On holiday and really struggling — Scope | Disability forum
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On holiday and really struggling

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OnlyAlex
OnlyAlex Scope Member Posts: 109 Pioneering

Hi everyone, I’m on a cruise and I’m really struggling. I had quite a severe Autistic meltdown back in January of this year where I couldn’t speak or do anything. I’m normally very independent but struggle with change, so a complete meltdown was not only unexpected but caused major problems as people just didn’t recognise who I was anymore.

Fast forward three months or so and I’m doing a lot better. I can speak again and have support to help me go out once a week at home.

Mum and Dad booked a cruise for me back in January  as something to look forward to in the hope I would be fully recovered by now. I would normally be able to manage being on a cruise and going ashore on excursions with them quite well, we were only on one a year ago or so and I had a blast.

The problem is, I haven’t fully recovered and my anxiety and intrusive thoughts are really overwhelming and I am now on the cruise as I type this. Mum and Dad said to me don’t worry if you don’t feel able to leave the ship etc, even if you stay in the cabin and read and enjoy the views that’s fine.

Unfortunately I’ve put a lot of pressure on myself to try and make this holiday perfect and prove to myself I’m back to normal, but it hasn’t gone that that way. I haven’t been on any excursions because as soon I leave the ship I start rocking back and forth with anxiety and want to go back onboard. Today I have managed to go ashore for thirty minutes and have a drink in a cafe before coming back onboard. Mum and Dad says that progress, but when I used to go on five hour excursions with them everyday on a cruise, I feel like a failure.  

I’m so so lucky to have been able to go on holiday. I come back on Monday and I’m so looking forward to going home. Isn’t that awful of me to say that? I have had a nice holiday on the ship, it’s just the things I wanted to do and used to do I couldn’t do and that has made me feel terrible.

Sorry to go on. Has anyone else experience Autism meltdowns or setbacks / regression? I’m 28 and was only diagnosed in 2020 so it’s still all rather new to me.

Many thanks

Comments

  • Zimba
    Zimba Community member Posts: 1,873 Pioneering
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    @OnlyAlex

    Small steps can only be a good thing it sounds like your really trying, like your parents say its progress so try not to be to hard on yourself and keep trying at your pace when you feel up to trying again.
  • OnlyAlex
    OnlyAlex Scope Member Posts: 109 Pioneering
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    Zimba said:
    @OnlyAlex

    Small steps can only be a good thing it sounds like your really trying, like your parents say its progress so try not to be to hard on yourself and keep trying at your pace when you feel up to trying again.
    Thank you very much. 🙏 
  • rubin16
    rubin16 Community member, Scope Member Posts: 548 Pioneering
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    OnlyAlex said:

    Hi everyone, I’m on a cruise and I’m really struggling. I had quite a severe Autistic meltdown back in January of this year where I couldn’t speak or do anything. I’m normally very independent but struggle with change, so a complete meltdown was not only unexpected but caused major problems as people just didn’t recognise who I was anymore.

    Fast forward three months or so and I’m doing a lot better. I can speak again and have support to help me go out once a week at home.

    Mum and Dad booked a cruise for me back in January  as something to look forward to in the hope I would be fully recovered by now. I would normally be able to manage being on a cruise and going ashore on excursions with them quite well, we were only on one a year ago or so and I had a blast.

    The problem is, I haven’t fully recovered and my anxiety and intrusive thoughts are really overwhelming and I am now on the cruise as I type this. Mum and Dad said to me don’t worry if you don’t feel able to leave the ship etc, even if you stay in the cabin and read and enjoy the views that’s fine.

    Unfortunately I’ve put a lot of pressure on myself to try and make this holiday perfect and prove to myself I’m back to normal, but it hasn’t gone that that way. I haven’t been on any excursions because as soon I leave the ship I start rocking back and forth with anxiety and want to go back onboard. Today I have managed to go ashore for thirty minutes and have a drink in a cafe before coming back onboard. Mum and Dad says that progress, but when I used to go on five hour excursions with them everyday on a cruise, I feel like a failure.  

