getting that bad not bed
Nicola Sturgeons husband pleads guilty.
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(65 Posts)Some people may remember I've had mobility issues for some time and have ended up needing a powerchair at home. I already had a mobility scooter for going out. I'm gradually now getting a bit of routine back in the house and achieving the odd thing. There are still issues - some corners are too tight. I've felt quite upbeat about achieving things and I enjoy being out on my scooter as it's freedom. But we still don't go out that much and it's always hassle planning and organising and checking places to go are accessible.
We haven't had much of a social life for a long time, although kept in text contact with various people but everyone's lives seemed to change after the pandemic. I invited some people we know round for a meal and the response was - come here as we have a social thing on x date. So this was the first time I had to negotiate going to someone else's house rather than public places and bigger spaces. I had already explained I used a powerchair now - we knew that wouldn;t work in someone else's house and a fairly large gathering. So I had to work out a plan. It was only a few steps from the door to the main room and I thought I could manage that as a one off, if there was a high enough chair I could sit on just inside the room. So I texted to politely ask if that would be possible in advance. No reply. I thought that was odd but thought they were maybe busy.
In hindsight I don't think I was expected to go at all - just my OH. His friends really. And it was "assumed" that I couldn';t possibly take a powerchair there and so probably wouldn;t be coming.
I had the most horrible experience all evening. At the door I had to wait until I could find out where I could sit down. The host came over to my partner, gushing, big hugs, lots of sympathy (he has also been unwell recently but better now), big thanks for the gifts (which were MY thoughts to take!). I was completely ignored. No eye contact, no approaching me - not even a hello. That moment was really horrible. I was completely blanked and invisible, standing there alone. I started to hobble forwards a bit, holding onto the wall and the host just called over there's a stool just inside the door. So my message had got through but I had that anxiety that maybe it hadn';t been seen as no response. That was a relief, I could sit down. And there I was stuck for the rest of the night. Not one single person spoke to me for over an hour and a half. The room was crowded - I didn't know many people. The host walked past me a few times and didn't say a word or stop for a chat. As it was so crowded OH had to go in another room to sit down. And didn't come back for ages. Eventually I had to ask someone to go and get him and ask him to get me a drink.
I sat there thinking. I'm still me but what is going on here - I was completely blanked. Was I supposed to have taken a hint and not turned up. It was hurful and humiliating. I might as well have been invisible. Eventually I butted into a conversation a couple of other people were having nearby as it was a topic I knew about and actually had some conversation. And then we had to leave.
It was such a bad experience I don't think I ever want to go to someone else's home again. And I think I need to make new friends. And leave the old ones behind. I'm very upset.
I have about got over the stress of it but had the most awful week in pain not being able to do a thing and that is likely to continue for another few weeks at least. Another 6 weeks in bed - I try and avoid it getting that bed obviously and need to live within my limitations. It's always scary in case "this time" it doesn't improve with rest.
I suppose also that it's that I'm not permanently in a wheelchair (yet!) skews peoples thinking, including my own sometimes. But apart from a few steps between chair and wheelchair or bedroom and stairlift, I can't really walk - but have worked things around my own environment and this was a different house.
Hindsight is that we absolutely should have taken the wheelchair in, and used it. But if someone I rely on to get it disappears...... I did have my folding mobility scooter there - got to the house on that and then it was folded and lifted inside), but I couldn't bring myself to go up someone else's hallway on a mobility scooter without a discussion first, and I couldn't have the discussion because I was ignored!
