life with chronic pain

On this blog and on social media, I often mention in passing how I've been feeling ill/poorly, having migraines or headaches, but I've never been more explicit on the matter. And for quite a while now I have actually wanted to start talking more about these topics, maybe even health (physical and mental) in general. Because, here's the thing: I've lived with chronic pain for over a decade now. It has not been a fun experience.

 I have never been arrogant or self-involved enough to think I am the only one going through and experiencing chronic pain (although I can be arrogant and self-involved in other ways), but at the same time I never fully realized that there are people living lives almost exactly as mine. It wasn't until I saw this video by Shawna (almost two years ago, so yeah, I've been sitting on this for a while) that it fully dawned on me that other people live with chronic headache(s). Obviously I've always known other people have chronic illnesses, conditions, things they have to deal with. I had acknowledged - and still acknowledge - that some people have it worse than I do and some have it better. But that there were other people living with a chronic headache? Hadn't really thought about it. Even when I knew that my own grandmother had had a seven-year headache, I hadn't thought about there being other people living in the same time period I do, experiencing similar - or even the same - things I do. Which is why I wanted to start talking about it, in hopes that it's of help or comfort or informative, even if only to one person. And also, because talking about things generally make yourself feel better as well.

So here's my epicrisis of sorts: I got my first identifiable migraine at school when I was 14. The worst headache I had experienced that far, lost my eyesight, felt nauseous, the works. But I had experienced headaches since I was a tiny child, didn't want to appear "weak" or "attention-seeking", so I stayed in school and did my usual headache cure when I got home: a tiny bit of ibuprofen and sleep. It had worked so far, but this time my headache didn't go away and just kept going. For days. My mum (who also has migraines) persuaded me to go to the doctors (I hate going to the doctors - back then and to this day) and from then on it felt as if I was always at the doctors. I spent nights at A&E, I had scans, tests and MRIs, I went to physical therapy and a psychologist, I tried all the meds, experienced all the side effects, I went to public and private, I saw regular doctors and specialists. Nobody really figured out what was wrong with me, apart from the fact that I now had migraines and one of them was prolonged, turned into a chronic headache. And so, since the age of 14, I've not had a day without headaches, or being "healthy".

 Now, most days my pain is more or less just something that I know exists within me. Kind of like my toes - I know they are there, but unless I think about them I don't fully feel them. They exist and do their thing regardless of me constantly thinking about them and fretting whether or not they stay the same all the time. I can push it aside - it doesn't make it any less real but it doesn't have to be what's constantly on my mind. If that makes sense? Which is also why I prefer not to constantly think about my pain. If I do, I get fully absorbed in it, it feels more intense than it actually is in that moment, and I would never get anything done. Because based on the logic of staying in bed when ill or in pain, I would literally never get up. But getting to the point where this is how I feel about my pain has taken years.

It is the easiest thing to fall into feeling sorry for yourself, feeling what you're going through is unfair, drop everything else in your life, isolate yourself, just be ill and in pain and let it consume you. And all that is valid: you're allowed to feel sorry for yourself, it is unfair, it isn't what you had planned your life to be like. Yet you can't stay in that state of mind forever and all the time. There's got to come a time to stop feeling sorry for yourself as that isn't going to be any help. In that video, Shawna talks a lot about taking responsibility for yourself and your life, and I find that so important. And you can do it in baby steps. For me it was largely about accepting that what it is is what it is and coming to terms with it. In the beginning I spent months at home, not going to school or anywhere - first thinking I'd get better and later thinking I'd never get better. A big step was realizing this is my life now, I need to live it and get back to school - which is what I did. Feeling or being left out on experiences when you have chronic pain is a big thing as well, and you probably cannot do everything others do or you did before. But you can learn about yourself, see what you can handle and choose the experiences that are or that you feel are important, instead of doing nothing. It's definitely not going to be easy but taking responsibility, coming to terms with your situation and learning to actually live again is what one needs to do in order to move forward. Chronic pain or illness or any condition is a part of you and your life, but it should never be what defines you.

What my pain is most days, is manageable. And that is something I am so thankful for. Although it does limit my life, at the same time I can live a very normal life. Another thing I am thankful for is my mental health. People with chronic pain or illnesses are quite likely to struggle with their mental health and especially depression is fairly common. Which is why I feel very lucky that my mental health has always been okay, but I do still think it's really important for me to keep an eye on how I'm feeling and what my attitude towards myself, my pain and how I'm managing with life. Taking one day at a time is 100% how I think most people with chronic pain live their lives, myself included.

I'd absolutely say that I am not the same person I was before chronic pain. Granted, I was 14 when it started and nobody is the same over a decade later. But it has had an impact on my personality, and not all of it is bad. Yes, chronic pain has probably played its part in me becoming more introverted and made me isolate myself more than is healthy (and like everyone, I definitely have things like this that I still need to work on!). Feeling the need for isolation is not difficult to fall into, but actually reaching out to people, getting help and support is what most people actually need. But living with chronic pain has also helped me grow as a person and helped me learn about myself, life, others, whatever. I have calmed down a lot, I have become a lot more patient and more empathetic.

Even when I say my pain is manageable on most days, at the same time every day is still a struggle. But every day I'm trying my best, trying to stick to a routine that I know will keep me "better" and "healthier". And although you can never fully know what another person is going through and feeling, I do understand what it is to live in pain all the time and I do empathize with anyone who is in pain chronically, occasionally or anyone who deals with other issues. It's hard, and it doesn't always get better for everyone, but I still hope we're all doing okay, trying to be better, creating healthy habits and thought patterns, and managing. Because sometimes managing is all you can do, and that's okay.

I'm planning for more chronic pain kind of posts, so if you have any questions or thoughts, send them my way! And, of course, if you ever want to or need to talk about anything, I'd be happy to be there for you. Just give me a shout on social media or send an email!