For those of you who read my POTs blog post, you’ll know that I suffer with POTs, chronic fatigue syndrome, hypermobility joint syndrome, fibro, and a bunch of other chronic illnesses. A normal day in the life of Jess is sleeping 16+ hours, doing uni work, eating, then going back to sleep, if i’m lucky i’ll have a day where I feel normal, get up at a normal time and can go out and do things, for now, these days are pretty rare.
My medications being adjusted and I’ve suffered with complete exhaustion for 2 days straight now. Today’s the day that I feel active, which is great! But before today, I slept for 28 hours straight. 28 HOURS! I woke up once to go to the bathroom, that’s it. I’m 19 and still suffer with denial that this is now my ‘new normal’, but the people around me that have been supportive understand that. But it’s still difficult to come to terms with.
This is an open letter to anyone suffering with any chronic health condition. I’m lucky I can explain myself through words, and express my emotions, some people don’t even have that ability.
Dear – Person reading this, hoping for some light,
THIS is our new normal. I know, I found that saying hard myself. New normal? No, no NO! I want my old normal back. I want to wake up at 8am, go to University and still feel active by dinner time. I want so badly to have a job for extra money and not having to feel like I can’t indulge myself in things other people can. I want to go out drinking and still get up for lectures and expect not to feel wiped out for days on end. I SO BADLY WANT TO EAT DAIRY PRODUCTS OH MY GOD. DAIRY! Cheeseburgers, icecream, and MAN DO I WANT A PIZZA WITHOUT THE CONSEQUENCES.
But I need to stop mourning what I can’t do and can’t have, and focus on what I can do, and what I do have. I read a comment on chronic illness stating that we should be thankful we don’t have cancer, and we aren’t dying. I appreciate that comment more than anyone understands, I have had family members pass due to cancer. But we also need to not compare our illness to any other illness.Cancer is awful, it’s a number one killer in the world, and I would never wish that on anyone. But I would also never wish my illness on anyone. Some people with my illness (and other chronic illnesses) have life threatening complications, and my illness alone without those complications is a daily battle, and that battle will continue through-out my life. I need to consider now whether I can continue with University, I need to consider whether or not children is an option for me which is painfully sad, and I need to consider the alterations to make day-to-day life easier for me. Although Cancer is an awful disease, we cannot compare one illness to another. It’ll drive us insane. This brings me onto my next point.
Because chronic health conditions cannot be seen, it’s hard for people to understand what you’re going through. I know it’s upsetting to hear, it’s upsetting for me to face at times when I’m feeling weak. If I put my make-up on, and do my hair on a good day, nobody can see whats wrong with me. Clearly. At the most they’ll see me limping if my joints are bad. ‘Normal’ people need to understand this. You can’t see a chronic illness, so if somebody comments one more time about seeing someone without a wheelchair park in a disabled bay I swear I will go crazy.
Never feel lazy, never feel ‘not good enough‘, never let anyone tell you its all in your head or you’re making it worse for yourself. Too many people with POTs get diagnosed with anxiety, 97% to be exact, when it’s not. I suffered with depression (due to personal reasons) but also because since being 14 I was told ‘teenagers are lazy, they sleep‘, ‘your palpitations are anxiety‘, ‘you dont look sick‘. If you know something is seriously wrong with you, and your having to let it rule your life, please don’t accept a doctor’s answer of ‘you seem fine to me’, you know when you aren’t feeling right. Especially after months and months.
Please never feel alone. Please never sit in your bedroom crying so hard you can’t breathe. Even after a diagnosis your life is super difficult, you think it’ll take a weight off, and it really does, but it’s just the beginning of your new normal battle.
Never feel like you want to end the pain in your life, because it’s easy to think that way, but the real strength inside of you will push you through this storm, until you come out of the other side with new medication, new support and a new attitude to life.
I send limitless amount of love to any of you suffering, with any illness, and these words will hopefully end your screaming of insanity that nobody around you listening. I’m listening. I understand.