I have said to OH if we are ever ever in that situation again, please please check I have everything needed before any social convention - that can wait.
gentleshores
And now he's upset me again. Am I being unreasonable here? Because I'm now stuck in bed in pain and hoping that by resting up I will manage Christmas Day, I decided to just accept I am not going to be marzipanning the Christmas cake I made, and I said to OH yesterday, we'll just have the cake without it being decorated - he and grandson only peel the marzipan off anyway and the important thing is a nice piece of home made Christmas cake with good ingredients. Today he suddenly started pestering me about marzipanning the Christmas cake and decorating it. I said I already said I'm not up to it and it's the least of my worries. He said he meant he could do it. I said the point of it was not that it needed doing, but it was something for me to look forward to doing, as I have done for most of the last 17 years, and because it's good for me to do the odd thing like that with my restrictions and feel I've achieved something. Somebody doing it for me just feels worse than not doing it at all. He still didn't stop and said - well just so it looks Christmassy. Christmassy! Aargh. I said we have a Christmas tree, that looks Christmassy - I'm in pain, I have had to cancel everything and it's just a cake - there are other Christmassy things. So ok I'm maybe still feeling a bit sensitive, and maybe some people would think that is helpful of him but I don't want him doing my favourite jobs. He's usually the one who says - just buy a Christmas cake. And nobody really eats much of it some years! So I'm upset again and I'm trying to relax and keep positive. He thinks a Christmassy looking Christmas cake is more important than me? That's what it feels like - also this feeling that he is making me feel not needed and irrelevant. It's my job! I invented our style of Christmas decoration. I wanted to do it myself or not at all! Is that unreasonable? I've been asking him to wrap presents - now that would be helpful! But he keeps forgetting. Sorry to whinge. Somehow I've got upset over the Christmas cake I baked now. It was my little project. I used to make one every year, but the last few years we bought one and not only was it very expensive, it wasn't as good. So my project this year, because I am so restricted - was to make my christmas cake - and it was a joint effort, he helped me with some of the chopping etc I couldn't do.
It feels like someone is stealing my recipes! Maybe I should let him do it but it feels like giving up what little bit of autonomy I have left.
Ma
Maybe 'he' does not like Christmassy stuff and therefore understandably takes no interest in it.
I speak from experience----I minimise the Xmas pressures as much as I can and would not even consider a special Xmas cake., or even a bird or a joint. My relations are much the same as me, fortunately.
I have a lot of time for religious Xmas traditions despite I'm atheist, But I am good at resisting the other traditions of over eating and over spending.
Your hosts were bad at hosting. I hope you did not have to stay there long before deciding you had enough of their scratchy behaviour.
There may have been some congenial people among the guests, but the place seems to have been overcrowded and you can't have met everyone present due to overcrowding.
It is a host's foremost duty to introduce people to people. But some hosts do not know this simple fact.
Sparklefizz
I am so sad, sorry and also angry to read about your experience gentleshores. The ideal thing would have been for your husband to do the preparation for you as these are his friends.
When I had a get-together one year, one of my neighbours is permanently in a wheelchair. His wife came round the day before to measure up to see if his chair would go through our front door (it wouldn't), so we looked at my side access and the patio doors, and worked out how we could get him into the house.
On the evening, she brought ramps with her and he was able to come into the house in his own comfortable wheelchair and enjoy the evening with the rest of us.
If there's another occasion in someone else's house (not necessarily these horrible thoughtless "friends"), perhaps your husband could do the prep work beforehand to ensure that you are comfortable and can manage. That would be the considerate thing to do.
Thank you so much. We did take a mini threshold ramp. But yes it was the conversation needed with the "friends" before going and that threw me to not have that. That conversation should have happened.
I am so sad, sorry and also angry to read about your experience gentleshores. The ideal thing would have been for your husband to do the preparation for you as these are his friends.
When I had a get-together one year, one of my neighbours is permanently in a wheelchair. His wife came round the day before to measure up to see if his chair would go through our front door (it wouldn't), so we looked at my side access and the patio doors, and worked out how we could get him into the house.
On the evening, she brought ramps with her and he was able to come into the house in his own comfortable wheelchair and enjoy the evening with the rest of us.
If there's another occasion in someone else's house (not necessarily these horrible thoughtless "friends"), perhaps your husband could do the prep work beforehand to ensure that you are comfortable and can manage. That would be the considerate thing to do.
