Writing the next chapter 

I’m in a time of huge change and turmoil. The pursuit of happiness has led me down a path that is new, terrifying and forcing me to really look at all elements of my life and health. Chronic illness in its essence is a scary, limiting thing, and it’s very easy to become too afraid to take risks, and to push for more from your life, as you are forever looking at the what ifs… What if I can’t cope, what if I fall apart, what if I can’t, what if I push too hard or too far and leave myself broken? I’ve realised that I’ve spent a long time being afraid. Afraid of change, afraid that I wasn’t strong enough…..Afraid that I would die. The biggest thing to fear though, is giving up, and accepting that this is it. Believing that this is all I’m worth, and all I can ever achieve.

Circumstance and choice have led me down this path of fear for a long time, and I’ve begun to shift toward a place where I have hope for more from my life again. I want, so desperately, to push my boundaries and fight for more. I no longer feel afraid of mr judgey pants general public; This journey has made me realise the only thing I have to fear is myself. It’s all about mental attitude, always. Instead of saying I can’t, I want to say I’ll try. Instead of saying no, I want to say let’s give it a go. I need that. I’ve lost so much because of my health and I guess I felt that I only deserved to remain in my box as ‘that Ill woman’, that somehow I wasn’t allowed to be anymore than that.

But I am.

I’m smart, kind, and  passionate. I think deeply about things, and always try to learn more each day. I’m still growing and changing despite my 37 years. There is so much more I want to see and do. It’s much harder to take the path that risks the what ifs, but I have to know what I am capable of. Writing this has blog has empowered me to really assess what I want from my one shot at life, and where I want to be. I don’t want to just give up and accept that this is it anymore.

I need more than that.

I deserve more than that.

I’ll make mistakes along the way, and bad decisions I’m sure, I am a human being after all, but I have to fight for something more. To be a better mum, to find that place that makes me feel like I fit in the world. I’m desperate to start putting myself well and truly out of my comfort zone. I want my boundaries to be tested. Yes I am a seriously ill woman, but does that mean I can’t at least try?

As ever, my journey has its lightbulb moments, and this year for a number of reasons, I’ve found they’ve been coming hard and fast. Admitting to myself that I suffered from negative self perception due to my physical health was a biggie. How did I end up feeling so devalued, can anyone else really do that to you? Are politicians, the public, friends or family to blame for that, or is it really all you? Undoubtedly it is traumatic when you get the ‘get a fucking job’ types shouting you down and judging your role in society, but does that have to define how you feel about yourself? Isn’t the power always in your own hands? After all we all choose how we live, how we present ourselves to the rest of the world, and the person we want to be.

I want to be the best I can be.

The happiest I can be.

The healthiest I can be.

My God is it a battle at the moment. The balance of my life has shifted so dramatically it’s taking huge effort to restabilise myself. I’m learning all over again how to micromanage my life and time. To juggle four children, endless health appointments, issues and a home, yet still find the time to do the things that make me happy. Writing, the sea, family and friends.

Adventures.

God I need adventures. I wrote a few months back that I felt like I never could adventure truly again, but that is bullshit. I can. I just need to be fierce and try. To find the adventures within the limitations I have. Before you say it, I’m so far from being in denial, it’s almost funny, I think if anything I denied that I wanted more and needed more for a long time, because I was frightened. My health is terrifying at times, but I can’t quit.

I won’t ever quit on myself again.

I want to look back and say yeah, you really did say screw you stills disease and grabbed every moment you physically could and lived it.

That’s how I win.

So frigging what if it means using my wheelchair. So what if I’m in pain. So what if I’m tired. It’s got to be worth it to keep experiencing life, even if that is just sitting looking at the wildlife on the shore, or making myself sit with the window open looking at the boats and reading, or driving around deciding at each junction which way to turn. Is the fear of the unknown so bad? Why do I always feel like I need to control so much and have everything so intricately planned out? I guess it’s because my health is so unpredictable, it helps me keep the power, but if that power makes me miserable is it worth it?

I honestly have no idea how this is all going to end, whether I am really capable of achieving more, but I have to find out. What is the point in it all otherwise? I need to show myself and my children that this illness doesn’t have to define me, that I am more than that; I deserve more, and nothing life throws at me will ever beat me if I can just keep fighting. It’s never too late, so never give up kids, ever. There is no problem or life event that stops you from choosing your next step, your options maybe more limited, but there is always a life and happiness to be carved out if you can only find it.

The next chapter is simply waiting to be written.