Things about living with invisible illness.
After my somewhat melancholy post the other day, I have slept, eaten, drunk and medicated to my hearts content and am feeling slightly more coherent! If you've been reading for any length of time, you'll know I have PoTS/autonomic dysfunction and that I'm pretty open about it. I could pretend I don't have a chronic illness (given for the most part it's invisible)...but what would that really achieve? So here's a few things I've learned about living with invisible illness:
- It's easier to say you have a heart condition than to explain PoTS. PoTS is a condition that affects my autonomic nervous system - thus affecting everything that my body should automatically regulate (blood pressure, heart rate, digestion etc.), however, trying to explain that to someone without medical knowledge is inevitably boring for them, and time consuming for me. How do you explain a condition that many doctors don't even understand?
- Dry shampoo and good deodorant becomes your best friend. Showering becomes less of a priority in life - particularly if you don't need to leave the house! Similarly, comfy clothes are the way forward - comfy enough to snooze a day away, decent enough you can answer the door to the postman without it looking like you've just got out of bed at 4pm.
- Ready meals may not be gourmet, fresh and healthy, but if the alternative is snacking on crisps and biscuits because you don't have the energy to cook? Always go for the ready meals. Pick carefully and they can actually be relatively nutritious! It may be difficult to understand but cooking from scratch requires more energy than I can muster some days, so having a freezer stocked with ready meals, means I maintain a relatively sensible diet.
- Poly-pharmacy and alcohol is a risky mix...but that doesn't mean I can't enjoy a drink. I just have to be careful. *hic*
- There is a lot of joy to be found in discovering a rainbow coloured dosette box.
- The best kind of friends are the ones who turn up at your house in PJ's ready to snuggle and watch films on a bad day.
- Functioning and "being well" are very different things. Chronically ill people function with a great deal of pride and stubborn, often long after we should admit defeat and take a day off.
- Being an expert patient is important. You will frequently come across medical professionals who've never heard of your condition before. However, the way you go about this can change the treatment you receive. Always be polite, always be friendly, make suggestions - not demands. Understand that you're the kind of patient that scares a doctor, reminds them they're not superman/woman.
- A good GP can be far better than multiple rubbish specialists. See the same person, as regularly as needed. Relationship leads to understanding. My GP enables me to manage my condition to the best of my ability. She works with me.
- Chronic illness is not fair, and it is totally okay to grieve for the person you might have been. However, this is not a long term fix. You have to accept, you have to move on and make the most of the life you've got. My life can be just as fulfilling with PoTS as it could've been had I never developed it.
- If you love salt...it's not all bad - you have one of the only conditions in the world where you're positively encouraged to eat more salt! And yes, that does mean you can have popcorn for breakfast.
- Make friends with people like you...my network of friends with PoTS has grown hugely over the past year - as much as I can explain it to other people, these are the friends who really understand. They get that I'm crap at replying to texts or emails, they get that I might be unreliable when it comes to socialising, they get the frustration and the sadness, but also the hilarity that comes from having a condition that results on you spending a fair amount of time horizontal.
- I am NOT lazy. And I hold great fear that people will perceive me as such.