It's resolved now - the cake is not being marzipanned - it's too late, there are too many other things to do (and pace is slow) and I had already decided that two days ago. I don't have time to do a cookery class. You maybe need to read the start of the thread to see why I was upset.
As for pain relief - I wish. Anything strong enough would have me addicted. Paracetamol doesn't touch it. Six weeks of not standing or walking usually gets it to subside, and then I have to live within my limitations again and also have a lot more muscle wastage by then.
You need to get better pain medication- having to deal with pain makes me grumpy but I always reach for the paracetomol in the first instance.
To say you don't care about the cake you do seem to be quite focussed on it, and it seems DH was trying to relieve you of that burden-so why not let him?
I hate present wrapping so delegating that job would be bliss for me- can't you get someone else to help?
I would let DH do the cake and then ask for more help with the wrapping.
I think I have asked before if you have wider family who may be able to help?
You say you are struggling with not being necessary in the kitchen anymore- I think some changes and adjustments have to be made but these do take time. It isn't easy after a lifetime of kitchen things, to feel as if it's no longer your space, I do understand that but maybe DH has always longed to be in there? Give him a chance to be happy too.
I really do hope you try to relax and enjoy Christmas- it isn't always about everything going like clockwork. Often it is messy and frustrating but that's life... it will all be over soon anyway.
I don't want someone feeling sorry for me - I want someone to agree with me! :-) That yes my current needs are more important than marzipanning a Christmas cake. Which is how it feels. And I know I'm being sensitive but that's because I'm in pain.
I was actually feeling a bit happier after the big setback - I had been doing retail therapy online and ordered a new top to wear on Christmas day and had already worked everything out re food. So just wanted to relax a bit.
HelterSkelter1
Can you wrap some presents in bed gentleshores if he gave you the paper and sellotape?
I haven't read in other posts what condition you have. DD1 has ME and chronic fatigue so I am aware how difficult life is with mobility restrictions.
It has been an achievement to make the cake. I expect his marzipanning and icing of it wouldn't be as good as yours, but to me it sounds like he is trying to help or just share the christmas preparations although it may not seem like that to you. Your life sounds hard and you are not happy. I have every sympathy.
Thank you. Yes I can wrap some Christmas presents in bed if they are fetched over to me. I thought it would be nice to do some together. I did say to him it got me stressed that he kept going on about marzipanning the Christmas cake and tried to explain I'm trying to focus on getting out on Christmas day and prioritising and it will only upset me not being able to go and do it myself when I'd just accepted it would do and there were more important things. I think I got through. I suppose I struggle a bit with the idea that he doesn't find me necessary in the kitchen any more.
Can you wrap some presents in bed gentleshores if he gave you the paper and sellotape?
I haven't read in other posts what condition you have. DD1 has ME and chronic fatigue so I am aware how difficult life is with mobility restrictions.
It has been an achievement to make the cake. I expect his marzipanning and icing of it wouldn't be as good as yours, but to me it sounds like he is trying to help or just share the christmas preparations although it may not seem like that to you. Your life sounds hard and you are not happy. I have every sympathy.