    I’m so so lucky to have been able to go on holiday. I come back on Monday and I’m so looking forward to going home. Isn’t that awful of me to say that? I have had a nice holiday on the ship, it’s just the things I wanted to do and used to do I couldn’t do and that has made me feel terrible.

    Sorry to go on. Has anyone else experience Autism meltdowns or setbacks / regression? I’m 28 and was only diagnosed in 2020 so it’s still all rather new to me.

    Many thanks


    I have autism so can relate with alot of things you mentioned. I think its important not to push yourself too much and to know your limits. Sometimes just doing small steps make a big difference and you should be proud of yourself for doing alittle bit more each time. I am the same and most of the time I will have big ambitions and push myself too far to the point I burn out or have a melt down and then I take it out on myself becuase I feel like a failure.

    I think the best thing to do is to set yourself smaller goals that are more achievable and not over stretch yourself to the point your anxiety level gets too much and you end up having a melt down. Be proud of yourself for the small steps you do manage to do even if you do just manage 30mins its a step in the right direction so don't feel hard on yourself. Being on a cruise is a big change and has alot of sensory issues assosicated with it, from being busy, noisy and not being able to escape or get away.

    It sounds like your parents are really supportive and are not pushing you too much.
    I have Autism, ADHD, Schizophrenia, Gilberts Syndrome and Crohn's Disease and have knowledge in these areas.


  • 66Mustang
    66Mustang Community member Posts: 13,629 Disability Gamechanger
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    Hi Alex

    It sounds like your parents are very supportive and understanding, and not putting any unnecessary pressure on you, which is great

    I have had issues with (perceived) regression myself, I have intrusive thoughts, the nature of which are probably different to yours but the impact of them is maybe similar. Around 7-8 years ago I used to do a certain activity with no issue, then after 2-3 years the thoughts got very bad and I could only do a fragment of what I did, and that’s if I really pushed myself. In the present day I am back up to maybe half of the original amount, with the help of medication and support. Over the long term that would be an overall regression but in the shorter term it’s huge progress

    I think it’s perhaps good to understand that we all move forwards and backwards over the long term of our lives, even people without disabilities. During that time we experience changes over the short, medium and long term, the positivity of which would be interpreted differently depending on the time frames you are viewing these changes over

    I know it’s easy to say but I would try to just enjoy where you are at the moment, without putting undue pressure on yourself. If you do what you want to and feel able to do then it’s still a good holiday, even if that’s simply sitting in your cabin reading a book :)

  • bookrabbit
    bookrabbit Community member Posts: 196 Pioneering
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    I am also on the autistic spectrum and have experienced similar things and am not able to do a fraction of the things I used to do due to burnout. It is upsetting when you focus on it so my advice is to give yourself permission just to focus on the positive. Leave the ship if you want to leave the ship but don't put pressure on yourself. It is huge that you are even there so soon after a big burnout and you are lucky to have such supportive parents. Maybe remember the less pressure you put on yourself the more able they will be to enjoy their own holiday, I mean don't feel that you have to push yourself for their sake because they are likely to be happier if you are happier and unhappier if you are unhappier. 
    I find just relaxing and being content to follow the moment works best and maximises what I can achieve. And reframing the situation to see the positive aspect in the forefront saves so much angst.
    I am currently homeless and have used this approach and it has worked really well most of the time. I have coped much better than I would have expected and done things I wouldn't have expected to be able to do. And I would have done more if my mobility wasn't holding me back too. I imagine that a ship is much like a hotel that moves although due to sensory issues around motion I couldn't cope with it myself I think a moving safe space would be the ideal way to travel and as your parents said just the view out the window would be refreshing and worth the trip.


