If you’ve read my rheumatology pre-pregnancy counselling post, you’ll know that the consultant I saw asked me to put together a one page sheet detailing all of the crucial bits of information that medical professionals need to know when looking after me. This chronic illness cheat sheet has gone down really well with everyone (medical professionals) who’ve seen it. So today, I thought I’d share with you what I included and how I created it! I really hope this helps others with chronic illnesses.
Chronic Illness Cheat Sheet: What To Include
The way I decided what to include, was by thinking about all the things medical professionals would need to know in an emergency. For example, they don’t need to know that I have Raynaud’s, but they do need to know that I’m severely photosensitive and can loose consciousness with my basilar type migraine.
Chronic Illness Cheat Sheet: Diagnosis – My Main Medical Conditions
For my diagnoses, I’ve only included my main three conditions. I didn’t want medical professionals to have to read the whole list of diagnoses, become overwhelmed and not be able to see the most important ones in amongst the list. I’m not trying to put medical professionals down here. It’s just that in an emergency situation, too much information can hold things up. So I have included the following:
Basilar type migraine, because this causes me to loose consciousness. It’s also rare and has some quite unique symptoms that most doctors don’t expect from more common types of migraine. So they need to be made aware of it.
hypermobile Ehlers-Damlos syndrome, because it affects every part of my body, so is likely linked to what ever is malfunctioning at the time of an emergency. Medical professionals also need to be aware of this because I’m prone to subluxations. If I’m unconscious and they move me in the wrong way, they’ll pop a joint out of place.
Postural orthostatic tachycardia syndrome, because medical professionals need to be aware that tachycardia (a resting heart rate of over 100 beats per minute) is completely normal for me and my PoTS is the reason why. It should also alert them to the fact that certain activities (e.g. standing up) will make this worse.
Chronic Illness Cheat Sheet: Allergies
Another thing that is really important in emergencies are allergies. For my chronic illness cheat sheet, I’ve only included allergens to medications and food sources commonly found in medications (wheat for example). You don’t want someone giving you drugs you’ve had allergic reactions to in the past! I’ve kept my full food allergy list to the ‘Additional Information’ pages, as if they’re trying to feed me it’s highly unlikely that we’re in an emergency situation.
Chronic Illness Cheat Sheet: Medications
Something all medical professionals need to know in an emergency is a list of medication that you’re currently on. So if they need to give you anything in an emergency, they can work out if it will contradict any of the medications you’re already on. I’ve listed both the medications and doses on my cheat sheet.
Chronic Illness Cheat Sheet: Other Important Info
I’ve also added other important pieces of information. These are things that are vital that medical professionals are aware of in an emergency, but that they likely wouldn’t even think of. These include that I’m photosensitive and my precision tinted lenses mustn’t be removed under any circumstances, that lighting mustn’t be changed without warning, that I’m prone to subluxations and that I need my blood pressure to be taken on my left arm.
Chronic Illness Cheat Sheet: Presentation
A lot of written information can be difficult to digest, particularly in an emergency. So I decided to make my chronic illness cheat sheet as visually appealing as possible. Not only does this make the information easier to take in, it also means I can fit more onto the page.
So instead of listing all my joints that are prone to subluxation, I popped them into a diagram. Instead of including a ‘warning’ title (more to read), I added a warning symbol to draw people’s attention to that information first.
Chronic Illness Cheat Sheet: How To Create It
I chose to create my chronic illness cheat sheet in Word. But, you could also use programs like Canva to do so. For my images, I just screenshot things I wanted (like the woman’s body) from Google Images. Then I inserted them into my Word document. I had to play about a bit with positioning and text size, but that’s basically all I did!
I couldn’t work out how to digitally mark on my woman’s body image which of my joints are prone to subluxation. So I decided I’d add these by hand when I printed off my chronic illness cheat sheet. This also means that when new joints subluxate (as is almost certain that they will), I can add them on by hand too.
The great thing about my chronic illness cheat sheet is that it can be added to at any time. I don’t always have to print off a new sheet. I wasn’t aware that having my blood pressure taken on my right arm would cause my shoulder to subluxate until it happened at my maternity booking appointment. So I’ve added this by hand. I also wasn’t aware that my limit for being under fluorescent lights was just 3 and a half hours, until I was kept at the hospital for 5 and a half hours and had problems with my migraine. So this has been added by hand too.
Chronic Illness Cheat Sheet: Where To Put Additional Information
Now, if you’ve got more than one chronic illness (or even if you’ve only got the one), one page is unlikely to be enough to get all the detailed information about your conditions on. So I’ve created an additional information document that I attach underneath my chronic illness cheat sheet.
This document (not shown) includes the medical professionals who are involved in my care and the hospitals that I see them at. It also includes all my medical conditions, when the conditions started, medication I’ve stopped for pregnancy and a full list of allergies and intolerances. This is the document that I take with me to appointments with new medical professionals. I do this, as I’ve had a few professionals get key bits of information wrong in their clinic letters. Understandable, as there’s an awful lot to take in.
Having this document available in addition to my chronic illness cheat sheet means that my medical professionals aren’t overwhelmed in an emergency, but they have the ability to find any extra information should they need to look for it.
Do you have a chronic illness cheat sheet? If so, what you include and how did you set it out?
If you don’t, but this post has inspired you to create one, please do let me know!
Elise from Fragile Bones has created an In Case Of Emergency sheet inspired by my chronic illness cheat sheet, which I’d highly recommend you check out.
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