The Dyspraxic Doctor's Guide to: Having an Operation
Recently I went into hospital to have an operation, to correct my lazy eye. I thought having had this experience I’d write an article about how to manage as a patient in hospital with dyspraxia, in case my insights are helpful for you or a loved one in the future.
The practicalities of preparing for hospital, having an operation, and recovering afterwards, all do involve planning, organising, working memory and motor skills, which can be more difficult with dyspraxia. When you not only have dyspraxia, but are also anxious and tired because of your operation, these skills can be doubly difficult.
I’ve deliberately tried to make this as clear as possible and include all the basics so that it is easy to use it at each stage in the process even if you are stressed or finding it difficult to process information. It also means that you can show it to anyone helping you around the time of the operation so that they know what you may find difficult in relation to your operation and how to help you.
When you get the appointment details:
It’s important to get to your appointment on time, so put a note and a reminder in your diary or phone calendar when you receive the letter.
If you need time off work, or someone to look after kids, it’s best to budget more time than the appointment itself as they often run behind. You don’t want to be worrying about having to get back to something else, as it just makes your mind too stressed to focus on the appointment.
The night before the appointment:
Think about what to wear – depending on your operation you may need to be examined, so don’t wear anything that’s difficult to get into or out of.
The night before the appointment put the things you need for it in your bag or right in front of the front door.
The things you need to take:
The appointment letter
Some change/cash for parking or transport
A list of any medical problems and previous operations
Your current medication (either the boxes, a list, or the ‘repeat’ section of your prescription from your GP) and any allergies you have
A list of any questions you want to ask about the operation
On the day of the appointment:
Make sure you leave early, especially if it is somewhere you haven’t been before. I find it difficult with my dyspraxia to work out how long I’ll need to get places, but I figure it’s better if I get there far too early than too late!
The letter often says where to park, and where the appointment is, so take it with you. Hospitals are often very confusing, especially if you don’t have a good sense of direction. They will usually have volunteers or a reception desk at the entrance to give you directions. It’s absolutely ok to ask them where to go, to draw it for you, give you a map, or write the directions down.
In the appointment:
The surgeon or anaesthetist will have some questions they need to ask you about your health, your symptoms and your medication. My dyspraxia affects my working memory and so I often worry ‘what if I forget to tell them about such and such’. It’s important to remember that it’s actually their job to remember what to ask you about! If you’re worried you’ll forget what to answer then take a list of your health problems and your medication, and refer to it.
Appointments before your operation are your opportunity to find out more about the surgery, so that you can plan any changes that need to happen in your life before and afterwards. It helps if you have made a list of questions, or if you have someone with you to remember to ask. But don’t panic if you forget to ask something – there will be other opportunities, before and after your operation.
The hospital will often have written information available to give you about the operation – ask for a leaflet in the appointment. If they don’t, and you’re worried you’ll forget the information you’re being told, then make some notes or ask the health professional to write a few key points down for you.
Sometimes you may be asked to have a telephone appointment before your operation, I had one to assess my anaesthetic risk pre-op. I find it hard to focus on telephone conversations and process auditory information, but it was fine. Make sure you have a quiet place to speak, and written information about your health and medication to hand to refer to. If you have to ask them to slow down or repeat, that’s fine. They are used to speaking to people who are anxious for whatever reason.
Preparation and packing for hospital
In the run up to your operation:
If they recommend that you don’t do certain activities for 1-2 weeks, then budget not to do them for two weeks. This takes the pressure off you. Block out the recovery time in your diary or phone calendar in a bold colour, so that you don’t accidentally book things in that time.
Try to get as ‘on top’ of jobs around the house as you can, as it may be some time before you can do it again. Ask for help with this if you need it. Make sure that you have clean bedding and towels. Easy to cook food or snacks in the fridge. Clear floors, stairs and hallways so that you don’t have things to trip over. Make sure you’ve got a supply of medication, painkillers, tissues.
Explain to those around you, including children, what you will be unable to do and roughly how long for. Ask for help for specific tasks you usually do, and help with planning how these will get done. People sometimes aren’t aware of what you need, and wait for you to ask for help. It all gets a bit socially fraught and difficult to navigate. I find it’s better to just be up front about it.
Packing for your operation:
Put everything in one bag so that you have less to remember and lose. A backpack is great.
Pack ahead of time and put the bag in front of the door so you don’t forget it.
Don’t take anything unnecessary or expensive, you don’t want to be worrying about losing it. If there’s something you want to take which you are worried about losing then write your name on it in permanent pen or stick a name label on it.
The hospital will have everything you need, so don’t stress about forgetting things. There are some things you can take to make your stay a bit nicer and more comfortable for you, my suggestions:
1. A dressing gown. The hospital gowns you are given in hospital are notorious for gaping and coming apart in all the wrong places. I have enough difficulty co-ordinating myself without having to worry about flashing other people on the ward! Wearing a dressing gown over the top of the hospital gown means that you can protect your modesty!
2. Slippers or socks with grip soles. When you’re tired, your ability to co-ordinate and balance can be affected even more. You may have to wear special stockings for your stay which are to reduce the risk of clots. However these make walking on the floor slippy, so a pair of slippers or socks with grip soles help to reduce the chance of you slipping over.
3. Snacks, squash and a cup. Hospital food is usually not that great! Take some little packs of snacks that you like, which are easy for you to eat and digest. Keeping your fluids up after an operation is important, but I often can’t sense when I’m thirsty. Taking a bottle of my favourite squash to mix with water helps motivate me to drink! I also took a re-usable travel cup because I find it difficult to use the cheap plastic disposable cups without spilling it all over myself.
