Staying Organised with a Chronic Illness

September 27, 2016

Thanks for clicking through from 5 More Things I’ve Learned as a Partner to Someone with Chronic Illness – I decided to make the “Staying Organised” list into it’s own post as it was getting quite long, and I think it is useful in it’s own right.

We all have a lot going on in our busy lives; maybe you have small children like me, or maybe you have a high pressured job, perhaps you are caring for family… life is hard work! And someone dealing with a chronic illness, and by proxy, their partner, will have even more to worry about; there’s probably daily medications, be they prescription or complementary; there are appointments to organise and to go to; there are blood tests, MRIs, repeat prescriptions to order; there are records to keep about exacerbations and relapses; there are naps and early nights, food and supplements to source and buy, and healthy meals to cook – and eat!

Being organised helps day to day living, relieves a lot of pressure, and can help you make time for important things and enjoy life. Here are some of things that I have found really helpful:

Keep a diary or calendar with appointments in. There are loads of fantastic smartphone apps for this too, but as techy as I am, I find a paper diary the most useful. Some phone numbers to go along with the various appointments are useful too, in case you need to check anything or rearrange.

Keep a list of medications in your notebook or diary; make a note of when they started and stopped, the dosage and use, and maybe any side effects that occur. Some medications give you a patient card – keep this with you too.

Have a brief medical history written down, with approximate dates of diagnosis, symptoms, medications used previously and currently, and any other information that might be relevant. This is super helpful when meeting a new doctor, or in an emergency situation. We also have a signed note about who can speak on Nick’s behalf in case he loses his ability to speak or communicate again.

Have an emergency bag in the car. After a day in AnE (the emergency room) we quickly learned that the hospital had no gluten free food other than bruised apples, and coffee was hard to come by. We also learned that parking was a complete pain and expensive, that our phone batteries die more quickly than we would like and that if you leave the lights on in your car that your car battery will die too… so packing an emergency bag that stays in the car is a really good idea! Pack snacks to last at least 8 hours, bottled water, some pain killers (for me – the caring partner, not the patient – honestly the fluorescent lights coupled with the stress of an incompetent hospital department will bring on multiple headaches!), some coins for parking tickets, a spare phone charger, a book to read, lip balm,  sanitary products, chewing gum, and cosy sweaters and socks. You might need a phone number of someone to fix your car too, or a jump start pack! 😉 The list is just ideas – you probably won’t need them all – perhaps you would add something else?

Keep a list of useful numbers with you. This could include parents and close family,  reliable friends or baby sitters that can look after children or pets, your GP or regular doctor, neurologist or specialist consultant, your nursing team, you may have a specialist nurse for the treatment you are on (for example Nick had a Copaxone nurse). Generally, we all have all our numbers on our phones now, but sometimes its easier just to have a short list of vital contacts.

Use a service like Amazon Subscribe and Save for your regular supplements, household items and other regularly used items. For example, we use this for Floradix Iron and Vitamin tablets,  Vitamin D and Magnesium Supplement, and a Tumeric elixir, all of which Nick takes regularly to improve his wellbeing and overall health. I also use them for things like nappies, dog and puppy food, and natural cleaning stuff. You just click the subscribe and save option when ordering, and you can select how often you would like it delivered – monthly or less regularly and it will then be ordered automatically for you and you won’t have to worry about it!

Sleep as much as you can. Sleep deprivation is literally torture – it does us no good at all; when I am really tired I forget many things, I struggle to cope with minor stress, I have no patience, and I have no energy to get things done. When you have lots going on, symptoms to manage, people to care for, whatever your situation, a good night’s sleep really helps us manage our responsibilities, feel more in control about it all, be proactive and much more organised.

Stay organised with all the other aspects of your life too – maybe you’re a parent, or have a high pressured job, perhaps you have your own medical issues to worry about, or you have pets, or family members that need your help – whatever you have going on, staying organised with pre-planning, notes and lists, time management and many other things can be super helpful. I seriously need to take my own advice, and I would love any tips you have for this too!

I hope you have found this post useful. Share it with anyone you think might find it useful! Or pin it to keep it safe!


What other things do you find help you to stay organised? I would love to read your ideas in the comments below.

Thanks, keep smiling.

By Katherine

Katherine is a mother of 2, writer, designer, photographer, creative spirit, partner of Nick, lover of coffee in the morning, tea in the afternoon, and wine in the evening. She enjoys the outdoors, animals and nature, and craves the beach and the quiet. Katherine and Nick run Adapting Life together to raise hope for those diagnosed with a chronic illness and help those affected achieve their dreams and aspirations.

Leave a comment

Your email address will not be published. Required fields are marked *