I’ve been thinking a lot over the last week or so about how having a chronic condition or disability shapes your thinking and how this can be taken by those who don’t have the same experience (this is a topic I thought I’d written about follow a similar incident back in 2017 but I can’t find a blog. Which suggests it may have been a social media rant and lost to the abyss).
When I went to lymphoedema clinic recently my legs were still the same size as when I was last seen in clinic in March. And the specialist nurse I see told me that she thinks it’s likely the swelling has reduced as much as it’s going to. No one is saying it’s never going to get any smaller, but the thought is it’s now unlikely and the goal for next time I go to clinic is for things to still be the same – i.e. stable. Which given that heat is known to make lymphoedema worse and when I went last summer my measurements were worse than the time before would be a huge thing.
I’ve known since the very first time I went to clinic in November 2017 that they didn’t expect to be able to completely resolve my swelling and that whatever happened I would need to wear compression for the rest of my life to maintain it. And as much as several of my carers told me how much smaller my legs were and how I was “definitely going to need smaller wraps” in the week or so before, I thought things hadn’t actually changed and I was half expecting this to be the outcome.
I’m fine with it. Things are so much better than they were before I started wearing compression, and I could never have imagined things would have improved this much. If this is it, so be it. I’m more comfortable, transfering easier, significantly less risk of complications and skin breakdown. Time to figure out what maintenance looks like (I’m currently being told I’ll need the same level of compression but my previous nurse told me last year she thought it might be a tiny bit less so who knows).
A few people have heard this news and immediately been pushing me to do more. Telling me how I shouldn’t give up and that I can “prove the lymphoedema nurse wrong.” even when I say that actually I’m fine with this and I don’t want to prove her wrong because this is better than expected one person pushed me again “so, you’ll prove her wrong again.”
But my sitting here saying “this is OK, I’m not bothered if things don’t get any better.” isn’t me giving up, being pessimistic, or negative or any one of a thousand words that me and my disabled friends all have stories of being accused of when we say we don’t want to pursue a cure or can’t do a particular thing, or think a treatment isn’t for us.
It’s me being realistic and recognising that I have done absolutely everything I can and that I’ve been advised to do to manage my lymphoedema. It’s the recognition that the things I could maybe do more of might not achieve any further reduction and if they do are unlikely to improve my quality of life any more.
I realise that everyone is just trying to encourage me and be supportive (and it is people who don’t know me too well who have made the comments). And I know it’s my having lived with CP my whole life that shapes my thinking like that which is perhaps why it’s hard for some people to understand it. But I felt like all the “you can prove her wrong” type comments were putting pressure on me I didn’t need and weren’t what I needed.
As all three of the members of the team I’ve seen have told me managing a chronic condition is a balance and I need to find a way to live my life whilst navigating all it takes to manage multiple disabilities. And that means being realistic and not being upset if I go to clinic next time and things are still stable. Not putting my life on hold whilst waiting for a new treatment, or even a cure that may never come.