Sometimes I Wonder…

I sometimes wonder what life without having a long term condition is like, on the outside I look pretty normal but on the inside my hip bones are damaged and only getting worse, which effects knees, back and sometimes ankles too.

However much people tell you they understand, a lot of them don’t and never could. Even family, sure they’ve seen it all, been there through the various operations but they don’t really know the pain it causes.

Then there are the misconceptions, the idea that because you look fine you are or because you spend the day lying in bed watching tele life must be pretty good. I’ve had my condition since I was born so I’ve never known any different…but the pain has increased.

When someone gets a cold or a stomach bug, people get it, it’s easy to understand “Just have a few days of rest or take these tablets and you’ll be fine.” Usually that’s how it works, for someone like me; you don’t just wake up one day and are OK again. That’s the part people struggle with because yesterday might have been a good day, the pain being manageable and I felt as good as I ever do. Like I could go running and dancing, not having to worry. But waking up today might be a different story; it can be hard to get up because of not sleeping much, tossing and turning, trying to find the right angle to ease the stabbing sensation in your legs. It can be hard to stand and walk around…but also painful to sit or lie down. On those days, it feels like a constant battle to paint on a smile when you want to scream.

I will have surgery for my condition, first the left hip, then when it’s got worse the right one.  I’ve known that’s the only answer for a long time. I’m excited to have a new hip, imagining all the things I could do that I wish I could now. It’s scary too, sometimes it’s like every big stage of my life has been interrupted because my body decides it needs to have a little more drama. Learning to walk, I needed surgery. A year or so before secondary school I needed surgery on my knee. Less than a year into my GCSE’s I ended up with cancer. And now, when I’m finally finding my feet in the world of work, I’ll need a hip replacement.

I’ve always been extremely lucky to have a network of support and to have the medical attention I needed, all of my experiences have made me a stronger person, but it still sucks at times. I try to manage it with basic pain relief but sometimes I need stronger ones, which have their own effects.

I put alot of pressure on myself to keep going and keep pushing through when it does hurt, but some days I don’t want to. I want to lie in bed with the covers over my head and just sleep. I’m currently facing my fourth week off work since the pain started to get bad this time and it’s horrible, wishing you could go back but knowing that it’ll be too much to manage the full day.

It’s lonely and stressful at times, to know that people don’t quite get it, know that there are always the people that think you’re faking it, some even people you’ve been close to. I don’t try to make people understand anymore; I used to, but now I know that you can never understand something you haven’t experienced. I have a few friends that really get it, that are dealing with their own long term issues and I’m so lucky to have those people that I can just rant to and know they are dealing with exactly the same thing.

Chronic pain is never just a matter of “getting on with it” despite what some people expect, some days you can…and then some days you can’t and you have to take the time to rest.

I’ve been working on trying to move around a bit more, finding ways of getting out the house and trying to get back into some normal routines so fingers crossed I’ll be able to return to my job soon. In the meantime I’ll keep pushing through, trying to manage the pain and feel somewhat normal when I can. Keep Smiling.

Fay xx



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