I’m not exaggerating when I say that 2018 has been really tough year. I went into the year high on the news that I have been offered my dream job and my main aim for the year was to buy my own house and live independently. The reality has been very different. By the end of January it was becoming clear that I was very unwell, meaning that I had to turn down my dream job because I simply was not well enough to even get out of bed, let alone work in social services. With my sudden unemployment, I was forced to take on the benefits system, which was utterly soul destroying. My dreams were shattered further when I realised that not only was I too unwell to move out, I also couldn’t afford it.
- I know my body better than anyone. The NHS is fantastic and I wouldn’t be alive without it, but the nature of living with rare conditions and being medically complex means that I need to advocate for myself and education medical professionals, because very often, they aren’t taught about the conditions I have.
- I have got to fight, even on the days when I’ve lost all hope. Don’t get me wrong, there have been days when all I’ve wanted to do is hide in bed and that is okay. But things won’t ever move forward if I don’t speak up and demand the treatment that I need.
- Friendship is a two way thing. Toxic friendships aren’t helpful and I’m better off without some people, as painful as that is.
- Not everyone will understand. The nature of invisible illness is that you can’t see it. A lot of the time, I look pretty healthy but that doesn’t mean I am well. People often say that I look well and therefore assume that I’m better or cured. Unfortunately, I’m never going to be cured and just because you can’t see what’s going on inside my body or the amount of pain I’m in, it doesn’t mean that I’m well. Over the years I’ve been given well-meaning, but quite frankly stupid advice about how to make myself better, ranging from eating quinoa, to drinking beer, to following a clean and plant based diet. It takes a lot of effort to not roll my eyes to these suggestions.
- My hopes and dreams will change. Unlike most healthy twenty-somethings, I don’t dream of traveling the world or getting a promotion or having an amazing holiday. My hopes are simple: to stay out of hospital and for my other sick friends to be as okay as possible.
- I can never have too many books. At the beginning of the year, I set myself the challenge of reading 52 books over 2018. This is one thing that I succeeded with and my book collection is slightly growing out of control.
- It’s okay not to be okay
- I’m allowed to be terrified. This year has thrown many new things at me, that I never expected. My new normal has taken a lot of adjusting to and I’m still not fully there. Having numerous illnesses that can’t be cured and are likely to worsen is scary.
- There will still be good days.
- I can’t face things alone. I need people to support me, whether they are family, friends or medical professionals. I can’t fight the shit stuff alone.
- I have got to pace myself.
- I’m allowed to miss being healthy and I’m allowed to be resentful.
- As much as I hate it, medication keeps me alive.
- Never underestimate the power of a pair of comfy pyjamas.
- My body will change and I won’t always be in control of that.
- Being as healthy as possible requires work.
- Medical professionals who get it are incredible and I need to appreciate them.
- I’m a lot stronger than I give myself credit for.
I’m hoping more than anything that 2019 is a little bit kinder to me and doesn’t throw any more illnesses at me.
Happy New Year to all, keep fighting and know that you’re not alone.