1. What have you been diagnosed with?
Amber: I haven’t really. I got mono when I was 17, it didn’t go away so I had some tests. Everything was fine but they believed that it wasn’t all in my head so I got the ‘Chronic Fatigue Syndrome’ label.
May: All sorts of things like JHS (Joint hypermobility syndrome), other syndromes, an eating disorder, random infections that seem to last years and are antibiotic resistant. Syndromes, symptoms and things that really shouldn’t be so it’s no wonder I also developed OCD (Obsessive Compulsive Disorder) with all the anxiety of never having a name for stuff. I also suffer from PTSD (Posttraumatic stress disorder)
2. What do you tend to do at night when you can’t sleep?
Amber: Nothing much, I might watch a movie, I usually fall asleep within 20 minutes if I do. I don’t really have trouble sleeping at night, I just wake up a lot of times.
May: I never have this problem but if I did I would probably watch movies.
3. Worst experience/side effect of a medication you’ve taken?
Amber: I don’t take medication for what I have. Sometimes I take something for a migraine, and if that migraine won’t go away for 2 weeks, the meds give me a stomach ache but that’s about it.
May: I could go into some pretty horrendous side effects but they might turn your stomach so I’ll go with the one where I couldn’t eat chocolate and it was Easter.
4. How has your condition impacted your mental health?
Amber: Ofcourse. I mean, how would you feel when you are 17, having dreams about going to college, traveling, doing so much you don’t even know if you’d have enough time to do it all, and a few months later you’re at home and you can’t do anything anymore. Walking to the grocery store is all you can do on a good day. You know that this might not ever change and this is your life from now on. I think everyone would have mental health problems going through that.
May: It’s impacted it a lot. I don’t think you can be physically ill for a long time and not have it impact on your mental health. Always anxiety, worry, loneliness, they take their toll. I also think mental health can affect your physical health so I find the two hard to juggle.
5. Describe your social life.
Amber: Almost nonexistent. I have 1 friend in real life I still see, not very often, and I have my parents. Then I have my bestie, who’s on the other side of the world, so I am glad we have internet these days, it would be very lonely without.
May: I hate this question mainly because my social life is very limited.
6. What is the hardest thing to do when you’re illness is in a flare?
Amber: When in a flare it’s hard to think it’s just your illness again because sometimes it feels like you have something else going on, but it always goes away, sometimes it takes a few days, sometimes a month, but it does, so in the end you know it was just a flare. The scary thing for me is that sometimes you doubt yourself when you have a flare and you think “What if something very bad was going on right now? I wouldn’t even notice because I feel like this so often”. And ofcourse the frustration. You sleep enough, eat healthy, try to exercise when you can, and you still get these days you feel like crap without a warning. You just wake up like that one day when you felt fine the day before.
May: To get up out of bed no get moving.
7. Do you have any worries for the future?
Amber: Yes, I am afraid this is my life. I will live this way until I die, not able to work, do anything I want to do, just… exist. Because for me it’s not really living.
May: Heaps like never being well enough to make it on my own.
8. Favorite comfort food?
Amber: Couscous, with cinnamon, raisins, veggies, fresh mint. I adore that and I can never get enough of it.
May: Plain pasta with tomato based sauce and Parmesan cheese.
9. Lessons I’ve learned being sick.
Amber: Don’t postpone things you like to do. I know people these days are so busy with work and all but there are more important things. Visit the people you love more often, or call them if you really can’t. Go on that trip, not next year, but now. You never know what will happen, you don’t know if you will still able to do it in the future, for whatever reason. And enjoy, the little things. Go feed the birds, visit a shelter and give the animals some love, help a neighbour, watch the sun and the flowers and just smile. People forget about it because they are too busy, again, and it’s so important.
May: To never take anything for granted.
10. Three things that I miss that has been taken away from me due to my health?
My independence. Does this even need an explanation?
Feeling useful. I want to work, I want to go to school, but I can’t. I want to make money, I want to help people, or animals, or both, I want to be the one helping, not the one that needs help.
Trust. I don’t trust my body anymore. It can go from ok to very bad within a few minutes. It gives me anxiety because I am afraid it will happen when I am in public and can’t go home. I hate not knowing if I will feel good, it prevents me from doing things.
And I don’t trust people anymore. I want to, but it’s hard. It’s hard when you lose someone but when you’re ill, it’s even harder. You have little in your life and you start living for the people close to you. When they at some point decide they don’t want to be in your life anymore and walk out, without an explanation, it’s the worst feeling in the world. I want to trust and let people close but it gets harder every time it happens.
It’s hard I guess having lots of friends to go out with.
Having a very good memory.
11. How old was I when I first noticed my symptoms?
Amber: I was 17, I got tired easily, felt very weak, was yawning all day and cound’t concentrate anymore.
May: I was always the sick kid but it really became obvious at 13.