Folks, I’d like you to meet Ellie. She’s a brave young girl who is facing any autoimmune diseases that keep her at home. She is currently unable to leave the house for long periods of time, even a trip to the doctor seems like a road trip across the country. But she doesn’t let this stop her from keeping a positive attitude and raising awareness for her diseases and many others.
Please read through Ellie’s story.
You can find her on instagram @chronicallyliving.
What type of chronic illness are you battling? I have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS) which is a form of Dsyautonomia and Irritable Bowel Sydrome(IBS). Together they produce huge variety of symptoms, some of the main being; fatigue that isn’t relieved by sleep or rest, chronic pain (joint and muscle, affecting all parts of the body), brain fog/cognitive impairment, nausea and other stomach problems, sleeping problems, constant sore throat and glands, feeling dizzy or faint, and many more.
What is the number one thing you’ve learned about yourself since your diagnosis?
Probably that I am able to deal with a lot more than I thought I could; I never expected to be in a situation like this but when you’re put in that situation you just learn to deal with it.
When were you diagnosed?
I was diagnosed with ME/CFS in august of this year, and then with POTS and IBS in November. I have been suffering with symptoms since the very start of the year.
What are your current medications/what lifestyle changes have you made to treat your illness?
In terms of medication: amitriptyline for sleep, pain and mood (currently reducing my dose), melatonin for sleep, domperidone for nausea (just about to switch to a new nausea med), fybogel for digestive problems, mebeverine for stomach cramps.tramadol and ibuprofen for pain,
Lifestyle changes: I’m mostly gluten free to help with my IBS, I try and follow a thing called pacing to make sure I don’t overdo my activity, and I take plenty of rest breaks during the day(Where i do nothing but lie there and listen to relaxing music)
How do you keep your mental health intact while dealing with the symptoms/changes of the disease?
I am on low dose antidepressant which possibly helps a bit, but mostly I try and focus on things I can enjoy and the little achievments every day. I’m also helped by being surrounded by loving, caring people who believe me and do their best to understand what I’m going through.
What do you struggle with most? What are you doing to overcome it?
I struggle the most with my fatigue, as it leaves me bedbound and unable to walk further than to my bathroom, and I sometimes can’t even manage that. To overcome it, I’m just having to do my best to keep my activity to a minimum to avid any further dips in energy level, and I hope that eventually I will be able to begin to build up my daily activity.
Any advice for newly diagnosed?
Try and keep your activity to a minimum-do half of what you are able to do! If you overdo it, your illness will only get worse and worse. And try and remember it isn’t necessarily a life sentence : people with ME, POTS and IBS do sometimes recover, and the majority of them experience periods of improvements, especially if you are young the chances of recovering are fairly good.
Rules to live by?
Do not overdo your activity. Love yourself and respect your limits. Don’t let other people tell you what you should and shouldn’t do. Don’t let people make you feel guilty for being ill. Always look for something positive in every day.
What does your perfect day look like?
At the moment, since I can’t leave the house I’d say a movie day with a few friends and maybe a bit of pampering time with face masks etc!
Go to Snack when flaring:Probably a piece of dark chocolate (I like 85%) because it doesn’t make me feel sick.
Favorite Author: Probably John Green! But I can’t read currently due to my illness.
Activity that lifts your spirits: Colouring!
Your philosophy/mantra that you’d like others to know about you: Make the best out of a bad situation.
What would you do with a million dollars? Give some to charity, some to my parents, buy myself loads of pyjamas!
Who do you admire? Everyone I see fighting their illnesses with such strength!
What is your mission? To raise awareness for invisible illnesses, especially ME/CFS.
Social media accounts? @chronicallyliving (instagram)