And now he's upset me again. Am I being unreasonable here? Because I'm now stuck in bed in pain and hoping that by resting up I will manage Christmas Day, I decided to just accept I am not going to be marzipanning the Christmas cake I made, and I said to OH yesterday, we'll just have the cake without it being decorated - he and grandson only peel the marzipan off anyway and the important thing is a nice piece of home made Christmas cake with good ingredients. Today he suddenly started pestering me about marzipanning the Christmas cake and decorating it. I said I already said I'm not up to it and it's the least of my worries. He said he meant he could do it. I said the point of it was not that it needed doing, but it was something for me to look forward to doing, as I have done for most of the last 17 years, and because it's good for me to do the odd thing like that with my restrictions and feel I've achieved something. Somebody doing it for me just feels worse than not doing it at all. He still didn't stop and said - well just so it looks Christmassy. Christmassy! Aargh. I said we have a Christmas tree, that looks Christmassy - I'm in pain, I have had to cancel everything and it's just a cake - there are other Christmassy things. So ok I'm maybe still feeling a bit sensitive, and maybe some people would think that is helpful of him but I don't want him doing my favourite jobs. He's usually the one who says - just buy a Christmas cake. And nobody really eats much of it some years! So I'm upset again and I'm trying to relax and keep positive. He thinks a Christmassy looking Christmas cake is more important than me? That's what it feels like - also this feeling that he is making me feel not needed and irrelevant. It's my job! I invented our style of Christmas decoration. I wanted to do it myself or not at all! Is that unreasonable? I've been asking him to wrap presents - now that would be helpful! But he keeps forgetting. Sorry to whinge. Somehow I've got upset over the Christmas cake I baked now. It was my little project. I used to make one every year, but the last few years we bought one and not only was it very expensive, it wasn't as good. So my project this year, because I am so restricted - was to make my christmas cake - and it was a joint effort, he helped me with some of the chopping etc I couldn't do.
It feels like someone is stealing my recipes! Maybe I should let him do it but it feels like giving up what little bit of autonomy I have left.
Edit sorry the burning pain is in my knees after going to the loo (means walking a few feet) not elsewhere!
keepingquiet
Why do you say Christmas is ruined?
You seem like a very determined person and I do hope you get some positivity back and not allow these horrible people to ruin your Christmas.
Some people just can't handlechange but you seem to have grasped it head on and good for you.
Maybe you can start and host things in your own home with nicer people and send OH out for the day to sulk because he sounds pretty horrible too and you deserve to be treated better.
Please don't allow any of them to spoil your Christmas, unless you really want it to and then I wouldn't blame you either!
Thank you., You're all wonderful and kind and understand. I said it's ruined Christmas because I'm stuck in bed now in pain and can't do my usual few steps between the stairlift and the powerchair. I'm haivng to prioritise going to the loo - and that leaves me with horrible burning pain. It's not too bad if I stay on top of the bed.
But I agree it doesn't have to mean Christmas is ruined. Yes my plans for these days have gone out of the window. I was looking forward to marzipanning the Christmas cake I had made, and making some mince pies. Both quite an effort but I wanted to do it and it always leaves me with a feeling of achievement and satisfaction.
I've accepted now that it's the way it is - I won't marzipan the cake - we'll just have it as a fruit cake. Mincemeat will last till next year. There are other treats in the freezer. OH can wrap the Christmas presents and put them under the tree.
We're supposed to be going out for Christmas lunch at a hotel on Christmas day and I really don't want to miss that. But if OH pushes me in a manual chair from the stairlift to the car (and then I stay on my scooter) then I should manage it ok - don't really want to miss my Christmas dinner but see how it goes.
Am so sorry you had to go through this. We became suddenly exposed to a world where disabilities are not always accommodated when my OH became disabled early this year. Has taken us ages to get to grips with this steep learning curve and I imagine you and your OH are in a similar situation.
Choose your friends carefully, make sure your needs will be accommodated in any social situation ahead of time, and make sure both your OH and yourself are on the same page. Perhaps you both had unrealistic expectations of this social occasion. Is easy to do.
I wish you both all the best with this, a social life is possible but planning is essential because not all so called friends will consider your needs.
Xx
Have as good a Christmas as you can. Sounds like you've figured out a suitable "plan of action" for future occasions. So hopefully there'll be no further episodes like this. Maybe just put it down to their (and your husbands!) thoughtlessness. Some people are rather "young" (emotionally speaking) and need a bit of "educating" on appropriate ways to behave in these circumstances and may not be bad people per se - just "young" and thoughtless.
Why do you say Christmas is ruined?
You seem like a very determined person and I do hope you get some positivity back and not allow these horrible people to ruin your Christmas.
Some people just can't handlechange but you seem to have grasped it head on and good for you.
