I’ve recently released an eBook! It’s called 10 Things You Need to Know About Living with Chronic Illness and it shows you, as the name suggests, the top 10 things you need to know about living with chronic illness. Here’s a sneak peek of the chapter entitled “You’re Not ‘Normal'”.
You’re Not ‘Normal’
If I was told one thing before I got sick, I wish it was that I was never going to be normal again. I was never going to fit in with everyone else. I was an exception.
Chronic illness destroys your life. You start to forget who you once were. When you remember something about your past, it doesn’t feel like it was your life. It’s like watching a movie.
As a healthy person, you’re not friends with everyone in your school year or at work, but you are still a part of that community. Chronic illness strips you of that. A lot of chronically ill people have to stop going to school or work. It makes you physically incapable of going. It’s impossible.
When I was in school, I would wish for the lessons to be over, to go home. Now, I wish I could go to college, to get a job. I wish I could be normal again. But what use is wishing when there’s no way any of that is possible?
Some students pretend to be sick to get the day off school. Well, as a person with a chronic illness, I pretend to be well. I pretend to be well whenever I see my friends. I pretend to be well whenever I see my family. I pretend to feel my age, even though I feel like I’ve lived a whole life. I’m only 17.
When you have a chronic illness, you can’t do everything a healthy person your age can do. This may be going to school or work, but it’s also going out with friends, going on a date, or going out to see family. Even if you can go out, it takes a lot of effort that can cause a flare, which tends to put you off trying. Just getting dressed can exhaust you, cause you to run out of spoons and be bed-bound for days. So can having a shower or doing some chores. How can you be expected to go out with friends or family when you can’t even wash yourself without having to have a lie down after? You can’t and it’s ridiculous for anyone to assume otherwise.
I tried to live like everyone around me for such a long time, but that’s not a healthy way to live. Not physically and definitely not mentally.
There’s no such thing as a normal life for anyone, less so when you have a chronic illness. How your life is going to progress is unknown and unexpected. There’s just no way of knowing what will happen from one second to the next. Your symptoms could be manageable, but suddenly you’re in agony and feel like you could throw up at any second.
This becomes your new normal. You get used to it, but that doesn’t make it any less horrible. You just learn to live with it and make the most of what you have.
If you loved this sneak peek of the chapter You’re Not ‘Normal’ (and I’m SURE you did, considering you’re reading this), you NEED to check out the full eBook of 10 Things You Need to Know About Living with Chronic Illness!
My struggle with normality
When I first got ill, everyone told me it was just exam anxiety. They told me to just do what I love – that just meant more music and photography. I tried, I really did. I tried so hard to get back to my old normal, but nothing was getting better. In fact, it was only getting worse.
I suffer from fatigue, amongst other debilitating symptoms. This means that ‘doing what I love’ was probably the worst thing I could be doing. I was wasting what little energy I had. I started hating music and photography, something I never thought would happen. It made my life even more exhausting and difficult.
Taking my own advice, I stopped doing everything. Who knew that this would help my physical symptoms? Certainly not the doctors I had seen! But this came with its own problems. I had no reason to get up in the morning, so I just didn’t. I didn’t want to do anything, so I didn’t. Now, I sort of see why doctors wanted me to do what I loved. Not that that worked, but it was better for my mental health. It’s horrible that things that benefit my mental health are detrimental to my physical health and vice versa.
Luckily, I was feeling a little bit better the summer of 2017 (the year I got sick). I even managed to spend most of the summer sailing and start college! Unfortunately, all this got too much for my poor body and brain. All I did was pick up the bug going around college, but that was enough for me to be worse than I had been right at the beginning of all this.
To be honest, I don’t really remember much since the beginning of 2018, which was when I picked up that bug. Most days have been the same since then – just watching TV and laying in bed. This became my new ‘normal’.
Since starting this blog, I’ve had so much more to focus on. It’s not very physically or mentally draining, and I can blog from my bed if I have to. This was a real pick-me-up. I can finally do more than just watch TV. Since I started blogging, I’ve rediscovered my love for music and photography. They’re no longer a distraction. I play and photograph because I want to, not because I was told to.
My new ‘normal’ is blogging, pinning (on Pinterest) and learning new songs on piano. It’s nothing like my friends’ normals – they’re in college studying for A Levels – but it’s my normal and I’m happy with that. It’s not necessarily what I want to be doing, but I feel the best I’ve felt in a long time, and I’m going to hold onto that for as long as possible.
Other chapters in 10 Things You Need to Know About Living with Chronic Illness
I’m not going to give it all away, but as this is a sneak peek, I thought I’d share a few more chapter titles with you:
- Not everyone believes you
- You find out who your real friends are
- It makes your life really complicated
- (And finally a more positive one) You learn a lot about yourself along the way