4. Sensory treats. The hospital environment can be ‘sensory overload’ for a lot of people. Think about what would help you cope with this. An eye mask, ear plugs, headphones with some nice music or sounds downloaded, a little bottle of scented spray or oil, a nice jumper if you get cold easily. Alongside this, something small which reminds you of home or someone you love can be comforting when you’re by yourself.
5. Easy entertainment. You might not be able to do much after your operation, but you may have to wait around a lot before and after it. A book or audiobook of short stories, a book of pictures or nice quotes, a couple of easy to watch tv programmes, a fidget toy or a pen and paper to doodle with to keep your hands busy.
On the day
Remember not to eat and drink! Put a note/reminder on your phone and in your diary. It’s easy to forget when you’re half asleep in the morning so I put a big note by the kettle on the morning of my operation reminding me not to eat and drink. I also have a whiteboard by my bed so I wrote it on there as well, and took away water by my bed so that I wouldn’t drink it in the night without realising.
Have a shower and do any other self-care tasks you may not be able to do for a while. For example I knew I wouldn’t be able to wash my hair for a few days, so I gave it a good wash and dry on the morning of my operation.
Wear something that is easy to change into and out of.
Being in hospital
Concentrate on looking after yourself, and try to stay in the moment as much as possible.
Use your sensory treats to ground yourself and reduce your anxiety.
Don’t be afraid to ask people to repeat instructions, re-phrase them, or show you what they mean. Try to write down instructions that you are given or ask someone to write them down or draw them for you, this means you don’t have to hold them in your working memory.
It’s ok if you take time to do something or to learn to do something, the staff should be patient and helpful. If they aren’t, explain that you have dyspraxia and that this means that you may take some extra time to learn things, but that you will get there. Don’t take this as a reflection on yourself, it is actually their responsibility to explain or teach you in a way that works for you.
Before you leave hospital, make sure you (or whoever is with you) is clear on
What you can and can’t do, and how long for
What care your wounds need, and how long for
What medication you need to take, how often, and how long for
What follow up is planned, and any appointments which are booked or need to be booked
What signs of getting worse you need to look out for, and where to seek help
Looking after yourself:
Take it easy, and don’t plan anything soon after your operation.
Accept help, but don’t accept visits which don’t have a purpose or aren’t enjoyable for you. Socialising is tiring, particularly when you feel you have to entertain people and aren’t up to it.
Ask people to do specific things for you, this is usually easier for you and them. They won’t always be able to help, but being specific and direct helps you to get help which actually assists you and plan. For example you could say to family/friend: I’m finding it difficult to work out how to get little one home from nursery on Mondays and Tuesdays whilst I can’t drive for two weeks, could you help me to plan and co-ordinate this with other mum’s?
It’s ok to take shortcuts and make life as easy as possible at the moment. Microwave meals, takeaways, disposable plates, having your shopping delivered, are all things which can help you manage.
Try to keep the area around you as clear as possible. Keep some fluids close by as well to remind you to drink.
Looking after a wound:
After an operation, you’ll likely have a wound which may need dressing and careful looking after.
The staff will clean and dress the wound for you whilst you are in hospital. Watch how they do this. Write down the steps, or photograph the steps. Take a photograph of the ‘finished’ dressing so that you know what it is supposed to look like.
You may have to change the dressing yourself at home. Make sure you’ve got plenty of space and a clean surface to collect everything you need for the process beforehand: gloves, sterile water, gauze to clean, wound dressing, tape, and a bin. Often you are advised to clean the wound with cooled boiled water. I find this a massive faff as there are so many steps where I can contaminate or spill it or burn myself. You can buy sterile water from a pharmacy or online, which I find much easier. I use disposable gauze, chucking each piece out after it’s used. Do use disposable gloves if you can’t be trusted to keep your hands clean.
You’ll be told when you can start to shower or bath again. If your wound is on a limb you can hang it out of the bath, or buy a plastic cover which people use over plaster casts in the shower. If you are showering, take the shower off the hook so that you can more easily direct the water away from your wound. If you need help getting into and out of the shower/bath, or with the process of washing whilst you’re recovering, then popping a swimming costume on can mean that you can have a friend or relative help.
Looking after medication:
After your operation you will have painkillers and other medications to take.
Keep these in the same place, preferably in a small bag or pouch so they all stay together, within reach.
Work out exactly what times you need to take them. ‘Four times a day’ is ambiguous and easily forgotten or missed; 8am, 12pm, 6pm and 10pm for example is much better. Set up a system on your phone to remind you to take them at specific times, a recurring alarm with which medication to take. Ask other people to check with you that you’ve taken the medication, or put reminder notes up near you as well.
If you need to go out, you’ll need to remember to take your medication with you. Put a note on the door to remind you to take your medication and some water to take them with. Having all your medication in the same bag helps this, as you can just take it with you. If your medication is refrigerated, pop it in a lunch cool box with an ice block so that it doesn’t warm up during the time you’re out.
At the moment I’m having to use eye drops every two hours. Sometimes inevitably I miss my eye. It’s much better for it to take a few ‘tries’ each time than to avoid doing it altogether. If you run out of drops or cream earlier than expected because you have spilled some or found it difficult to be accurate, you can always ask your doctor for some more. Be patient with yourself and keep trying.
Dr Emma Tremaine trained as a medical doctor and psychiatrist before starting up a social enterprise specialising in comprehensively supporting adults and young people with Dyspraxia (The Dyspraxic Doctor). She also provides regular emotional and social skills therapy for children and young people who have a neurodevelopmental diagnosis (including Autism/Aspergers and ADHD). Dr Emma has Dyspraxia herself and is a passionate writer and speaker about neurodiversity, mental health and her own experience becoming a doctor with a hidden disability. She also enjoys horse riding, yoga, amateur sewing and making people laugh.