1. I take approximately 24 tablets daily. This does not mean I am an addict. When you rely so heavily on medication, your mindset inadvertently changes. For example, an otherwise healthy person would think 'I have an awful headache... I'll take some painkillers and get rid of it." For a chronically ill person, it becomes, "I'm in pain, I'm always in pain, but am I in
enough pain to warrant taking painkillers? How many tablets do I have left for the rest of the week in case it doesn't work and I waste it? What pain score am I at, and what corresponding strength of tablet/combination of tablets do I need?
2. Pain can make me incredibly moody. When it gets to the point that I cannot function or stand upright at all, I get snappy at everyone. It's because I'm frustrated with myself. There are many times where I need to lay in a quiet dark room by myself until the headache eases. To my patient family who put up with this, thankyou.
3. The hardest thing to accept about my reality is the fact I can't go out and be the busy social butterfly I desperately want to be. It's incredibly frustrating, and I feel so guilty every time I have to let people down and cancel plans
yet again because I can't leave the house. I have to constantly remind myself that I'm not the unreliable one, my health is.
4. People think it's a luxury to be able to lay in bed and watch netflix all day everyday. Of course it is, I'm very lucky to have the resources available so I don't have to force myself to work everyday just so I can afford food or a roof over my head. But believe me, after 5 years, the novelty of not being able to leave your room quickly wears off.
5. Being in hospital is exhausting. Not just physically, but emotionally too. You're constantly fighting. Fighting for medication, for appointments, for someone to take you seriously.
6. The most powerful thing you can say to
anybody with a chronic illness is 'I believe you'. Living with an invisible condition means there are usually no outwards signs of pain. It's so easy to put on a face of makeup, dose up on strong painkillers and say 'I'm fine!' Nobody wants to be that person constantly going on about how awful they feel. But sometimes it is nice for someone to acknowledge the pain we are actually in.
7. I would never have taken up art if my health had not deteriorated. I have found so much more joy and self satisfaction, from a hobby I would never have had the time or drive to pursue otherwise. I'm incredibly lucky that I have had the opportunity to cultivate this skill and begin my journey to being the next Van Gogh.
8. It was really hard to give up my independence. I am unable to drive, move out, work, go to university, and there are also days I need help to get dressed, to get to the bathroom and can't get around without someone pushing me in my wheelchair. It's a daily battle being honest with myself and putting my pride aside. It's hard to remember that people are more than willing to help, I just need to ask. Swallowing my stubbornness and being honest with myself is a lesson I'm still learning.
9. Giving up a passion because you can't physically do it anymore is heartbreaking. I miss acting. I miss being on that stage, I miss the community of close friends I used to have. I miss all the days and nights spent rehearsing, being fully immersed in theatre life. But I know there will be plenty of other ways I can get involved in the future. Maybe I need to find a role where I can just lay in bed and be still the whole time. Betty Parris reprise anyone?
10. The best piece of advice I have ever received was from my Mum. 'When life gives you every reason to be unhappy and miserable, show the world that you can deal with it. Make people wonder how you're still smiling.' Now this doesn't mean you have to fake being Pollyanna happy 24/7. It is healthy to feel negative feelings, but what's not healthy is allowing it to take over your life.