Before I got sick

I wanted to write a post that refers to my fibro. I haven’t written much about it in a while and it’s still there, all the time.

These last few weeks, well over a month actually, have been a rollercoaster of lows and lower lows. Mentally and physically, no more so one, than the other. and not just my own.

The highs have been seeing my beautiful little girl loving the Christmas spirit and bringing our family closer together at a time when we’ve all been pulling away and retreating into our own dark caves.

Two years ago when I was ‘officially’ diagnosed with Fibromyalgia I had a few friends that were supportive.

I also had a few friends that I don’t feel 100% believed me and in all honesty maybe they still don’t. But about a month after diagnosis almost all of those friends forgot that this was something that was staying around for the duration. I felt as if they were waiting for an ‘end’ that didn’t come, a ‘recovery’ that never happened. I have a few really close friends that want to understand, that make the effort to learn about my condition in order to be able to empathise and spot the signs of a decline, and when I say few I mean like 2 or 3.

I also have some friends that don’t do that. Never ask me how its been or instigate a conversation around my illness. This used to piss me off. Mainly because it is such a big part of my life that I want, no, let me rephrase that I NEED to talk about it. I need support to manage it. I NEED to feel believed, because it’s real.

That being said, I get less pissed off these days because I’m logical, and I know that not everyone is as open as me. I know that people are fighting their own, battles and I may know nothing about them because unlike me they’re not talking about them or posting about them for everyone to read.

So how can I judge someone for not supporting me when they themselves may need support but I don’t know I should be providing it?

I’ve always been a ‘needy’ person, I need reassurance in all of my relationships (don’t ask why or we could be here a while) but in friendship I also seem to be the instigator as well.

The one that makes all the moves. Like if I didn’t arrange to see people I’m not sure I’d see anyone. Again, this used to really hurt my feelings.

I always feel/felt like after I got ‘sick’ people assumed I was a write off and in a lot of ways I did have to leave behind a different life.

But again, does it really matter if I make the first move? I mean, it’s not a competition is it?

Let’s imagine my worst nightmare being that it’s because people actually don’t want to see me, do I need those people in my life, or want them in it? They are two very different scenarios.

Before, I would of gone to the ends of the earth to try and make someone like me, to justify my behaviour and things I did and said, to change if I thought it would change people’s perception of me. Then when the didn’t I’d feel angry and bitter and go in the opposite direction.

Now that I accept myself for who I am I don’t feel the need to justify myself or beg people to be in my life.

That doesn’t mean I’m 100% happy it just means I’m ok with who I am. I’ve accepted her and I trust her.

In light of circumstances recently, I’ve been a lot less instigatory. And that’s because I too have been busy and preoccupied.

So again, I go back to earlier where I say ‘you never really know everything’ Some people are just busy dealing with their own shit show, they’re not mean, or ignorant’

And it’s ok! It’s not a crime to be busy, and it’s also not a crime to put yourself first. I bang on about self care, enough! So maybe that’s what people are doing when they’re not checking in or you haven’t heard from them in a while.

I’ve made some new friends over the last few years too, good ones. Ones I trust and talk to regularly.

Ive developed strong and I hope, lasting relationships with some of my colleagues too.

I’ve also got friends that love my kid as much as I do, and friends that don’t get involved as much with family life but are still there for me if I need them.

Anyway going back to the fibro, the point I was initially trying to make, before I started tapping away is that, I always highlight the bad days, because they’re bad and they’re prominent and intrusive in my life. But what about the good days. What about when I feel ok. Or better? I don’t shout them from the rooftops do I?

No, I just let them pass wishing they were more often, instead of enjoying them more. The thing is with chronic illness is, it does change your life. It does dull the good times and leave you wondering what’s next, they are less for sure, but they aren’t never!

Your life starts getting separated to ‘before I got sick.’ and now.

But If I’ve learned anything in the last month it’s this:

Your life really can change overnight.

You can go from being one person, to another in a matter of hours.

You could get hit by a bus and be left paralysed or hit your head on a kerb, and be left with lasting damage that means you aren’t able to do the things you were the day before. Have a stroke, lose a limb, you get the picture.

People won’t understand because it didn’t happen to them. They’ll remind you about how much worse it could of been, and you’ll be expected to be grateful it in fact isn’t worse.

They’ll rally round you when it first happens then when you aren’t recovered in a week, the offers of visits start to dry up. It’s hurtful at first, but it’s just a new phase of your life.

A bit like having a baby, the toughest job in the world, the one that everyone does differently and nobody seems to understand. It shows who’s with you for a long time and not just a good time. Be grateful for those people, tell them how much you appreciate their support and start grabbing the good days by the short and curlies, because this life we have, cliché as it sounds, it’s not a dress rehearsal.

Illness. Injury. Bereavement. There’s absolutely no doubt it changes us, but that doesn’t mean it can’t be for the better.