This blog was guest written for Findacure by Jessie Ace. Jessie was diagnosed with Multiple Sclerosis aged 22 and has been an active advocate for individuals with chronic illness since. She is a writer, public speaker, illustrator and host of the chronic illness podcast ‘DISabled to ENabled’ where she interviews everyone from celebrities to patient advocates and charities. She is founder of the empowering ENabled Warrior tribe, and her blog jessieace.com where she shares tips and advice for living your best life with chronic illness. She’s worked with the National MS Society, MS Trust, MS Society, shift.ms, and MS-UK and been featured on CNN, Huffington Post, Yahoo, and The Mighty among others. She provides help and advice for people living with chronic health conditions after her own experiences of being diagnosed with MS aged just 22-years-old. She’s on a mission to fill the internet with positivity after her doctor told her to ‘go home and google’ her condition finding every scary story going. Jessie is the author of the ENabled Warrior Symptom Tracker book which helps you manage multiple conditions, medications, spot symptom patterns, prioritize your energy, achieve your goals, and accurately keep symptom records for your doctor.
My diagnosis came as a shock. Within three days, I went from being perfectly healthy to having a lifelong degenerative health condition. I fell apart, especially when I was told to ‘go home and Google it’ to find out what it was for myself. Seven years in I’ve been on a rollercoaster ride of painful trial and error. I’ve finally learned the secrets that I feel it’s my duty–from one person with chronic illness to another, to pass on.
Here are the five things I’ve learned that keep me living a meaningful life with a chronic illness that I hope will also help you too.
You may or may not have heard or used positive statements or “affirmations” before. I’d never heard of them until someone suggested them to me. But using these statements every day is how I managed to go from being shy, unconfident and overwhelmed with symptoms to someone who can stand up for herself in medical appointments and feel confident every day. Positive statements train you to create positive language patterns in your mind. The things we tell ourselves affects everything we do-without us even realizing!
When we have chronic illnesses, it’s so easy to get wrapped up in what we can’t do, right?
How many times do you wake up thinking to yourself, “I am so exhausted today”, “I am in so much pain today.” Let me ask you this, do you think these statements make you feel more or less tired/in pain? More, right?
What would happen if we became aware of those thoughts and we flipped them to, ‘I AM energetic today’, ‘I AM strong’, “I AM able to handle anything!”. Even if we are not feeling these things; Do you think that would help make you feel better or worse? That’s right, better!
Here are some examples:
- I AM CONFIDENT
- I AM ABLE TO HANDLE ANYTHING
- I AM ENERGETIC
- I AM FULL OF LIMITLESS POTENTIAL
- I AM FEELING GREAT TODAY
It won’t happen overnight but keep repeating these every day over a few weeks, and you’ll start seeing a huge difference.
Keep track of your diet.
Foods are chemicals.
I’m not just talking about the heavily processed foods. All foods are made of different chemical compounds. Glucose, Sucrose, Fatty Acids, Omega-3’s are all examples of these chemical compounds, and these all have a different effect on the body.
Because of that, they can alter your symptoms.
Noting down what you’re eating means you can correlate that with your symptoms and you can find which foods are triggering your symptoms and leading to flares.
Getting in control of your body starts with what you put into your body.
Make sure also to note down any snacks and drinks as well as your main meals, so you have a clear idea of what is affecting your symptoms.
Keep accurate records
How many times have you been in a medical appointment and your doctor asks you things like, “How long have you been on this medication now?”, “When did this symptom start?”, “How long did you feel that symptom for?” They use these questions to try to figure out why you’re feeling this symptom, whether it is a new relapse or maybe a recent symptom appearing. For most of us, we rely on remembering these things, which quite often leads to errors.
The problem with errors is that it may give the doctor a false prognosis and send you for tests that you may not need. These tests cost a great deal of time and money (not to mention, stress.).
I got so frustrated and fed up with having to remember these things that I made a book where you can track symptoms in less than five minutes per day. Alternatively, you could find a symptom tracking app. If you use an app, make sure it is secure and your data protected.
It’s so easy to feel depressed when we have a chronic illness.
We are continually battling symptoms, spend far more time in a hospital than we’d like, and get frustrated when we can’t live life on our terms.
A great way to take control of that is by practicing gratefulness. However depressed you feel, or however hard things seem, there is always something to make you feel good.
It could be hot cocoa, wearing your favorite sweater, or having a hug from your dog. Make a note of all the good things that happen around you. It helps to rewire your brain and make you feel happier. Happiness lessens stress which can improve symptoms. Join our ‘WINsday’ posts every Wednesday and celebrate your wins with us on Instagram.
Something that I find challenging is fatigue. Do you get fatigued too? I’m one of those people who always has to feel productive, and I get so frustrated when my energy runs out halfway through the day, and I don’t tick off most of my ‘to-do’ list.
The best hack I have on that for you is to write down everything you need to do in the evening on some paper. Then choose your top three most important things on that list (it could be, to put the washing in, respond to a message, finish episode three of a new series, etc.) and do those things first in your day.
Living with a chronic illness isn’t fun, it’s just something we have to do. Hopefully, these make it slightly more manageable. Give these tips a try and make sure to connect with me and tell me how you get on.