Let’s always remember to have empathy, compassion, and humility.
I’ve been struggling with my pain levels for sometime now. it used to be that I would have flare ups of Fibro, whereas now it seems to be a constant normal. One of the things that comes from this is that you slow down, you have too. I used to zip around everywhere, up and down escalators at work, I’d whizz around festivals getting us drinks, often zoom through a crowd in London leaving my partner buried amongst strangers, much to her disdain. However, I can no longer physically do that, I have to pace myself particularly now that FND affects my coordination and my ability to get up and down stairs. As frustrating as this enforced pacing can be, one of the massive positives of pacing is that I notice so much that would have otherwise passed me by.
The other morning I was taking my pooch for a toilet break when I saw this blob of white paint on the road; it’s little paw print shape created a big smile on my face. Such a simple thing, but something that can really heighten your mood. I loved it so much I had to take a photo, and it got me thinking about how much I must have missed when I was rushing around everywhere.
I went on to consider how important it is to take the time to appreciate, not just the natural world, but the people around us. Recently I was chatting with a friend of mine who works for the NHS. They were telling me how some medical professionals refer to Fibromyalgia as ”Fuckoffmyalgia” insinuating that they don’t see it as a real condition. This made me somewhat sad but didn’t surprise me. I have heard of some terrible experiences people have been subjected to, and the way that they have been treated is unacceptable. However, there are also a lot of positive experiences, where people are supported and receive whatever help is available. Unfortunately that help is somewhat limited when it comes to conditions such as Fibro and FND because, as my Neurologist put it, they are very complex conditions, and no one experience is the same. As frustrating and disheartening as it can be for us as patients, I do think that we as a collective need to be more understanding and empathetic towards others. I know this is going to be contentious and not everyone will agree but this is how I see it; When it comes to medical professionals they are used to treating what they can see; if you have a broken bone, they will do what is necessary to heal it, if you have a clear psychological issue hopefully you will receive the medication/therapy you require. So when patients have conditions that don’t easily fit under these brackets then it can be very tricky to know what the best route is. Yes, unfortunately some people will think, well there’s no physical cause for your pain so it must be all in your head!? My answer would simply be, isn’t all pain in our head? doesn’t it all stem from messages our brains and nervous system are sending? Therefore a communication breakdown between our brains and nervous system is completely feasible; the wrong signals are being sent and pain is occurring where it shouldn’t be.
To give another perspective, I have found some who suffer from chronic illness are full of negativity and, I hate to say it, self pity. Please don’t get me wrong we all feel sorry for ourselves sometimes, believe me I’m no exception. Chatting to others who have similar experiences can be fantastic for supporting each other and communicating with those who understand what you are going through. However, that doesn’t mean that we should stop empathising with those who do not suffer chronic illness, or should belittle what it is they are going through. I have heard people voicing frustration about others saying they are tired or in pain, making comments like they don’t know what pain is. I think it is important for us to remember that no one knows what anyone else is going through or feeling and we, as a ”chronic illness community”, need to not lose that humanity and compassion for others. There has been a lot of discussion about Long Covid recently and how a lot of the symptoms mimic that of Fibromyalgia. Rather than the posts I have seen, which are somewhat angry in tone suggesting that those with Long Covid get help yet those of us with Fibro are just left, wouldn’t it be great if we reached out to our fellow humans instead of creating a them and us divide and doing exactly what has been done, by some people, to those suffering from chronic illness. Shouldn’t we be offering empathy and support rather than exclusion? It may even end up helping to create more awareness of invisible and chronic conditions.
So yes it is tough, but please let us not get into this bubble where that is all we concentrate on. Let’s take some time out, look at the small things that make us happy. Take some time for a different perspective and not forget that everyone is battling something, regardless of the form that battle takes.
Ahhh Lou. Having FND too I can sympathise so much. No two days are ever the same. Sometimes you feel…
Very thoughtful poems enjoyed a lot
You just have to appreciate the good days, savour them and the bad days are for rest and recovery ❤…
Thanks Holly. First step is trying to figure out what I’ve done with my last post 🤣
You are doing great Lou, despite your struggles ❤ stay positive xx