  • Albus_Scope
    Albus_Scope Posts: 4,081 Scope online community team
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    Heya @OnlyAlex I'm sorry to hear you've been struggling, but you HAVE made great progress after your burnout, which I know first hand is never easy to do.  So be proud that you've made it onto the cruise and it's great you have such supportive parents. <3 

    I'm in my second year of being diagnosed, so I get it's all a learning experience, so please don't be hard on yourself.  We're complex creatures and after years of masking, it's tough working out what does and doesn't work for us. It took me years to get over some really bad burnout, because I didn't know it was burnout then. 
      As others have said, pressure is the thing here. I'm exactly the same and always put unneeded pressure on myself to do things, which will then feed into the anxieties even more so the burnout takes longer to go away. You made it out for 30 mins, which for me, would be HUGE. So don't see it as "only" 30 mins, see it as you've made some new memories. :)

     So just do what you want to, not what you feel you should be doing. You're doing great. :)
    Albus (he/him)

    Online Community Coordinator @ Scope

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  • Lou67
    Lou67 Community member Posts: 7,236 Disability Gamechanger
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    @OnlyAlex
    Hi I only wanted to come on and say that’s definitely a positive you going off the ship for a coffee, please don’t put pressure on yourself. 
    I really hope you can relax and enjoy the view and just do whatever makes you comfortable.
    Its amazing you even managed to go the cruise altogether so give yourself a Pat on the back for that. 

    Take care ❤️
  • OnlyAlex
    OnlyAlex Scope Member Posts: 109 Pioneering
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    rubin16 said:
    OnlyAlex said:

    Hi everyone, I’m on a cruise and I’m really struggling. I had quite a severe Autistic meltdown back in January of this year where I couldn’t speak or do anything. I’m normally very independent but struggle with change, so a complete meltdown was not only unexpected but caused major problems as people just didn’t recognise who I was anymore.

    Fast forward three months or so and I’m doing a lot better. I can speak again and have support to help me go out once a week at home.

    Mum and Dad booked a cruise for me back in January  as something to look forward to in the hope I would be fully recovered by now. I would normally be able to manage being on a cruise and going ashore on excursions with them quite well, we were only on one a year ago or so and I had a blast.

    The problem is, I haven’t fully recovered and my anxiety and intrusive thoughts are really overwhelming and I am now on the cruise as I type this. Mum and Dad said to me don’t worry if you don’t feel able to leave the ship etc, even if you stay in the cabin and read and enjoy the views that’s fine.

    Unfortunately I’ve put a lot of pressure on myself to try and make this holiday perfect and prove to myself I’m back to normal, but it hasn’t gone that that way. I haven’t been on any excursions because as soon I leave the ship I start rocking back and forth with anxiety and want to go back onboard. Today I have managed to go ashore for thirty minutes and have a drink in a cafe before coming back onboard. Mum and Dad says that progress, but when I used to go on five hour excursions with them everyday on a cruise, I feel like a failure.  

    I’m so so lucky to have been able to go on holiday. I come back on Monday and I’m so looking forward to going home. Isn’t that awful of me to say that? I have had a nice holiday on the ship, it’s just the things I wanted to do and used to do I couldn’t do and that has made me feel terrible.

    Sorry to go on. Has anyone else experience Autism meltdowns or setbacks / regression? I’m 28 and was only diagnosed in 2020 so it’s still all rather new to me.

    Many thanks


    I have autism so can relate with alot of things you mentioned. I think its important not to push yourself too much and to know your limits. Sometimes just doing small steps make a big difference and you should be proud of yourself for doing alittle bit more each time. I am the same and most of the time I will have big ambitions and push myself too far to the point I burn out or have a melt down and then I take it out on myself becuase I feel like a failure.

    I think the best thing to do is to set yourself smaller goals that are more achievable and not over stretch yourself to the point your anxiety level gets too much and you end up having a melt down. Be proud of yourself for the small steps you do manage to do even if you do just manage 30mins its a step in the right direction so don't feel hard on yourself. Being on a cruise is a big change and has alot of sensory issues assosicated with it, from being busy, noisy and not being able to escape or get away.

    It sounds like your parents are really supportive and are not pushing you too much.
    Thank you so much for commenting, it really means a lot. You have definitely given me food for thought.

