1. How to wait.
Wait for a referral. Wait to see a doctor. Wait for a diagnosis. Wait for treatment to start. Wait for treatment to work. Wait to see if you get better. (Then most likely) Wait for different treatment to start. My illness has caused me to both metaphorically and physically spend the last 11 months in waiting rooms. I waited two months just to understand what was wrong and why does every drug take between 2 - 3 months to work?! For my doctors, each week that passes is insignificant. For me, it is another week waiting for my life to start again.
2. How to be flakey.
I used to be the girl who was always early and loved to plan ahead. I've recently learnt some new skills I don't enjoy so much, such as being late, letting people down and having to adapt plans around me. I have become a complete commitment-phobe at planning events in advance. I have spent the last 10 months making plans thinking 'oh I will be better by then' but then I'm not and I find that hard to deal with. I've learnt though that most people don't mind and they understand, its more how I feel about myself when plans are rearranged. I've learnt to let go of the guilt as it's not me being flakey, its my illness.
3. How to multitask.
I can balance ice packs on my head and each knee whilst having a separate heat pack on my bladder, stomach and ribs...whilst sitting and holding a sick bowl! The difficulty is then when I need to go to the toilet which with painful bladder syndrome is all the time.
Lupus affects pretty much everything at the moment and sometimes I sit there and try and think of one part of my body which hasn't been affected (my eyeballs if you are wondering). It's like spinning plates trying to stay on top of all my symptoms.
4. How to cry laugh.
A particularly unattractive combination but you never know when this skill may come in handy. I can be sobbing inconsolably one second and then instantly switch to hysterical laughter and back again so fast even I don't know what's going on. One factor is prednisone, (hey mood swings) but I also think living with pain and having my whole life flipped upside down has put such a strain on my mental health too. Yoga, journalling & my Instagram account have been huge factors in letting me process what my body and I have been through together. That and cry-laughing with friends and family.
5. How to do a crossword.
Not many 26 years old probably have time to sit back and spend hours completing a crossword. They are probably too busy working full time, going out, going on holidays and buying houses. But not me! Thanks to chronic illness I have had the luxury of working out solutions to life's weird facts. It started as a way to combat brain fog and being unable to work as I didn't want to lose my precious brain cells. It actually turned out to be the best therapeutic way to distract from the anxiety of appointments, horrors of bladder instillations and those really bad pain moments. I am looking forward to when my days have less time for crosswords, but for now I'm hoping to progress to cryptic clues next!
I have learnt more about myself in the last year than I have in the previous 25 years. I've learnt where my strengths are and when to ask for support. I am not one of these amazing warriors that say 'I am grateful for my illness and if I could go back again, I would choose the same path' etc. If I could back I would 100% chose NOT to have Lupus. But I can't and I am accepting that although I wouldn't choose this, without Lupus, I wouldn't have found my passion in Actively Autoimmune!