heath and have probably influenced you to be stoic and not being vocal with your NEEDS.

You need to be saying lots of "I'm not you and my body/condition doesn't work like that. Just because your experience isn't the same doesn't mean you are right"

Basically start standing up for yourself.

Why haven't you told him that you are hurt and disappointed that he didn't consider your needs in planning a trip? Rarely is it not cold overnight camping in the UK! He could have planned that trip at least for the summer months, or again planned a city trip that you would have enjoyed for the summer when life should be more open.

Think about what you can't talk to him about how he planned his preferred trip when it was supposed to be a gift that you would enjoy?

It would be like DH me to Utrecht when there is his hobby competition there because I love the Netherlands but it would be me amusing myself whilst he was busy 7 hours a day and then he would be too knackered to do anything in the evening! I would just tell him he was being ridiculous.

"My own dcs have commented many times than I often over estimate how much I can do (my own issue there). I am trying to address that"

Isn't that the problem you have with your DH - who has been doing exactly the same?

You are both "guilty" (not meant that harshly!) of perhaps denying or minimising your condition. Do you think if you do get some counselling to unpick your own issues around this it may help your relationship (but it could be beyond repair due to other issues, no one here can judge).

Recognising you are denying yourself something that may benefit you (ie wheelchair, and I know this feeling as I have lived myself!) is a good step nearer acceptance and thereby improving your life in terms of practicality and mental health.

PS I would fucking love a holiday in a yurt - so the knowledge I couldn't easily actually do it is also upsetting. It's just a shit situation generally having disabilities or being chronically ill/in pain etc. It's life changing if you have previously been healthy and does take a lot of work to come to terms with.

If you look into how you could help to accept your situation and thereby improve it, it may help your relationship or help you clarify that separation is the best option. Improving the situation - I mean things like counselling and feeling able to use a chair if it would help you, and not being afraid to really push for any meds or treatment with GPS etc (again, I'm projecting my own situation )

Sorry for lots of posts!

Whet would have been your ideal treat ?
Tell husband next year exactly what you want