• Replies 5 replies
  • Subscribers 85 subscribers
  • Views 195 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Coping with Hospitals

DazeAndConfused

Hi,

I am looking for suggestions that might help me over the next few weeks. Last year I discovered that there is a high likelihood that I have ASD, and I have been coming to terms with that with help. Unfortunately in the last few weeks I have discovered I need an urgent heart operation, I am, as you might expect petrified of the operation, but equally the stay in hospital is going to be testing. I am extremely sensitive to bright lights and excessive noise both of which are the main stay in most hospitals. To make it worse still I have an extreme phobia of needles. I have dark glasses and cap to cope with the lights and Loop ear plugs to levitate some of the noise. My GP has given me diazepam for the stress and local numbing cream for the needles. I would appreciate any ideas that might make the whole experience more tolerable and well stave of me becoming a blubbering wreck.

Thanks in anticipation 

  • You should have a named nurse who is in charge of your nursing care, they may be able to help, but based on personal experience I wouldn't hold my breath.

  • Hello, it is such a really good idea that you have reached out to all of us here on the community.  Between us all; I am confident we will have plenty of ideas for you to consider - to see if some of them might support you too.  Sometimes, as much as anything else, it is just good to know that other people experience things in a similar way that you may do so.

    Some Hospitals have a Team of specialist Nurses known as something like "Learning Disability Liaison".

    For "Learning Disability" please do read it to yourself as "Learning Disability & Autism"!

    https://www.nhs.uk/conditions/learning-disabilities/going-into-hospital/

    You could contact your Hospital's Patient Advice and Liaison Service (PALS) if the Hospital website looks a bit if a nightmare to navigate - as they should be able to help you find out if there is such a Team available and how to contact that team.

    It can be confusing if your Hospital is part of a group of sites - as sometimes the index of teams & departments is just for the single site - but PALS should know how to find out.

    https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

    If you are not confident filling out the My Health Passport by yourself - if there is a Learning Disability Liaison Nurse available - they might be able to answer some of your questions and concerns.  I want to give you confidence that you do not require a formal Autism diagnosis to make use of that passport (I have used it a couple of times while I was waiting for my formal ASD assessment and diagnosis.

    Something our local Learning Disability Liaison Nurse helped me to think about was: would I find it easier (if I was feeling a bit overwhelmed etc. and maybe not so happy to communicate in my usual way in some situations); would I like to make use of diagrams such as: an annotated pain scale / stress & frustration scale / body map. 

    The nurse explained it can be easier to point at a diagram if disregulated / overwhelmed / in pain (rather than trying to communicate that by pointing at yourself or trying to explain yourself using your usual communication means.

    For your stay in Hospital, maybe write yourself a packing list for your overnight bag (the Hospital will probably give you guidance about standard items). 

    What their list might not also consider are things you would find comforting from an Autism sensory point of view.  Maybe you like soft ear plugs and a cotton eye mask to aid sleep?  Hospitals can be hot places - how about a folding paper fan?  How about an easy to clean, quiet fidget item you can have available - perhaps a silicone caterpillar, noodles, or something similar like a stress ball (The Works shop is often quite a good source of reasonably priced things like those).  Would you like some active noise cancelling headphones / ear buds to use with your SmartPhone on the ward.  Do you need to discuss ahead of time with the ward about any dietary requirements?

    Something else to consider - who do you feel you could cope with coming to visit you while you are in Hospital.  Learning about what your Autism might mean to you, personal to you, can include learning to use boundaries to support your needs. 

    If you are worried too many friends / relatives / neighbours / work colleagues could add to your stress by being Hospital Visitors - maybe let them know how much you would really appreciate their help with practical things at hone ...instead of in the Hospital.  (Water plants, check post / parcels aren't visible from the road, out your wheely bin out and in, check on your pet, put fresh milk in the fridge ready when you return home, a welcome hand with hanging up the laundry while you recuperate at home, be a welcome visitor at home - when you would love a catch up chat over a cup of tea or coffee).

    Most Hospitals are familiar with the Hidden Disabilities Sunflower Lanyard etc.  You could ask your cardiology nurse ahead of time how you can ensure their team members and ward team will know you are a hidden disability person?

    https://hdsunflower.com/uk/insights/post/for-people-with-non-visible-disabilities

    Best wishes with everything.

  • When dealing with needles, I always ask the practitioner if they could distract me by talking about a topic I have interest in. Usually I just barrage them with music facts or ask them to tell me how they got their position. Sometimes distracting your mind from some of the tricky moments can be helpful.

  • I had a similar question a while back and one of the mods recommended using My Health Passport.

  • Hello  , do you have any plans or any hobbies you can look forward to after the operation? Sometimes having something to aim for to get you through the extreme tough times can make the temporary burden easier to handle mentally. If you enjoy reading this could be a great escape from the reality of your situation? Long walks if you are physically fit enough before you have the operation to help clear you head and prepare somewhat?