    I’m sorry you also feel this way sometimes. 🤗 
  • OnlyAlex
    OnlyAlex Scope Member Posts: 109 Pioneering
    Options
    66Mustang said:

    Hi Alex

    It sounds like your parents are very supportive and understanding, and not putting any unnecessary pressure on you, which is great

    I have had issues with (perceived) regression myself, I have intrusive thoughts, the nature of which are probably different to yours but the impact of them is maybe similar. Around 7-8 years ago I used to do a certain activity with no issue, then after 2-3 years the thoughts got very bad and I could only do a fragment of what I did, and that’s if I really pushed myself. In the present day I am back up to maybe half of the original amount, with the help of medication and support. Over the long term that would be an overall regression but in the shorter term it’s huge progress

    I think it’s perhaps good to understand that we all move forwards and backwards over the long term of our lives, even people without disabilities. During that time we experience changes over the short, medium and long term, the positivity of which would be interpreted differently depending on the time frames you are viewing these changes over

    I know it’s easy to say but I would try to just enjoy where you are at the moment, without putting undue pressure on yourself. If you do what you want to and feel able to do then it’s still a good holiday, even if that’s simply sitting in your cabin reading a book :)

    Hi, thanks so much for replying. Yes - my parents are very supportive and kind.

    That’s a very good way to look at things, maybe I was overthinking and trying to put myself into a box.

    Well done for all that progress you’ve made too! 😊 
  • OnlyAlex
    OnlyAlex Scope Member Posts: 109 Pioneering
    Options
    I am also on the autistic spectrum and have experienced similar things and am not able to do a fraction of the things I used to do due to burnout. It is upsetting when you focus on it so my advice is to give yourself permission just to focus on the positive. Leave the ship if you want to leave the ship but don't put pressure on yourself. It is huge that you are even there so soon after a big burnout and you are lucky to have such supportive parents. Maybe remember the less pressure you put on yourself the more able they will be to enjoy their own holiday, I mean don't feel that you have to push yourself for their sake because they are likely to be happier if you are happier and unhappier if you are unhappier. 
    I find just relaxing and being content to follow the moment works best and maximises what I can achieve. And reframing the situation to see the positive aspect in the forefront saves so much angst.
    I am currently homeless and have used this approach and it has worked really well most of the time. I have coped much better than I would have expected and done things I wouldn't have expected to be able to do. And I would have done more if my mobility wasn't holding me back too. I imagine that a ship is much like a hotel that moves although due to sensory issues around motion I couldn't cope with it myself I think a moving safe space would be the ideal way to travel and as your parents said just the view out the window would be refreshing and worth the trip.


    Thank you so much for replying, it means a lot to me.

    Your words have helped a lot - I’m just going to try and focus on the here and now and be mindful.

    I am sorry to hear you’re homeless, are you receiving support? 🤗 
  • OnlyAlex
    OnlyAlex Scope Member Posts: 109 Pioneering
    Options
    Heya @OnlyAlex I'm sorry to hear you've been struggling, but you HAVE made great progress after your burnout, which I know first hand is never easy to do.  So be proud that you've made it onto the cruise and it's great you have such supportive parents. <3 

    I'm in my second year of being diagnosed, so I get it's all a learning experience, so please don't be hard on yourself.  We're complex creatures and after years of masking, it's tough working out what does and doesn't work for us. It took me years to get over some really bad burnout, because I didn't know it was burnout then. 
      As others have said, pressure is the thing here. I'm exactly the same and always put unneeded pressure on myself to do things, which will then feed into the anxieties even more so the burnout takes longer to go away. You made it out for 30 mins, which for me, would be HUGE. So don't see it as "only" 30 mins, see it as you've made some new memories. :)

     So just do what you want to, not what you feel you should be doing. You're doing great. :)
    Hey Albus, cheers for the reply and for your kindness. 🤗 
  • OnlyAlex
    OnlyAlex Scope Member Posts: 109 Pioneering
    Options
    Lou67 said:

    @OnlyAlex
    Hi I only wanted to come on and say that’s definitely a positive you going off the ship for a coffee, please don’t put pressure on yourself. 
    I really hope you can relax and enjoy the view and just do whatever makes you comfortable.
    Its amazing you even managed to go the cruise altogether so give yourself a Pat on the back for that. 

    Take care ❤️
    Thank you so much, Lou - very kind of you. Hope you’re well. 🤗 

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