Maybe you can start and host things in your own home with nicer people and send OH out for the day to sulk because he sounds pretty horrible too and you deserve to be treated better.
Please don't allow any of them to spoil your Christmas, unless you really want it to and then I wouldn't blame you either!
Your ' friends ' should be ashamed of themselves ! I have no patience with people who don't know ' what to say ' if they are with someone has a disability. Utterly ridiculous.
I'm in a better frame of mind now and feeling more magnanimous. It's not their fault I'm disabled and clearly some people just don't know how to handle it. It was still extremely hurtful. But the issue really was we got our logistics wrong. And there was a lack of communication before we went and with OH when we got there. I knew as soon as I got in the door, we should have brought the wheelchair in (we had left it in the car as not sure how crowded it would be and I thought it would only be a short distance to hobble.. The distance to walk to a seat in the room was too far for me. Hence I was just standing there wondering how I was going to cope and OH was whisked off. So the whole thing was a disaster - but I'm the one left with the pain now and upset. I'm getting over the upset but am still stuck in bed with pain after trying to walk a bit too far. I should have been in the wheelchair. It's done now. It was all chaos and rushed (and that is OH sometimes). He is also very forgetful since his heart thing which doesn't help. So I will put it down to experience. And have to accept Christmas is ruined and I will be in bed and not seeing the tree we just put up. And have replied to the lady's message and photos and just explained we didn't quite get our logistics right this time and should have brought the wheelchair indoors, and we'll know differently another time, and wished them a happy Christmas. They should also have come to the door to greet us which would have been an opportunity to discuss whether or not it would work bringing the wheelchair in. As it was I got stranded, ignored and overdid things and am now suffering for it. But it's the season of goodwill so I;ve forgiven everyone and will have to learn to advocate for myself more in future - even if it means shouting and looking embarrasing.
Oh gentleshores - what a horrible experience - I have been ignored at parties, not because I have a disability , but for other reasons.
It’s one of those nights. Just can’t sleep …….
I'm finding it hard to get my mojo back before Christmas now - I had so many little bits and pieces to do and was ready to be relaxed and enjoy things, and now I'm stuck in bed in pain and haven't done them (I need to pace myself). And it all feels flat. I never know if the pain will ease in a few days or a few weeks. Really need to get myself out of this misery funk after it. But it's a bit difficult when you;re just sitting in bed.
The people who invited you really do not! sound like nice people, they sound nasty and selfish!( I could quite a lot worse) makes my blood boil when I hear stories like this, and then to send txt pics to sow what you used! to be like! shocking, cross them out of your lives, block them completely
CariadAgain
gentleshores
It gets worse! I've now had a text showing photos of us from a few years ago when we were there. Before I had mobility issues. How insensitive is that - here's a reminder of what you were like before you had a few years of suffering.
...and just what the heck was that supposed to be about?
I can't think of any positive reasons for doing that sort of thing. They've certainly not got an ounce of empathy by the sound of it. It sounds like they have their own little "picture" in their mind of "how Life is" and everyone has to slot into that. If they don't slot into that - then they just pretend to themselves that they have. I don't suppose for one second the thought has crossed their mind re how you felt at their party. A host is supposed to ensure - as far as they can - that everyone feels comfortable and finds a couple of people they can resonate with on some level to chat to.
I've got a local shopkeeper friend who makes a better fist of it in her shop - and, as she's serving any refreshments desired (paid for by us if we choose to have them) she's introducing Person A to Person B and telling people what they have in common with each other (ie "You both are into x/y/z" and cue for both people can then chat with each other/find out what else they might have in common). ......and that's a shop....not a party...though things have been known to turn rather party-like there occasionally....
Yes maybe it's just denial - unless it's some kind of passive aggressive way of saying - you were out of touch for a while (but then we weren't invited for a while!). Maybe some people had an easy pandemic, but we didn't. Bereavements, health issues and all sorts and we're a bit older than them as well.
Your shop sounds lovely.
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