As promise in my previous blog Dealing with doctors. here are some strategies that I used to manage the minefield and chopping seas of GP and hospital appointments, the endless testing and horrendous waiting that pushes your patience sometimes to breaking point.
Preparation is key:
Keeping a diary of symptoms, using dates and bullet points. If appropriate rate level of pain between 1 and 10 ( 10 being the worse pain ever). Record any over the counter treatments you have to use. Note if symptoms have effected your sleep, eating habits or daily activities. This is not just to share with doctors but can also help you recognise any lifestyle factors that may be impacting your symptoms.
Explore your worries and fears
These are often as bad as your illness itself. Don’t think you are only brave if you are able to ignore them. I have found that facing fears head on and acknowledging them to yourself makes them easier to deal with. Often we are told by friends and family not to worry “it will be alright” but most of us can’t turn that worry off. So I have found it better to just face it.
A useful activity is to brain storm them on a piece of paper and explore what your fears and worries actually are. When you really look at these thoughts you might be surprised. So really look at them, if you are scared – what is it your scared of and why? Is the tests, the possible treatments, the long effects or the impact on your family, your work? Is it all of those things? is it something you could change, or something that might not even happen. Look at each fear or worry in turn, be really honest with yourself. Is there anything you can do to resolve it right now, is it factual or self constructed, can you change it? if so how. List all these things. I found I cope so much better when I do this.
When I started doing this I can actually start seeing my concerns in manageable chunks. Things that I can deal with, instead of something overwhelming that is too big to handle. Allow yourself to have these worries and fears and try to not to beat yourself up for having them. It is completely natural to worry about matters related to health and hospitals and wellness. If you have a tendency for your worry to be all consuming, as it has been for me sometimes. Try this brain storming activity in 15 minute chunks. Only looking at one fear or worry at a time, stopping when you have come up with some ways of managing that problem or the fear you have about it. Then actively stop yourself from focusing on it. Go about your day, distract yourself from your worrying thoughts. Knowing you are going to go back and give yourself the time you need to explore your thoughts and feelings. Remember you can also think about strategies that will help you to cope with your worry.
A great book to read this in all area of life is called ‘Get your sh*t together’ by Sarah knight where the main principle of the book is all about how to manage life in sensible small chunks. Addressing the difference between what we need to do and what we must do. It’s a great book with strategies that can be easily slotted in to the most busy of lives or help the most challenging situation. I now use a ‘Must do list’ everyday now instead of having a to do list that only ever seems to get longer rather than gets tick off.
Talk to people about how you feel. You don’t have to share every details of your health issue, but talking helps lots of people. If you feel like you cant talk to your nearest and dearest, there are many groups online to connect with other people that maybe going through or have experienced the same health issue. I have found this very useful over the years. I am part of a few stroke survivor groups on Facebook, they are great for asking advice, sharing experiences and the emotions you have to deal with. As sometimes talking to friends and family can bring up other issues of not wanted to worrying them, dealing with their reactions, the impact their responses may have on you. But that is a topic deserving of a blog of it own for another day I think. My point is talk, but only if it will help you and trust your instinct on this one as they are normally right.
Once I learnt to manage my feelings about my health and ways to cope with my worries even they most trying
To take to your appointment
List of medications
List doses, time of day when you take them, if they are a daily medication or ones you only take when needed. I always write a list that can be put in my file, so I always put a date at the top.
This is vital if you have a complex or varied medical history, involving multiply conditions or symptoms. It helps you remember everything and get things in the correct sequence. Include treatments that have or have not worked. I have this on a typed sheet that I can just add to as time goes by and print off. Again you can hand it over to be put in your file, and helps to ensure that the medics have as much information as possible.
List of questions – in order of importance. Always take a list if questions and pen, leave space under each question to write reminders of the answer you were given. At the end of an appointment before leaving always cast your eye over your list and make sure you are not leaving with unanswered questions.
Listing questions also helps you to not over think of things when waiting for an appointment. You can start a list and then you can be reassured you won’t forget anything, this helps me to not over think as well. I keep this in my phone as it is always with me and then write up the night before or on the morning of the appointment, which is a good way of reminding yourself of all the details you want to discuss. Especially if you are apprehensive about your appointment.
During your appointment
Take someone with you – 2 sets of ears are better than one.
Often you are dealing with a lot of information, so its good to have someone else with you to take it all in. Especially if you are particular worried you may not be able to absorb everything that is discussed,, or if you are having test that are uncomfortable it might be more difficult to focus on what is being said. If you don’t have anyone you can take with you ask for a chaperone or you can contact PALS and ask someone to help you during your appointment.
(PALS- is NHS Patient liaison Service – there is a office in all major hospital or you can find contact details on line – they are great)
Ask all of your pre-prepared questions, noting answers if that will help you.
Ask for information to be repeated or explain again if you didn’t understand.
Communicating with doctors
Remember they are just a person, they may be medically trained but you know your own body better than anyone else. Don’t be rushed, make sure you have shared everything and asked everything you wanted too. Ask the doctor to write down any medical words, terminology, or tests they intend to do or book in the future, that you want to be able to remember after your appointment. On the flip side with appointment times being so limited I make sure I don’t waste any of their time with small talk or chatting about things that are not directly relevant.
Make sure you know exactly what is going to happen next
Before leaving your appointment. I always list of what I have understood of the outcome of the appointment and the next step to make sure I have everything correct. If this is having test or treatments I always ask when I should expect that to take place and what it entails. But don’t worry you can always get additional information after an appointments. Consultants secretaries are great at helping you to clarify information. I also always say yes tor receiving copies of letters as this is another ways of clarifying your understanding.
BE EXTRA KIND TO YOURSELF.
Give yourself 24 hours – whether its a consultations, tests, treatments, a review or a discharge appointment, give yourself 24 hours after to reflect be kind to yourself and acknowledge the impact on you. Even appointments with good outcomes can be exhausting because of all your apprehension beforehand. If it’s been crap or just given you more things to worry about – have a bloody good pity party, feel sorry for yourself, focus solely on you. But I only allow myself 24 hours to do this. After that time I dust myself off and explore how I am going to cope. with whatever emotions I feel I start thinking about strategies I might used to get through the next phase or how I am deal with information I have been given. This works really well for me and my husband.
Finally I know at the times of most need we often let our healthy routines slip, sleeping less because of worry, eating crap because you feel to tired to shop and cook healthy meals. So try really hard to look after yourself or ask for help when you know your finding this hard. If you can master this you will be able to manage almost anything your body throws at you.
Get your sh*t together by Sarah Knight sarahknightauthor.com